I do not even know where to begin or what to think right now. Without providing too much information, I have been having some health issues related to my c-section. I cannot believe sixteen months after my surgery, I am still having issues. I thought it was just a quick six week recovery. It did not feel like a quick recovery at the time. The six weeks were incredibly painful and limited my ability to do many things. drive, lift, be intimate, even hold and hug the kids sometimes. My incision was messier, more painful than most because of the emergent way it occured. I was black and blue, bruised for months. My stomach was an ugly sight that almost looked alien. Black, blue, purple with staples in the middle. Eww! Not to mention all of the emotional trauma that came along with this emergency surgery, the loss of control, of bonding, of dignity. The inability to nurse or cuddle or even see or greet my child was devestating in itself.
I hate my scar, I dont wear it with pride. I cringe when I see it because of the memories it makes me recall. The chaos and the fear of that day, the panicked rush to save us, my baby and I, was of most importance obviously. But in the rush common courtesy and decency was denied. My clothes were ripped and cut off of me quickly without regard for my comfort or modesty. It was in fact frightening to me, I was not prepared to have my clothes torn quickly, my nakedness exposed to a room full of people. My arms were tied to the table, quickly without warning or preparation, my legs as well. I wanted to ask them to slow down, wait a minute, calm order, not chaotic mess. The room was so loud and bright, I felt exposed, cold, scared. The room was also full of young doctors, medical students, interns, residents: all in a panic, without composure. How could I feel any semblance of peace or trust in what was about to happen to me. I was placing my life and my baby's life in the hands of nervous,panicked amateurs. I do remember one voice of calm in the craziness of those moments. That voice screamed, "Shut up!" He was my anestheisiologist and as he began to make his incision, I cried out because I could feel the cutting. He realized my anesthesia had not set in and decided to put me completely under. He acknowledged me, he looked into my eyes, he informed me of what he was going to do next. His was the last voice I heard before I drifted off in a medicine-induced sleep. I had been repeating the phrase, "Please Jesus' over and over and he let me know he would be praying as he worked for me. It was the sweetest moment of my birth. Not the moment when I met my son because that didnt occur until the next day. Not the moment when Jason and I shared in the joy of becoming parents once again, that also did not happen until the next morning. A kind doctor, a voice in the calm, is the most poignant memory of my labor because all the other moments were lost due to an emergency c-section and a very sick baby.
I didnt look at my scar for four days. It was all taped up anyway, I could not have seen it. But I did not purposefully look down until four days after my surgery while standing in the shower for the first time. I was weak from blood loss and major surgery. I could barely stand. The shower was tiny. Jason could not fit inside with me to help me stand. He stood guard, in the place of the curtain, in case I fell. I showered with my front away from him. The first modesty I have ever felt in front of him probably. I was ashamed and disgusted by my body, by it's "failure." I remember looking down and seeing my abdomen purple, it stood out because I am so very pale. I remember as I dressed in a fresh hospital gown, I braved a look in the mirror at my scar. I made Jason turn away. I could not tell much because of the bandages, but what I saw made me nauseous. My nice pretty belly was now all jagged and stapled. It looked like something out of a horror movie.
I have since been informed that my bruising was due to the extreme force and hurry of Caleb's removal from my body. They needed to push down and rearrange things in order to get him out. My surgeon performed her first emergency c-section on me. Lucky me. It is no straight line, no thin line, no small incision. It goes from my groin to my belly button. I no longer care about 'innies' or 'outies.' I have a scar that stands out much more than that. It has not faded over time, like other scars. My scar has turned a shade of purple, glaringly obvious against my paleness.
My husband is gracious and calls it a badge of courage and honor. He is thankful the scar exists because the surgery saved the lives of his wife and son. I can echo the thankfullness, nothing is more precious than life. But I struggle with more than vanity. I struggle with memories, a vivid reminder of a traumatic time in my life. I also struggle with scar tissue and pain. I have learned over the last two weeks that my surgery has damaged my uterus severely. My c-section surgery has created the need for another surgery, a hysterectomy. It is something I am still processing. Two surgeries I never thought I would need.
The hysterectomy will alleviate my pain and make life bearable and easier. I cannot do hormone treatments because of the risks associated with clotting disorders. I cannot live a life on painkillers, I refuse to live fuzzy or in pain. But the surgery seems so final and a lasting insult. I no longer wish to bear children, I no longer wish to birth more children. I am only 32 though, a hysterectomy seems so strange at 32. I am also not sure I can willingly go under the knife. My last surgery was so traumatic and stressful. I have yet to schedule the surgery. I cannot imagine my kids' reaction or how I will manage with recovery. I am not ready for it to be a reality. My poor body.
I am hesistant about posting this one. I am trying to live my life in the open. To conceal a huge part of my struggle and my life feels dishonest or misleading. I feel exposed in sharing but at least I have control over the exposure. I am still crying out, "Please Jesus." I am not sharing for sympathy or discussion on the evils of c-sections. I think I am writing for awareness, self awareness and to provide insight to others about the reality of birth trauma.
I havent scheduled my surgery yet in part because of fear or a refusal to accept reality. I also havent scheduled because I decided to take some time to pray, to specifically ask God to help me.
Tuesday, December 29, 2009
Sunday, December 27, 2009
Happy Birthday to my Panda
Tomorrow is my baby girl's birthday. She isn't a baby anymore, she will be 5. Yes, five. My heart sighs as I say that. I cannot believe my sweet, funny little Vanny Voo will be old enough for kindergarten, old enough to count her age with her whole hand, five digits = five years. Sigh.
She was teeny-tiny at birth with a head of dark hair. Well, what I thought was teeny-tiny until her brother redefined that for us. I struggled with her pregnancy as well, knowing something was wrong but not able to define or diagnose it. My womb stopped growing at 30 weeks, I had IUGR (inter-uterine growth restriction) A fancy name for a scary time in my life. Each week my ob would measure my belly and look at me with concern and say," I just don't know how much longer you will be able to hold on." I came in weekly for appointments and testing but we just could not figure out what was wrong. My sweet little baby came at 34 weeks, she was tiny to me at 4lbs and 13 oz. But she was beautiful with so much dark hair and the most delicate features. She came shooting into the room after a difficult and painful natural labor. The doctor barely caught her. Seriously!
I started laboring on Dec. 26, the day of the major tsunami. I remember watching horrified and saddened and wondering at the state of the world my baby girl would be entering. My labor grew more and more difficult, which is often the case with an induction. It seemed everyone in my life who could be of support was sick with the flu, including my husband. At one point, I remember calling and putting my friend Amy on standby because I needed support and everyone else was sick, sick, sick. I had the meanest labor nurse and so I returned the favor and became a mean patient to her as well. Not one of my proudest moments but something worth mentioning. Crave pulled it together and was able to witness the birth of our last little girl. The ob showed me my placenta and we realized why she was so small. It was a sight part of me wishes I never saw even though it provided answers. My placenta was full of clots and not healthy at all, no wonder she was so small, she could barely get nutrients.
My sweet baby girl, though tiny at the time, was made of sturdy stock and a strong will. She may be the youngest of my three girls but she rules the roost most of the time. She quickly stepped out of her small stature, she became a force to reckon with. She is my child most like her daddy; Ready to take on adventure, no fear, nothing to hold her down. She was the first child that caused in me the need to babyproof. She was a climber and an explorer. Her sense of humor is much like her daddy's as well and I love this. She keeps me entertained with her silly antics and her funny musings about life. My constant desire to teach ladylike habits and manners to my girls is challenged by Savannah but I enjoy even this battle. She shows me each and every day she is her own person.
She has a best friend, my sweet little neice Mya, my sister's little girl. They are only six weeks apart. Mar and I were pregnant together and it was a very sweet time in my life. We shared our misery, our maternity clothes, and the joys of pregnancy, also the concerns of our stressful pregnancies. Now we share this journey of mothering these two girls and it is so nice to have someone so close experiencing the same milestones and challenges. My best friend gave birth to my daughter's best friend.
I can hardly believe my Panda will be five tomorrow. She is still in to princessess and dress up and make believe. I know, having raised her sisters for a few more years, that these early years pass so quickly. I will it to last a little longer with my youngest daughter. I am not ready for her to enter the real world of homework, and mean girls and admonishments to act your age, or the introduciton of societal things that are above her age. The world comes so fast and I am eager to hold onto the beautiful innoncence of the first years for just a little longer.
My Vanny Voo, My Panda, is the neatest kid. She is very shy in public. In fact, she didnt speak a word to her preschool teacher until two weeks into the school year. At home, she is boisterous and loud, and quirky and funny. She has obsessions, unusual but adorable obsessions. She loves Mario and Nintendo. She loves Wonder Woman. She loves Panda bears. We watched a documentary on an earthquake that had destroyed pandas' habitat and from that day, six months ago, she has been raising money to save the Pandas. Her favorite foods are cooked carrots and broccoli. She will choose broccoli over cookies any day. She idolizes my little brother, her Nintendo friend, who played hours upon hours of Wii with her, including Disney Princess. She calls him her favorite boy buddy. He is flying in to see her, (and the rest of the family) on Tuesday. We will celebrate her birthday with him. She adores my dad, always wanting to call him and inform him of our dinner menu. And if we have green beans she insists we save some for Pap.
She came into the world so tiny but she has made such a huge impact on me and on all of our family. I wait for the day when she warms up to the world, when she steps out of her shyness. World, then you will be truly blessed and amazed by this sweet, funny, full of life little girl.
BFF
Uncle Jason
She was teeny-tiny at birth with a head of dark hair. Well, what I thought was teeny-tiny until her brother redefined that for us. I struggled with her pregnancy as well, knowing something was wrong but not able to define or diagnose it. My womb stopped growing at 30 weeks, I had IUGR (inter-uterine growth restriction) A fancy name for a scary time in my life. Each week my ob would measure my belly and look at me with concern and say," I just don't know how much longer you will be able to hold on." I came in weekly for appointments and testing but we just could not figure out what was wrong. My sweet little baby came at 34 weeks, she was tiny to me at 4lbs and 13 oz. But she was beautiful with so much dark hair and the most delicate features. She came shooting into the room after a difficult and painful natural labor. The doctor barely caught her. Seriously!
I started laboring on Dec. 26, the day of the major tsunami. I remember watching horrified and saddened and wondering at the state of the world my baby girl would be entering. My labor grew more and more difficult, which is often the case with an induction. It seemed everyone in my life who could be of support was sick with the flu, including my husband. At one point, I remember calling and putting my friend Amy on standby because I needed support and everyone else was sick, sick, sick. I had the meanest labor nurse and so I returned the favor and became a mean patient to her as well. Not one of my proudest moments but something worth mentioning. Crave pulled it together and was able to witness the birth of our last little girl. The ob showed me my placenta and we realized why she was so small. It was a sight part of me wishes I never saw even though it provided answers. My placenta was full of clots and not healthy at all, no wonder she was so small, she could barely get nutrients.
My sweet baby girl, though tiny at the time, was made of sturdy stock and a strong will. She may be the youngest of my three girls but she rules the roost most of the time. She quickly stepped out of her small stature, she became a force to reckon with. She is my child most like her daddy; Ready to take on adventure, no fear, nothing to hold her down. She was the first child that caused in me the need to babyproof. She was a climber and an explorer. Her sense of humor is much like her daddy's as well and I love this. She keeps me entertained with her silly antics and her funny musings about life. My constant desire to teach ladylike habits and manners to my girls is challenged by Savannah but I enjoy even this battle. She shows me each and every day she is her own person.
She has a best friend, my sweet little neice Mya, my sister's little girl. They are only six weeks apart. Mar and I were pregnant together and it was a very sweet time in my life. We shared our misery, our maternity clothes, and the joys of pregnancy, also the concerns of our stressful pregnancies. Now we share this journey of mothering these two girls and it is so nice to have someone so close experiencing the same milestones and challenges. My best friend gave birth to my daughter's best friend.
I can hardly believe my Panda will be five tomorrow. She is still in to princessess and dress up and make believe. I know, having raised her sisters for a few more years, that these early years pass so quickly. I will it to last a little longer with my youngest daughter. I am not ready for her to enter the real world of homework, and mean girls and admonishments to act your age, or the introduciton of societal things that are above her age. The world comes so fast and I am eager to hold onto the beautiful innoncence of the first years for just a little longer.
My Vanny Voo, My Panda, is the neatest kid. She is very shy in public. In fact, she didnt speak a word to her preschool teacher until two weeks into the school year. At home, she is boisterous and loud, and quirky and funny. She has obsessions, unusual but adorable obsessions. She loves Mario and Nintendo. She loves Wonder Woman. She loves Panda bears. We watched a documentary on an earthquake that had destroyed pandas' habitat and from that day, six months ago, she has been raising money to save the Pandas. Her favorite foods are cooked carrots and broccoli. She will choose broccoli over cookies any day. She idolizes my little brother, her Nintendo friend, who played hours upon hours of Wii with her, including Disney Princess. She calls him her favorite boy buddy. He is flying in to see her, (and the rest of the family) on Tuesday. We will celebrate her birthday with him. She adores my dad, always wanting to call him and inform him of our dinner menu. And if we have green beans she insists we save some for Pap.
She came into the world so tiny but she has made such a huge impact on me and on all of our family. I wait for the day when she warms up to the world, when she steps out of her shyness. World, then you will be truly blessed and amazed by this sweet, funny, full of life little girl.
BFF
Uncle JasonWednesday, December 23, 2009
Turtle speed
I have a quiet house, an almost empty house. My little man is asleep in his crib, the rest of the family is over the river and through the woods to grandma's house. I have finished my baking, my shopping and wrapping and almost all of my cleaning. I am not sure how I pulled it all together and managed to have a quiet house and a clean house and a to do list all checked off but I am very content.
We have had a stressful beginning of the week and the whole month has been one frustration or worry after another. More than just holiday busyness and bills, it seems many things have come to wreak havoc on my peace and my joy. I have to be honest and say I havent felt much peace or joy this holiday month, this my favorite time of year. My heart has been anxious and heavy, my mind full of so many things and such a longing for respite, for peace, for a break in the thunder clouds that seem to be looming overhead, following my days.
It is nice to sit quietly this eveing with a cup of tea and a freshly baked cookie. I can shut out the quest for answers for a few days because the doctors are not even in their offices. I can not worry about the van for a few days because the mechanic can't get to it until next week.
I love that the last few years we have decided to spend Christmas at our home, we are not traveling on Christmas. We can slow the pace down, if just for a few days. I need turtle speed right now. I need to just be with my kids, watch their excitement for Santa and for Jesus build and spill over on us. I need to just watch my baby boy excitedly play with his sisters and crawl all over them. How incredibly simple and beautiful it is to see them happy and playing together. They have been bickering so much, so often and I am frustrated about it. But add Caleb to the mix and the atmosphere is diffused. You cant help but smile when he is smiling so happily.
Such a hard year for us, again. But we are at the end of the year and I am so thankful that we have made the pace deliberately slow. I needed this refreshing. I needed this time of staying in. I needed this time to just be.
Come Monday we will be back to therapies and returning doctors calls and fixing the van and running everywhere but this weekend is a reprieve. Oh I still have concerns and frustrations. My first thought when I awoke today was, Will the doctor have answers today? The answer was no, nope, nada.
I am looking forward to our Christmas eve service tomorrow, it is always beautiful and joyful for me and the kids. I am looking forward to hearing Jason read the Christmas story to the kids tomorrow before bed, one of my favorite family traditions. Jason always does so well with bedtime, so much more patient than me, and more of a storyteller. The kids love his bedtimes and are always bummed out when he is out of town. He started reading the nativity story to the kids when CC was just a baby, when it was just the three of us, now we have doubled our family size. Pretty cool. There is something beautiful about watching him read to our children about Jesus, about our Father, about God's plan and God's gift. I am so happy that I finally feel some anticipation for Christmas, it was so hard this year to get in the mood. I will gladly do Christmas this year at turtle speed and hope that the kids' delight and joy will rub off on to me.
Merry Christmas!
We have had a stressful beginning of the week and the whole month has been one frustration or worry after another. More than just holiday busyness and bills, it seems many things have come to wreak havoc on my peace and my joy. I have to be honest and say I havent felt much peace or joy this holiday month, this my favorite time of year. My heart has been anxious and heavy, my mind full of so many things and such a longing for respite, for peace, for a break in the thunder clouds that seem to be looming overhead, following my days.
It is nice to sit quietly this eveing with a cup of tea and a freshly baked cookie. I can shut out the quest for answers for a few days because the doctors are not even in their offices. I can not worry about the van for a few days because the mechanic can't get to it until next week.
I love that the last few years we have decided to spend Christmas at our home, we are not traveling on Christmas. We can slow the pace down, if just for a few days. I need turtle speed right now. I need to just be with my kids, watch their excitement for Santa and for Jesus build and spill over on us. I need to just watch my baby boy excitedly play with his sisters and crawl all over them. How incredibly simple and beautiful it is to see them happy and playing together. They have been bickering so much, so often and I am frustrated about it. But add Caleb to the mix and the atmosphere is diffused. You cant help but smile when he is smiling so happily.
Such a hard year for us, again. But we are at the end of the year and I am so thankful that we have made the pace deliberately slow. I needed this refreshing. I needed this time of staying in. I needed this time to just be.
Come Monday we will be back to therapies and returning doctors calls and fixing the van and running everywhere but this weekend is a reprieve. Oh I still have concerns and frustrations. My first thought when I awoke today was, Will the doctor have answers today? The answer was no, nope, nada.
I am looking forward to our Christmas eve service tomorrow, it is always beautiful and joyful for me and the kids. I am looking forward to hearing Jason read the Christmas story to the kids tomorrow before bed, one of my favorite family traditions. Jason always does so well with bedtime, so much more patient than me, and more of a storyteller. The kids love his bedtimes and are always bummed out when he is out of town. He started reading the nativity story to the kids when CC was just a baby, when it was just the three of us, now we have doubled our family size. Pretty cool. There is something beautiful about watching him read to our children about Jesus, about our Father, about God's plan and God's gift. I am so happy that I finally feel some anticipation for Christmas, it was so hard this year to get in the mood. I will gladly do Christmas this year at turtle speed and hope that the kids' delight and joy will rub off on to me.
Merry Christmas!
Saturday, December 19, 2009
Dear Crave
Dear Crave,
Since I know you only skim my blog for glimpses of your name in print before you invest fully in reading the material, I thought I would specifically address you tonight. And rightfully so because tonight my thougths are on you. We will be celebrating our annivesary in the morning, can you believe that it has been twelve years since we said, "I do." Sixteen years since our first date, even longer since I first started crushing on you.
I know it has been a rough year for us, stressfull, tiresome, full of concerns for the kids and not enough time for each other. Recently I realized that we have not been dreaming as much as we you used to do. I remember all of our late night talks after curfew in my parents' living room. Remember our in depth conversations on the phone and in the car during college? We were so full of dreams, of expectations for our future. A few weeks ago you mentioned that you wished we were the couple who just up and traveled like we used to. It made me smile and think back on all of our road trips and our nature trips. We arent as portable or as free to travel now days, are we? I know I have been worried over the future and so I have put a hold on dreaming, on expecting. But I am so glad you are walking this out with me, that you are here by my side. I love being the mother of your children. I love co-parenting with you. It is by far the biggest adventure we have been on.
I have figured it out, math genius that I am, we have averaged a child every 3 years of our marriage. Isnt that incredible? I remember when we were dating and discussing having children. You wondered if you would be a good father. I knew you would be. I valued your loyalty and your adventurous spirit. I saw in you a man who would devote his life to his family and to fun. I see you with the girls and Caleb and know I was right. You are so giving and devoted to us and each of our kids has a sillyness factor that is all you.
I remember when you were an engineering student struggling with professors and exams. Working and going to school full time. I did not realize I would personally learn so much about engineering through osmosis but I have over the years. I remember traveling with you to decide which city in which to start your engineering career. Those first years of marriage when it felt like you, me and your engineering friends all co-existed together. I tried out so many recipes on you and your friends. I do not say it often enough but I am proud of you, of your work ethic. I know I tease you about engineering and coal and the endless conversations about permits and water resources but I see how hard you work for us. I also find some of it interesting and fascinating. I remember when we lived in Columbus how quickly I learned shortcuts, only because I was married to an engineer. I still laugh about how I can point out what work projects you did in Columbus ten years ago. My point is that I am so thankful to be involved in watching you evolve and grow as an engineer.
I wish right now we could run away for a weekend or even longer. I know it isnt feasible or practical but it does sound appealing. Thank you so much for understanding where I am as a mother and not putting extra expectations on me. I did not know when we married that life would be this rich, this full of beauty and joy. I love that we still laugh with each other. I love so much about you Crave. I know I have devoted so much time and energy to the kids this year. I know that my heart has been heavy and you have had to carry extra and you have done so without complaining or resenting. I am so thankful for where we are as a couple right now. It has been the hardest year, and a year spent mostly dealing with issues of our children. But I also feel closer to you, more in love and in need of you than I ever have. I am so thankful we are walking this out togther. I still have many dreams and hopes for us. But I am thankful we are living out the biggest dream, to be one, to raise a family, to live life together. The variables do not matter as much. I remember traveling on those interview weekends with you so long ago. We had such an anticipation for what life would bring us, where life would bring us, how we would get there. I have lived enough life with you that I now know that none of it is as important as just being with you. Anywhere.
I would love another nature trip. I have walked off a cliff, went underground, what else could we do? I would love more late night conversations about faith, values, dreams. I would love more long drives with the radio off and you singing to me. Do you remember the year without a radio? Maybe we should take your car out for those, it is hard to feel romantic and carefree in minivan full of carseats and happy meal toys. Do you know what I also love? You coming home to me every evening. I love that this is where we are now as a couple, we are a couple rasing our beautiful kids, walking out our faith, living out our biggest dream. I love you.
Since I know you only skim my blog for glimpses of your name in print before you invest fully in reading the material, I thought I would specifically address you tonight. And rightfully so because tonight my thougths are on you. We will be celebrating our annivesary in the morning, can you believe that it has been twelve years since we said, "I do." Sixteen years since our first date, even longer since I first started crushing on you.
I know it has been a rough year for us, stressfull, tiresome, full of concerns for the kids and not enough time for each other. Recently I realized that we have not been dreaming as much as we you used to do. I remember all of our late night talks after curfew in my parents' living room. Remember our in depth conversations on the phone and in the car during college? We were so full of dreams, of expectations for our future. A few weeks ago you mentioned that you wished we were the couple who just up and traveled like we used to. It made me smile and think back on all of our road trips and our nature trips. We arent as portable or as free to travel now days, are we? I know I have been worried over the future and so I have put a hold on dreaming, on expecting. But I am so glad you are walking this out with me, that you are here by my side. I love being the mother of your children. I love co-parenting with you. It is by far the biggest adventure we have been on.
I have figured it out, math genius that I am, we have averaged a child every 3 years of our marriage. Isnt that incredible? I remember when we were dating and discussing having children. You wondered if you would be a good father. I knew you would be. I valued your loyalty and your adventurous spirit. I saw in you a man who would devote his life to his family and to fun. I see you with the girls and Caleb and know I was right. You are so giving and devoted to us and each of our kids has a sillyness factor that is all you.
I remember when you were an engineering student struggling with professors and exams. Working and going to school full time. I did not realize I would personally learn so much about engineering through osmosis but I have over the years. I remember traveling with you to decide which city in which to start your engineering career. Those first years of marriage when it felt like you, me and your engineering friends all co-existed together. I tried out so many recipes on you and your friends. I do not say it often enough but I am proud of you, of your work ethic. I know I tease you about engineering and coal and the endless conversations about permits and water resources but I see how hard you work for us. I also find some of it interesting and fascinating. I remember when we lived in Columbus how quickly I learned shortcuts, only because I was married to an engineer. I still laugh about how I can point out what work projects you did in Columbus ten years ago. My point is that I am so thankful to be involved in watching you evolve and grow as an engineer.
I wish right now we could run away for a weekend or even longer. I know it isnt feasible or practical but it does sound appealing. Thank you so much for understanding where I am as a mother and not putting extra expectations on me. I did not know when we married that life would be this rich, this full of beauty and joy. I love that we still laugh with each other. I love so much about you Crave. I know I have devoted so much time and energy to the kids this year. I know that my heart has been heavy and you have had to carry extra and you have done so without complaining or resenting. I am so thankful for where we are as a couple right now. It has been the hardest year, and a year spent mostly dealing with issues of our children. But I also feel closer to you, more in love and in need of you than I ever have. I am so thankful we are walking this out togther. I still have many dreams and hopes for us. But I am thankful we are living out the biggest dream, to be one, to raise a family, to live life together. The variables do not matter as much. I remember traveling on those interview weekends with you so long ago. We had such an anticipation for what life would bring us, where life would bring us, how we would get there. I have lived enough life with you that I now know that none of it is as important as just being with you. Anywhere.
I would love another nature trip. I have walked off a cliff, went underground, what else could we do? I would love more late night conversations about faith, values, dreams. I would love more long drives with the radio off and you singing to me. Do you remember the year without a radio? Maybe we should take your car out for those, it is hard to feel romantic and carefree in minivan full of carseats and happy meal toys. Do you know what I also love? You coming home to me every evening. I love that this is where we are now as a couple, we are a couple rasing our beautiful kids, walking out our faith, living out our biggest dream. I love you.
Friday, December 18, 2009
postcard
Today I recieved Christmas cards in the mail along with a nice little postcard from Children's. I thought what could it be, it isnt large enough to be a bill, we do not have any appointments soon so it isnt a reminder card, maybe it is a holiday card. They send birthday cards to each of my kids and requests for donations, so why not a holiday card? I opened the card casually. It was not a holiday card, not a bill, not an appointment reminder. It was a postcard with lab results. A postcard with lab results. Odd. Disconcernting to me. Caleb's future resting on these lab results and they send me a postcard. a postcard. Can you tell I am annonyed? The postcard said one test came back ok. This is the test we knew would come back ok. The card also said please call for a follow up appointment to discuss your other lab results. Wait, what. Are our other lab results not ok? Are they even in? Immediately my mind goes to the bad, they must be in, they must be not ok or why else would we need a follow-up. I have called and left a message for the nurse to return my call and answer my questions. Stupid postcard. I will not freak out because there is no sense in it. They said the other testing would not be in until mid January. So ok breathe.
On a side note, we are expected to get some snow. I am excited. My plans to Christmas shop and to make the girls really clean their room will be put on hold but snow, yeah! And also, I love Christmas cards. I love pictures of friends' kids and pets. I love beautiful religious cards and Santa cards. I am so thankful I received Christmas cards today along with the postcard. The postcard can be burried undereneath pictures of smiling kids and snowmen.
stupid postcard, who sends a postcard anyway?
On a side note, we are expected to get some snow. I am excited. My plans to Christmas shop and to make the girls really clean their room will be put on hold but snow, yeah! And also, I love Christmas cards. I love pictures of friends' kids and pets. I love beautiful religious cards and Santa cards. I am so thankful I received Christmas cards today along with the postcard. The postcard can be burried undereneath pictures of smiling kids and snowmen.
stupid postcard, who sends a postcard anyway?
Thursday, December 17, 2009
no answers yet
We received no answers today and I am so mad about it. Mad when really I should be relieved that there is no structural abnormality. I want an easy answer and an easy fix. Instead we got more blabber, my new word. To me it means, more guesses, more blame it on preemie and walk it out in therapy kind of talk. I am up to my ears in therapy and intentionality. So I am discouraged and frustrated and rearranging my schedule to make room for more therapy sessions and homework. I am relieved that it isnt structural, I didnt want Caleb to require surgery or go on more medicines. We just didnt learn anything today that we didnt already know. Now we have the go ahead, the encouragement, the proof to increase his speech therapy sessions.
I knew one test would not make Caleb magically be able to swallow food without vomitting or choking but I secretly wished upon a star for it, fingers crossed, on my knees praying and wishing. Because every meal, every feeding is stressful, time consuming. Who has time for family time dinner conversation when you are talking your toddler through his gagging and vomitting? It has taken some of the joy out of gathering together as a family.
I know I have been whiny and complaining so much on here lately. I dislike that very much about my life right now. I dont want to be the friend that everyone feels sorry for or tiptoes around. I want to care about more than Caleb's health issues. But the weight of them and the truth of them are pressing down on me right now.
It is 8 days before Christmas, my annivesary is 3 days from now. I do not know how to transition to jolly, happy mom or sexy, excited wife. I have 3 holiday parties this weekend. I need to shop and cook for each of them and I could care less. I lack motivation because I am discouraged and angry and frustrated. I wanted answers today. I did not want to add more therapy to my schedule. We have therapy in an hour already.
Maybe I want God to feel sorry for me, to see me struggling and angry and grant my wish.
What I really want is for Caleb to be able to eat normally. I want the 'gather around the dinner table with laughter and fun' and not what we have now. I feel as though I am a pretty calm, laid back, flexible kind of person. I go with the flow, I change, I adjust. I am not patient but I am flexible, moldable. Do I really needed molded this much? And wow, how shallow am I that I put all this on me as though it is only about me. It isnt.
We are blessed with a therapy team that encourages and listens and empathizes. Caleb's therapists adore him and gush over him and he returns the favor. But they also see me, understand how hard this is on our whole family. They have been kind and considerate and affirming. They always give exercises to get the girls involved in Caleb's care. It makes the girls feel included, involved. His therapists have invested in Caleb's progress and they never undervalue my role. And so I hate that I am venting and feeling frustrated over more therapy. For me it is more of a struggle in realizing how in depth is the influence of his prematurity. We struggled with feeding issues over 15 months ago in the NICU and now, and still, strugging.
Holiday cheer is hard for me to muster. But I can offer gratitude for the gifts, even amidst struggle, that I have received. I am so thankful that my son is home with us, I am so thankful for my beautiful daugthers. I am more in love with my husband than ever before. I have amazing friends and family. I have a network of people who love and work with my son. The holidays are not as easy and carefree for me this year but I do still celebrate Jesus. I desperately want answers to many things concerning Caleb. I also want rest, peace.
I knew one test would not make Caleb magically be able to swallow food without vomitting or choking but I secretly wished upon a star for it, fingers crossed, on my knees praying and wishing. Because every meal, every feeding is stressful, time consuming. Who has time for family time dinner conversation when you are talking your toddler through his gagging and vomitting? It has taken some of the joy out of gathering together as a family.
I know I have been whiny and complaining so much on here lately. I dislike that very much about my life right now. I dont want to be the friend that everyone feels sorry for or tiptoes around. I want to care about more than Caleb's health issues. But the weight of them and the truth of them are pressing down on me right now.
It is 8 days before Christmas, my annivesary is 3 days from now. I do not know how to transition to jolly, happy mom or sexy, excited wife. I have 3 holiday parties this weekend. I need to shop and cook for each of them and I could care less. I lack motivation because I am discouraged and angry and frustrated. I wanted answers today. I did not want to add more therapy to my schedule. We have therapy in an hour already.
Maybe I want God to feel sorry for me, to see me struggling and angry and grant my wish.
What I really want is for Caleb to be able to eat normally. I want the 'gather around the dinner table with laughter and fun' and not what we have now. I feel as though I am a pretty calm, laid back, flexible kind of person. I go with the flow, I change, I adjust. I am not patient but I am flexible, moldable. Do I really needed molded this much? And wow, how shallow am I that I put all this on me as though it is only about me. It isnt.
We are blessed with a therapy team that encourages and listens and empathizes. Caleb's therapists adore him and gush over him and he returns the favor. But they also see me, understand how hard this is on our whole family. They have been kind and considerate and affirming. They always give exercises to get the girls involved in Caleb's care. It makes the girls feel included, involved. His therapists have invested in Caleb's progress and they never undervalue my role. And so I hate that I am venting and feeling frustrated over more therapy. For me it is more of a struggle in realizing how in depth is the influence of his prematurity. We struggled with feeding issues over 15 months ago in the NICU and now, and still, strugging.
Holiday cheer is hard for me to muster. But I can offer gratitude for the gifts, even amidst struggle, that I have received. I am so thankful that my son is home with us, I am so thankful for my beautiful daugthers. I am more in love with my husband than ever before. I have amazing friends and family. I have a network of people who love and work with my son. The holidays are not as easy and carefree for me this year but I do still celebrate Jesus. I desperately want answers to many things concerning Caleb. I also want rest, peace.
Monday, December 14, 2009
names
I have been struggling recently with worry, with the weight of a an unknown future, with fear of my own capabilities as a mother, with frustration and anger over others' offerings and reactions to me. I also have this large sense of irony and of disbelief; how 16 months after Caleb's birth could we still have this much strife, this much unknown about his future and his present. How can we still be on a rollercoaster? And the biggest statement in my heart is that it isnt fair!!!
It really does feel like a perpetual rollercoaster and I am not a fan of rollercoasters. I don't like the out of control feeling or the waves of nausea that can overtake me on a rollercoaster. I have those emotions right now.
In the last month it has been one thing after another with Caleb: hospitalizations, new diagnosis and treatment options, new tests run and new grim predictions. I have been intentionally vague and guarded about his recent doctor appointments. I am guarding my heart from others' viewpoints. I am trying to prevent discussion that may get back to my little girls' ears and cause uneeded stress and concern. And there is also a frustration that we still dont know much, that we are still waiting for answers, waiting for things to happen or not happen. I feel as though I have been waiting for a long time and I am pissy about it. I struggle with fear of his future on some days. If the neurologist is correct our life, our future will change in ways I never expected or wanted. So my heart is weary. Physically our therapy schedule is tiresome and draining. I am a stay at home mom who never seems to be home anymore. Just last week I was begging for a snowday so I could just be home with all four kids for fun. I am sure the snow will come soon, but to me not soon enough!
I am not sure where my faith is in all of this. I know it is here but I havent faced it yet if that makes any sense. I have just been in shock, in fear, in anger, in hurt. I have been wanting a day to just go in my room and cry and feel sorry for myself but havent had the time or the privacy for that. How sad is that! But I have felt that way, God just give me some time to cry and vent and grieve and be mad, then I will handle this head on with strength and hope. I know God can move me past the worry stage and the what if stage but I feel like I have planted my feet there for now.
I have been reminded of Caleb's name and of how Jason and I both really felt his name was given to us, directed to us by God. I had been set on naming our son Pierce since before we even married. Jason was set on Chadwick, a family name for generations, for our son's middle name. Pierce Chadwick was the name we had discussed and appointed for a son of ours before we even walked down the aisle to wed. Years later, we conceive that anticipated son. Do you know we almost named him Bronco. Jason wanted that name and I was just so happy to be pregnant with a son, we could have named him anything. But then the pregnancy became scary and high risk and we both grapled with the uncertainty. I had been reading Joshua, in the Bible. We both felt the desire to recognize God's hand in our life. We chose Caleb and then Rafe, Caleb Rafe, our courageous son who would be healed by God. I held on to the meaning of his name, the promise of his name all those long months in the NICU. Caleb of the Bible did not let fear or other's beliefs rein in his life, he chose to believe in the power of God. And so in my heart in the last few weeks I have struggled with the irony of our situation now, the irony of my belief in Caleb's name. Can I believe that God is more powerful than a lifelong medical handicap? It is easy to say yes when that situation isnt about your son, your sweet child. I can say that my faith falters, waivers. I struggle in knowing if I am capable to walk out that diagnosis. Yesterday at church I began the process of letting go. Of crying out to God, just crying out. I want my son healed, fully restored. I am tired of therapies, I am tired of doctors, I am tired of everything being so different and intentional and hard. I am tired of worrying about the girls emotional struggle in all of this. Tired of having to extend grace to others when I want grace given to me. Tired of running here to there, tired of trying to decide who needs me more. I want all of Caleb to be whole, and I want it now. Do I believe God can do this? Absolutely, I have seen him work many miracles. Will he do this? I dont know. I dont know. I dont know. For me there is a relief in writing that sentence. There is a relief in just admitting where I am at and allowing God to work out the rest. I want desperatley to be able to look at Caleb and take him as he is now, to enjoy him as he is now. I dont want to look at him and look for indicators of what is wrong, what might be wrong. So that is my focus for this week, to just enjoy Caleb. Can you imagine if we had named him Bronco? Ha!
It really does feel like a perpetual rollercoaster and I am not a fan of rollercoasters. I don't like the out of control feeling or the waves of nausea that can overtake me on a rollercoaster. I have those emotions right now.
In the last month it has been one thing after another with Caleb: hospitalizations, new diagnosis and treatment options, new tests run and new grim predictions. I have been intentionally vague and guarded about his recent doctor appointments. I am guarding my heart from others' viewpoints. I am trying to prevent discussion that may get back to my little girls' ears and cause uneeded stress and concern. And there is also a frustration that we still dont know much, that we are still waiting for answers, waiting for things to happen or not happen. I feel as though I have been waiting for a long time and I am pissy about it. I struggle with fear of his future on some days. If the neurologist is correct our life, our future will change in ways I never expected or wanted. So my heart is weary. Physically our therapy schedule is tiresome and draining. I am a stay at home mom who never seems to be home anymore. Just last week I was begging for a snowday so I could just be home with all four kids for fun. I am sure the snow will come soon, but to me not soon enough!
I am not sure where my faith is in all of this. I know it is here but I havent faced it yet if that makes any sense. I have just been in shock, in fear, in anger, in hurt. I have been wanting a day to just go in my room and cry and feel sorry for myself but havent had the time or the privacy for that. How sad is that! But I have felt that way, God just give me some time to cry and vent and grieve and be mad, then I will handle this head on with strength and hope. I know God can move me past the worry stage and the what if stage but I feel like I have planted my feet there for now.
I have been reminded of Caleb's name and of how Jason and I both really felt his name was given to us, directed to us by God. I had been set on naming our son Pierce since before we even married. Jason was set on Chadwick, a family name for generations, for our son's middle name. Pierce Chadwick was the name we had discussed and appointed for a son of ours before we even walked down the aisle to wed. Years later, we conceive that anticipated son. Do you know we almost named him Bronco. Jason wanted that name and I was just so happy to be pregnant with a son, we could have named him anything. But then the pregnancy became scary and high risk and we both grapled with the uncertainty. I had been reading Joshua, in the Bible. We both felt the desire to recognize God's hand in our life. We chose Caleb and then Rafe, Caleb Rafe, our courageous son who would be healed by God. I held on to the meaning of his name, the promise of his name all those long months in the NICU. Caleb of the Bible did not let fear or other's beliefs rein in his life, he chose to believe in the power of God. And so in my heart in the last few weeks I have struggled with the irony of our situation now, the irony of my belief in Caleb's name. Can I believe that God is more powerful than a lifelong medical handicap? It is easy to say yes when that situation isnt about your son, your sweet child. I can say that my faith falters, waivers. I struggle in knowing if I am capable to walk out that diagnosis. Yesterday at church I began the process of letting go. Of crying out to God, just crying out. I want my son healed, fully restored. I am tired of therapies, I am tired of doctors, I am tired of everything being so different and intentional and hard. I am tired of worrying about the girls emotional struggle in all of this. Tired of having to extend grace to others when I want grace given to me. Tired of running here to there, tired of trying to decide who needs me more. I want all of Caleb to be whole, and I want it now. Do I believe God can do this? Absolutely, I have seen him work many miracles. Will he do this? I dont know. I dont know. I dont know. For me there is a relief in writing that sentence. There is a relief in just admitting where I am at and allowing God to work out the rest. I want desperatley to be able to look at Caleb and take him as he is now, to enjoy him as he is now. I dont want to look at him and look for indicators of what is wrong, what might be wrong. So that is my focus for this week, to just enjoy Caleb. Can you imagine if we had named him Bronco? Ha!
Tuesday, December 8, 2009
today
Today I am tired and have a horrible headache. I am considering cancelling Caleb's therapy appointment but no, I won't actually do that. Today we are going to specifically work on feeding issues so I feel like we need to be there. He also had such a bad, nonproductive therapy yesterday that I feel like he needs this one today. He has been agiated over the weekend and into yesterday. Fearful of the dark now, not wanting to be held but not wanting us to leave his sight. His little arms and hands are bruised from all the blood draws and he is very sensitive over them. All the progress we made in the last two weeks is gone. He loves, adores, is ga ga over his PT. Yesterday he crawled from her to me and back and just laid his head in our laps. As soon as one of us tried to pick him up to comfort him, he stiffened and arched away from us. He didnt go ga ga yesterday, he seemed exhausted. His sleep patterns are starting to change, as in waking many times at night and so he probably is exhausted. His room is next to ours, I hear him in there. He doesnt cry, he just moves around in his crib. He didnt want to play yesterday so maybe Friday and the weekend were overwhelming for him as well.
Today he is gleeful again, animated and happy to see Vanny and Sweetie the cat, his favorite toy.
Yesterday was a particulary hard day for me, exhaustion, stress, emotion, worry, all caught up with me. Someone said something to make me feel better that in actuality made me feel so much worse. I must be raw emotionally right now. The girls were bickering and I am so sick of the bickering. Senny Sunshine is in an arm sling from a chipped elbow. Geez, as if we needed one more thing. All I wanted was to hear Ja's voice, I wanted to check in with him but he was unavailabe until he walked in the door after six last night. I struggled on my own yesterday. I cried uncontrollably while I cooked dinner. I am sure I worried the girls. They came in with hugs and promises to do anything if I would stop crying. That made me want to cry more, I dont want them to have to carry any extra burden or worry. Ja came home, we had a yummy dinner. Then, he and I sat on the couch by the tree and he just held me. It's what I needed, it calmed me, he calmed me. He said nothing, made no assurances, he just held me. And I realized and appreciated once again the value of touch in a relationship.
Today I am feeling the need to focus on something bigger than I, bigger than our situation. I could easily distract myself with things to do, or research, or with movies and books and tv. Part of me is drawn to the distraction, drawn to the ease of investing in the drama of a movie or book rather than dealing with my own drama in any way. I remember the comfort I felt last night being in Ja's arms, in connecting with him, in not feeling alone. My marriage is bigger than I am alone but it isnt bigger than our situation. The only thing to me bigger than our sitation is my relationship with God, my dependence on Jesus. I am not going to describe it, I dont want to feel like I am sermonizing. I just know that at this stage, in the waiting and questioning period of our medical drama, I need to trust something more than the science of medicine. We do not have any answers, only more questions and routes to go. I could drive myself crazy with this, and have some. Today I have decided to just trust that God is working in whatever is my greatest need, he has so far. And to calm myself with scripture and reflcetion.
In this blog post today I realize I have talked much about time, "yesterday, today, now, in the future." All of these have consumed my time and my concern. Is what happened in the past going to affect our future like it affects our now? Is the behavior and conditions he had in the past and the ones he is displaying now, clues to a future diagnosis and prognosis? How can I decipher those clues. These thoughts have consumed me, ate at me. And I need to stop them. So I am working on that right now. Right now I have a naked girl playing Barbies, a baby chasing a cat, a sparkly, twinkling Christmas tree, and a glass a coke to take the edge of this headache... and the hope and comfort found in God's promises and his stories.
Today he is gleeful again, animated and happy to see Vanny and Sweetie the cat, his favorite toy.
Yesterday was a particulary hard day for me, exhaustion, stress, emotion, worry, all caught up with me. Someone said something to make me feel better that in actuality made me feel so much worse. I must be raw emotionally right now. The girls were bickering and I am so sick of the bickering. Senny Sunshine is in an arm sling from a chipped elbow. Geez, as if we needed one more thing. All I wanted was to hear Ja's voice, I wanted to check in with him but he was unavailabe until he walked in the door after six last night. I struggled on my own yesterday. I cried uncontrollably while I cooked dinner. I am sure I worried the girls. They came in with hugs and promises to do anything if I would stop crying. That made me want to cry more, I dont want them to have to carry any extra burden or worry. Ja came home, we had a yummy dinner. Then, he and I sat on the couch by the tree and he just held me. It's what I needed, it calmed me, he calmed me. He said nothing, made no assurances, he just held me. And I realized and appreciated once again the value of touch in a relationship.
Today I am feeling the need to focus on something bigger than I, bigger than our situation. I could easily distract myself with things to do, or research, or with movies and books and tv. Part of me is drawn to the distraction, drawn to the ease of investing in the drama of a movie or book rather than dealing with my own drama in any way. I remember the comfort I felt last night being in Ja's arms, in connecting with him, in not feeling alone. My marriage is bigger than I am alone but it isnt bigger than our situation. The only thing to me bigger than our sitation is my relationship with God, my dependence on Jesus. I am not going to describe it, I dont want to feel like I am sermonizing. I just know that at this stage, in the waiting and questioning period of our medical drama, I need to trust something more than the science of medicine. We do not have any answers, only more questions and routes to go. I could drive myself crazy with this, and have some. Today I have decided to just trust that God is working in whatever is my greatest need, he has so far. And to calm myself with scripture and reflcetion.
In this blog post today I realize I have talked much about time, "yesterday, today, now, in the future." All of these have consumed my time and my concern. Is what happened in the past going to affect our future like it affects our now? Is the behavior and conditions he had in the past and the ones he is displaying now, clues to a future diagnosis and prognosis? How can I decipher those clues. These thoughts have consumed me, ate at me. And I need to stop them. So I am working on that right now. Right now I have a naked girl playing Barbies, a baby chasing a cat, a sparkly, twinkling Christmas tree, and a glass a coke to take the edge of this headache... and the hope and comfort found in God's promises and his stories.
Saturday, December 5, 2009
I am
Trying to be authentic without being hurtful, my heart is heavy tonight. My mind is racing but not with worry, not with lists of things to do or buy, not with praises. My mind is racing with things I would like to say, of responses I would like to give, of how I would like to defend and protect myself and my mothering view. My mind is racing with things people shouldnt say, reasons why they say them, how I would LOVE to respond. Thankfully, the lessons my mom and dad tried to teach me all those teenage years ago, those lessons have stuck. I will not "talk back," I will not respond in anger or sass. And let me assure you this girl, this woman I guess, she still has a lot of sass. What I have now I lacked in high school is class, self-control maybe? NO actually it is just grace, grace to give because much has been given to me.
Leading up to Friday was stressful for me, we had put such emphasis on this neurology appointment for our sweet little guy. We have been waiting for so long for answers and my anxiety was high going into Friday. Our answers did not come, only more questions and more instructions to wait. We even have a new path to walk out is some ways. My anxiety is so-so. I cant say it is gone, erased but it has eased in some ways. That one appointment was not the one and only appointment that would forecast our son's future and prognosis. Friday was just the first of a few appointments we will have with neuro. Intersting turn of events for me, I was hoping to cross that specialist off our list of places for a former micro-preemie to visit. I wish we knew more, I wish we were not chasing down more possible diagnosis. I wish we had not had to schedule more tests. I wish some of those tests were not already in the process.
Caleb had blood drawn on Friday, it was traumatic for both of us. As I held him down and they dug around in his tiny little hands and arms, I saw all the progress we had made in the last two weeks of intentional massage and trust building just disappear. I couldnt stop his tears or mine. I know the blood draw was only moments of his life and it was necessary. I also know that my little boy struggles very much with sensory issues and feels very defensive about having his arms and particulary his hands held. His trust was broken and I helped in doing that. I know if you do not have a child with sensory issues you may not understand this and think I am being overly dramatic but let me assure you I am not. Caleb's sensory and defensive issues are huge to us, they inhibit his play and his abilty to self-feed or explore with his hands. I was more concerned for that on Friday than on what the blood work might reveal. I was also more concerned over the timing of the scheduling of the sedating for the MRI than of the actual results of the MRI. I didnt want the sedation to cause more trach issues or more oral motor issues for a boy who already has such issues with oral-motor. The results of the MRI were secondary to the immediate need to protect him, his airway, his fear of anything near his mouth or throat.
My sweet little boy, I love him so. Our neurology doctor was very kind but we did have to go over his birth story, my pregnancy complications, our hosptilizations. It is hard to believe it can all be condensed on one side of a medical form. It is so stretched out in my mind, so complicated. The doctor also wanted to know what I felt was "WRONG" with my child. No mother should have to answer that question. How do you catalog your response, how do you justify it when part of you feels it is a betrayal to admit anything is abnormal or not quite "Right" with your child. Our doctor was patient and gentle in his questions and responses. He did not rush me and he brought me alongside his thoughts and medical directions. I am more accustomed to a list of doctor's orders and a time table to fullfill them without much time and patience for discussion and questioning. Neonate clinic is abrupt, rushed, clinical. Neurology was patient, compassionate, and informed. I am so thankful for that treatment.
Over the weekend I have felt the need to protect myself, defend myself. I even wanted to go so far as to write a list of responses I thought would be appropriate to say to me. I often have them running in my head during conversations or shorlty after, what I would like to say, what I really want to say, what I meant to say, what I shouldnt have said. Also, what others should have said to me, what they should not have said, why they dont understand what they said was wrong, etc..
I have been mulling over this blog, wondering if I share too much or not enough. I will admit that I am sensitive, I have always been. I used to hate that about myself, condemn myself for my sensitivity. I have come to appreciate it and view it differently. Sensitivity can be beautiful if not abused, just like any superpower. I can be sensitive and not be easily offended or too self-aware that I become prideful. I can be compassionate to others because I feel things on a deep level. I believe more people should be authentic and vulnerable. I strive to be authentic, real, true to my feelings.
And so I am going to be honest, risk being criticized or misunderstood and say this, my true feelings are hurt. Hurt,not by any one person or comment, not hurt by the overal situation. Hurt by generalizations and common practices. I have a wise friend who says people feel a great need to rescue others. We want to make others feel better, sometimes because we genuinely care, sometimes because sadness or pain make us uncomfortable. Often times we rush into statements without thinking, I have done it, may even be doing it now. But I am hurt, by people, by statements that tend to deny the reality of my current situation, statements that refuse to allow me to feel what I feel in the moment.
I cannot deny that our situation currently is a child who was referred by several doctors, not just one, to a neurologist. I cannot deny that our son lags behind developmentally in every aspect. I cannot deny that our son does not speak, does not eat like a baby half his age. Half his age. Not 3 months adjusted, but half his age. I cannot deny that every test he has done developmentally, he has had significant delays across the board. I cannot say he is just doing just fine when he is not. Please do not expect this from me anymore. Please do not chide me or dismiss me when I say yes I do think something is wrong with my son. It is a most uncomfortable statement for me to make as his Mommy. I feel my own mommy guilt from saying it, my own traitorish spirit, I do not need your guilt heeped on to my own. Please do not question my faith or my prayer life or my belief that God is bigger than anything else I know. I know the truth of Jesus in my life. I do not need reprimands for my lack of praise. I know more than anyone how far we have come. I felt my son stop moving in my womb, I knew the day he would need to come out. I watched him have machines breathe for him, I know how far he has come, I know what God has done. But I cannot deny the reality of our current situation. I cannot deny that we need, yes we needed a neurology consult, a genetic consult even. I cannot deny that my son has severe sensory and fear issues. I deal with them daily.
I know now that I am talking back, I guess that is still in me. But I am not feeling the need to slam a door, so progress from my teenage years. I know I am on emotion overload tonight. I just feel I am at this place where I cannot deny the reality of our situation. I am thankful I have so many people who care for us, who are involved in our lives, who have been on this journey with us. The truth of my situation is that I can not say with certainity if my son has developmental delays that will in time correct themselves or if he will eventually plateau in development. The doctors have said that they cannot give us that answer yet either. The bigger truth is that I know that no matter my situation, my family's situation, God is bigger and God is in the details. The truth is that I need the people in my life to take me as I am, take us as our situation is now. Right now I am a mom who is adjusting to having a special needs child. I am a mom who is struggling to meet the needs of each child, to determine which need comes first. I am a mom who is realizing that mothering more than one child is a balancing act. I am a mom who needs a good cry, needs to process some things, needs to work out her own faith issues. I am a woman who is sensitive and vulnerable and authentic. I dont need to feel better about my situation, I just need to be truthful in it.
When I mouthed off as a teenager, my mom made me do dishes, I hate dishes. If I have truly offended anyone, please tell me and I will come and do your dishes.
Leading up to Friday was stressful for me, we had put such emphasis on this neurology appointment for our sweet little guy. We have been waiting for so long for answers and my anxiety was high going into Friday. Our answers did not come, only more questions and more instructions to wait. We even have a new path to walk out is some ways. My anxiety is so-so. I cant say it is gone, erased but it has eased in some ways. That one appointment was not the one and only appointment that would forecast our son's future and prognosis. Friday was just the first of a few appointments we will have with neuro. Intersting turn of events for me, I was hoping to cross that specialist off our list of places for a former micro-preemie to visit. I wish we knew more, I wish we were not chasing down more possible diagnosis. I wish we had not had to schedule more tests. I wish some of those tests were not already in the process.
Caleb had blood drawn on Friday, it was traumatic for both of us. As I held him down and they dug around in his tiny little hands and arms, I saw all the progress we had made in the last two weeks of intentional massage and trust building just disappear. I couldnt stop his tears or mine. I know the blood draw was only moments of his life and it was necessary. I also know that my little boy struggles very much with sensory issues and feels very defensive about having his arms and particulary his hands held. His trust was broken and I helped in doing that. I know if you do not have a child with sensory issues you may not understand this and think I am being overly dramatic but let me assure you I am not. Caleb's sensory and defensive issues are huge to us, they inhibit his play and his abilty to self-feed or explore with his hands. I was more concerned for that on Friday than on what the blood work might reveal. I was also more concerned over the timing of the scheduling of the sedating for the MRI than of the actual results of the MRI. I didnt want the sedation to cause more trach issues or more oral motor issues for a boy who already has such issues with oral-motor. The results of the MRI were secondary to the immediate need to protect him, his airway, his fear of anything near his mouth or throat.
My sweet little boy, I love him so. Our neurology doctor was very kind but we did have to go over his birth story, my pregnancy complications, our hosptilizations. It is hard to believe it can all be condensed on one side of a medical form. It is so stretched out in my mind, so complicated. The doctor also wanted to know what I felt was "WRONG" with my child. No mother should have to answer that question. How do you catalog your response, how do you justify it when part of you feels it is a betrayal to admit anything is abnormal or not quite "Right" with your child. Our doctor was patient and gentle in his questions and responses. He did not rush me and he brought me alongside his thoughts and medical directions. I am more accustomed to a list of doctor's orders and a time table to fullfill them without much time and patience for discussion and questioning. Neonate clinic is abrupt, rushed, clinical. Neurology was patient, compassionate, and informed. I am so thankful for that treatment.
Over the weekend I have felt the need to protect myself, defend myself. I even wanted to go so far as to write a list of responses I thought would be appropriate to say to me. I often have them running in my head during conversations or shorlty after, what I would like to say, what I really want to say, what I meant to say, what I shouldnt have said. Also, what others should have said to me, what they should not have said, why they dont understand what they said was wrong, etc..
I have been mulling over this blog, wondering if I share too much or not enough. I will admit that I am sensitive, I have always been. I used to hate that about myself, condemn myself for my sensitivity. I have come to appreciate it and view it differently. Sensitivity can be beautiful if not abused, just like any superpower. I can be sensitive and not be easily offended or too self-aware that I become prideful. I can be compassionate to others because I feel things on a deep level. I believe more people should be authentic and vulnerable. I strive to be authentic, real, true to my feelings.
And so I am going to be honest, risk being criticized or misunderstood and say this, my true feelings are hurt. Hurt,not by any one person or comment, not hurt by the overal situation. Hurt by generalizations and common practices. I have a wise friend who says people feel a great need to rescue others. We want to make others feel better, sometimes because we genuinely care, sometimes because sadness or pain make us uncomfortable. Often times we rush into statements without thinking, I have done it, may even be doing it now. But I am hurt, by people, by statements that tend to deny the reality of my current situation, statements that refuse to allow me to feel what I feel in the moment.
I cannot deny that our situation currently is a child who was referred by several doctors, not just one, to a neurologist. I cannot deny that our son lags behind developmentally in every aspect. I cannot deny that our son does not speak, does not eat like a baby half his age. Half his age. Not 3 months adjusted, but half his age. I cannot deny that every test he has done developmentally, he has had significant delays across the board. I cannot say he is just doing just fine when he is not. Please do not expect this from me anymore. Please do not chide me or dismiss me when I say yes I do think something is wrong with my son. It is a most uncomfortable statement for me to make as his Mommy. I feel my own mommy guilt from saying it, my own traitorish spirit, I do not need your guilt heeped on to my own. Please do not question my faith or my prayer life or my belief that God is bigger than anything else I know. I know the truth of Jesus in my life. I do not need reprimands for my lack of praise. I know more than anyone how far we have come. I felt my son stop moving in my womb, I knew the day he would need to come out. I watched him have machines breathe for him, I know how far he has come, I know what God has done. But I cannot deny the reality of our current situation. I cannot deny that we need, yes we needed a neurology consult, a genetic consult even. I cannot deny that my son has severe sensory and fear issues. I deal with them daily.
I know now that I am talking back, I guess that is still in me. But I am not feeling the need to slam a door, so progress from my teenage years. I know I am on emotion overload tonight. I just feel I am at this place where I cannot deny the reality of our situation. I am thankful I have so many people who care for us, who are involved in our lives, who have been on this journey with us. The truth of my situation is that I can not say with certainity if my son has developmental delays that will in time correct themselves or if he will eventually plateau in development. The doctors have said that they cannot give us that answer yet either. The bigger truth is that I know that no matter my situation, my family's situation, God is bigger and God is in the details. The truth is that I need the people in my life to take me as I am, take us as our situation is now. Right now I am a mom who is adjusting to having a special needs child. I am a mom who is struggling to meet the needs of each child, to determine which need comes first. I am a mom who is realizing that mothering more than one child is a balancing act. I am a mom who needs a good cry, needs to process some things, needs to work out her own faith issues. I am a woman who is sensitive and vulnerable and authentic. I dont need to feel better about my situation, I just need to be truthful in it.
When I mouthed off as a teenager, my mom made me do dishes, I hate dishes. If I have truly offended anyone, please tell me and I will come and do your dishes.
Friday, December 4, 2009
Giant Mess, that is me
These are the things I am worrying about tonight:
1. Caleb's dr. appt today
2. My vulnerablitly and the balance between authentic and open vs. private and safe
3. What is wrong with my van and how much of our Christmas budget is going to go into fixing it
4. What wii games can I get Vanny for Christmas, I obsessed over this tonight instead of dealing with other issues.
5. I need to prepare for teaching Sunday School, physically and spiritually
6. Why have I been so impatient with CC lately?
7. I need to get in the Christmas spirit and today sent me for a loop.
On Thursday I talked about worry with some girlfriends and how God wants us to respond to our worry. We had a beautiful scripture verse and wise instruction, obviously. But it is not happening for me tonight. I am sucumbing to worry. (oh big word but I may have mispelled it)
It is midnight. I sent out an S.O.S. to a couple friends. I am so thankful for friends, for those who are my safe place to be. I am feeling very chafed tonight, very vulnerable, I could sigh a hundred times and still not express my melancholy and frustration tonight.
And so I took my major concerns, filed them away, and decided to obsess about Wii games for my four year old. And then got angry when my husband, her father, was not as obsessive. He was able to kindly, gently give me some perspective on how I was avoiding real issues. As long as the four year old has a stuffed panda under the tree, she will be happy. My real issues, well I decided to list out the rest of worries in the hopes of facing them. I think I a can face all but the first right now. But that is why I have friends who listen and just affirm. I am all over the place in this blog. Obviously because it is midnight and I have been up since four. And because I am a jumble of emotions and worry tonight.
Isnt it funny, how I am at a very stressful and sad point, and can find reasons to discredit and put down myself (exhibit 4-7) I shouldnt do that!
I need to just be the mom who is struggling to find time or joy in all the extras of this holiday season. Even the tree seems daunting to me tomorrow. (7)
And no girls I dont want to watch one of the 25 days of Christmas movies with you, I want to get on the computer and research genetics. (6)
I am teaching about the family tree of Jesus on Sunday and examing our own family trees with the kids. And I just spent this afternoon looking at my family tree for medical defects. (5)
Ha, ho ho ho, merry christmas.
And yes I am feeling vulnerable about this blog for so many reasons tonight. One because it is jumbled and rambled and everyone is going to think I am on crack. Also because I am open and honest but also extremely sensitive and vulnerable. Plus, in the back of my mind I know I mispell and misuse words on here but do not go back and change them very often. Takes the fun out of my spontaneous writing. Or I am just lazy?
So why write this blog? Because simply I write to process, I have since childhood. Ok so write it but dont post it? Thought about it but I made a promise to God and myself last year that I would walk this out loud for Him and for me. I wouldnt pretend that things were fine when they werent. I wouldnt act like I had it together when I dont. I wouldnt deny what He has done for me. And so here I am tonight a giant mess, but not smoking crack, I promise. But a giant mess who is not ready to talk about the neuro appointment, so please dont ask. A blog will be forthcoming at some point. But you will just have to join me in my learning how to wait. WAIT!!! Tonight I am not a patient watier.
Geez Louise I am tired. Let's also hope the tree we get tomorrow does not have a nest of praying mantis like our last "real" tree. ha, HO HO HO.
1. Caleb's dr. appt today
2. My vulnerablitly and the balance between authentic and open vs. private and safe
3. What is wrong with my van and how much of our Christmas budget is going to go into fixing it
4. What wii games can I get Vanny for Christmas, I obsessed over this tonight instead of dealing with other issues.
5. I need to prepare for teaching Sunday School, physically and spiritually
6. Why have I been so impatient with CC lately?
7. I need to get in the Christmas spirit and today sent me for a loop.
On Thursday I talked about worry with some girlfriends and how God wants us to respond to our worry. We had a beautiful scripture verse and wise instruction, obviously. But it is not happening for me tonight. I am sucumbing to worry. (oh big word but I may have mispelled it)
It is midnight. I sent out an S.O.S. to a couple friends. I am so thankful for friends, for those who are my safe place to be. I am feeling very chafed tonight, very vulnerable, I could sigh a hundred times and still not express my melancholy and frustration tonight.
And so I took my major concerns, filed them away, and decided to obsess about Wii games for my four year old. And then got angry when my husband, her father, was not as obsessive. He was able to kindly, gently give me some perspective on how I was avoiding real issues. As long as the four year old has a stuffed panda under the tree, she will be happy. My real issues, well I decided to list out the rest of worries in the hopes of facing them. I think I a can face all but the first right now. But that is why I have friends who listen and just affirm. I am all over the place in this blog. Obviously because it is midnight and I have been up since four. And because I am a jumble of emotions and worry tonight.
Isnt it funny, how I am at a very stressful and sad point, and can find reasons to discredit and put down myself (exhibit 4-7) I shouldnt do that!
I need to just be the mom who is struggling to find time or joy in all the extras of this holiday season. Even the tree seems daunting to me tomorrow. (7)
And no girls I dont want to watch one of the 25 days of Christmas movies with you, I want to get on the computer and research genetics. (6)
I am teaching about the family tree of Jesus on Sunday and examing our own family trees with the kids. And I just spent this afternoon looking at my family tree for medical defects. (5)
Ha, ho ho ho, merry christmas.
And yes I am feeling vulnerable about this blog for so many reasons tonight. One because it is jumbled and rambled and everyone is going to think I am on crack. Also because I am open and honest but also extremely sensitive and vulnerable. Plus, in the back of my mind I know I mispell and misuse words on here but do not go back and change them very often. Takes the fun out of my spontaneous writing. Or I am just lazy?
So why write this blog? Because simply I write to process, I have since childhood. Ok so write it but dont post it? Thought about it but I made a promise to God and myself last year that I would walk this out loud for Him and for me. I wouldnt pretend that things were fine when they werent. I wouldnt act like I had it together when I dont. I wouldnt deny what He has done for me. And so here I am tonight a giant mess, but not smoking crack, I promise. But a giant mess who is not ready to talk about the neuro appointment, so please dont ask. A blog will be forthcoming at some point. But you will just have to join me in my learning how to wait. WAIT!!! Tonight I am not a patient watier.
Geez Louise I am tired. Let's also hope the tree we get tomorrow does not have a nest of praying mantis like our last "real" tree. ha, HO HO HO.
Sunday, November 29, 2009
Gulp
Friday we meet with the neurologist. I just had to write out that sentence to see if it would seem more real after I read it in print. This sentence has been running through my head all of today. It still seem so unreal on different levels, even after seeing it in print staring right back at me.
We have waited so long for this appointment, It's been recommended, postponed, rescheduled, and now it is almost here. It seem unreal because it seems so long in the making. From the first time I saw Caleb when the doctors pointed to his tiny head and said this is where his brain bleed is and we waited and prayed. To a few weeks later when they said his ultrasound showed some unusual things and we may be looking at brain surgery, what? It was my biggest fear after the fear of his death of course, the fear that he would have life long major handicaps. And we have been up and down this rollercoaster ride with him, from one opinion to another. But we have been waiting for the year one neuro appointment and it is finally here. What? It is finally here, you mean I may have answers on Friday? Realistically, we already have some of those answers, other answers seem possible but unlikely, others only time will tell. We have seen so many other specialists in the last year I am not sure why I have placed so much emphasis on this one appointment. I have a huge packet to fill out this week. I have had the packet since February, last minute Chris, yep that's me. His birth history is all fuzzy to me, I was waiting on his medical records for some of the questions. Other questions, we just didnt know the answer to yet, he wasnt developmentally there yet. And mostly, I have answered enough questions in the last year, I wanted to table this until I had to deal with it. Now I have to deal with it. Stupid paperwork.
I am on edge tonight, the kids are asleep, the house is quiet, and I am trying to plan out this busy week, and try not to think too much about Friday. Right now I am just in logistics for Friday: what to pack, what time to leave, what all can I do while we are up there, where are the girls going. I am on edge because I know Friday can bring about some things I never thought I would have to face as a mother. I mean really, the fact that I am taking my child to a neurologist is enough of a shock to my system. I still am not ready for anything past that. We are also trying to reschedule an eye appointment in while we are there, nothing is ever simple it seems.
I know those of you in my life have had to listen to me waiver and falter, whine and question, and really just vent for the last year. Just know that this is a big week for me, this Friday is the biggest deal to me. When it was suggested as a specialist we should see, my heart sunk. When it was rescheduled, my mind went into a tailspin. And now it is here and I gulping big mouthfuls of air, trying to muster up what I need to face this. We have seen many of the other predicted problems for micropreemies come to fruition for Caleb, sensory, vision, motor, speech, immune. But he also beat the odds on other things. Friday seems to be the day where we square off on this one issue of brain damage, nerve damage, spasticity. ( I have seen a lot of westerns in my day, so of course it is a showdown, cue western music) Either way it doesnt change who Caleb is or what he means to me but I guess it changes who I am. I am sitting here in disbelief that my child needs all these interventions. How could God possibly think I am capable and strong enough? But in my heart I know, I am not those things, He is. I dont have to be those things. I can sit here on a Sunday night, preparing for the week and for Friday knowing that my role is a mother, a teacher and an advocate for my child. The rest I can set aside and hope and trust that God is taking care of that. I am not a healer or a miracle worker. I dont have to know why, even though I struggle with asking that question often on some days. I dont have to know why to mother Caleb or the girls. I just have to know who, who am I, what is my role, who am I mothering and how can I do that correctly, and who do I need to trust for the rest. I think right now I am still at the how stage though or the why. How did this happen, why us? I am really trying to focus on just being a mother I dont have to label it any more than that tonight. Not mom of many, experienced mom, tired mom, special needs mom, just mommy.
Gulp, it's a big week. It's a busy week and that will help. Recognizing and admitting that this appointment matters, that this journey we have been on does have it's own set of milemarkers and signifcant stops along the way. I am hoping for grace and compassion from our doctor team. I am hoping for wisdom and understanding from all involved in caring for Caleb. I am hoping I can mother him and allow God to work through the rest for me. It isnt an easy place to be but it's the place I am at.
We have waited so long for this appointment, It's been recommended, postponed, rescheduled, and now it is almost here. It seem unreal because it seems so long in the making. From the first time I saw Caleb when the doctors pointed to his tiny head and said this is where his brain bleed is and we waited and prayed. To a few weeks later when they said his ultrasound showed some unusual things and we may be looking at brain surgery, what? It was my biggest fear after the fear of his death of course, the fear that he would have life long major handicaps. And we have been up and down this rollercoaster ride with him, from one opinion to another. But we have been waiting for the year one neuro appointment and it is finally here. What? It is finally here, you mean I may have answers on Friday? Realistically, we already have some of those answers, other answers seem possible but unlikely, others only time will tell. We have seen so many other specialists in the last year I am not sure why I have placed so much emphasis on this one appointment. I have a huge packet to fill out this week. I have had the packet since February, last minute Chris, yep that's me. His birth history is all fuzzy to me, I was waiting on his medical records for some of the questions. Other questions, we just didnt know the answer to yet, he wasnt developmentally there yet. And mostly, I have answered enough questions in the last year, I wanted to table this until I had to deal with it. Now I have to deal with it. Stupid paperwork.
I am on edge tonight, the kids are asleep, the house is quiet, and I am trying to plan out this busy week, and try not to think too much about Friday. Right now I am just in logistics for Friday: what to pack, what time to leave, what all can I do while we are up there, where are the girls going. I am on edge because I know Friday can bring about some things I never thought I would have to face as a mother. I mean really, the fact that I am taking my child to a neurologist is enough of a shock to my system. I still am not ready for anything past that. We are also trying to reschedule an eye appointment in while we are there, nothing is ever simple it seems.
I know those of you in my life have had to listen to me waiver and falter, whine and question, and really just vent for the last year. Just know that this is a big week for me, this Friday is the biggest deal to me. When it was suggested as a specialist we should see, my heart sunk. When it was rescheduled, my mind went into a tailspin. And now it is here and I gulping big mouthfuls of air, trying to muster up what I need to face this. We have seen many of the other predicted problems for micropreemies come to fruition for Caleb, sensory, vision, motor, speech, immune. But he also beat the odds on other things. Friday seems to be the day where we square off on this one issue of brain damage, nerve damage, spasticity. ( I have seen a lot of westerns in my day, so of course it is a showdown, cue western music) Either way it doesnt change who Caleb is or what he means to me but I guess it changes who I am. I am sitting here in disbelief that my child needs all these interventions. How could God possibly think I am capable and strong enough? But in my heart I know, I am not those things, He is. I dont have to be those things. I can sit here on a Sunday night, preparing for the week and for Friday knowing that my role is a mother, a teacher and an advocate for my child. The rest I can set aside and hope and trust that God is taking care of that. I am not a healer or a miracle worker. I dont have to know why, even though I struggle with asking that question often on some days. I dont have to know why to mother Caleb or the girls. I just have to know who, who am I, what is my role, who am I mothering and how can I do that correctly, and who do I need to trust for the rest. I think right now I am still at the how stage though or the why. How did this happen, why us? I am really trying to focus on just being a mother I dont have to label it any more than that tonight. Not mom of many, experienced mom, tired mom, special needs mom, just mommy.
Gulp, it's a big week. It's a busy week and that will help. Recognizing and admitting that this appointment matters, that this journey we have been on does have it's own set of milemarkers and signifcant stops along the way. I am hoping for grace and compassion from our doctor team. I am hoping for wisdom and understanding from all involved in caring for Caleb. I am hoping I can mother him and allow God to work through the rest for me. It isnt an easy place to be but it's the place I am at.
Tuesday, November 24, 2009
I am changing things up this Thanksgiving
It's almost Thanksgiving which has always been my favorite holiday. I love all the food, family being together, and football on the tv. When I was a child, we always went to my grandparents for dinner. Their small house was crowded with family, cousins, aunts and uncles, siblings, and hunters. My cousins and uncles and their friends would hunt on my grandparents property. Inevivatbly, a deer was hanging from a tree every time we drove up the driveway. I hated that part but Marlena and I always enjoyed some of my cousins' and uncles' friends. They were loud, fun and often cute. Too funny that I remember that now.
I remember mostly my grandma bustling around her kitchen, making so many things and serving everyone else. I miss her so much. I remember my grandpa watching the parade, calling grandma in to to look at something, as if she wasnt busy at all. I remember sharing the chocolate pie with him, fighting over who received the bigger piece. My dad was always off for Thanksgiving, the post office was closed. It was a day we knew we would get to spend with him. My brothers were always glued to the tv, watching football, some things never change. The house would get so crowded and hot, we would go out and sit on the porch swings and talk, sometimes even when it was snowing.
By high school, Crave was even attending our Thanksgiving. Once as a hunting guest of my cousin, and then later years as my guest. My grandma welcomed him right in, just like she did everyone. In college, Jason even brought a friend of his home to hunt and spend the holiday with us. That was there year I may have deceived him into thinking I was a better cook than I truly am. I remember my grandma fussing over the men and insisting my sister and I do it as well. She and mom would encourage me to make Crave a plate, get him dessert, bring him coffee. I would always chafe and inform them Ja was capable of taking care of himself. My mom still fusses over Crave, and the feminist and realist in me still chafes. Because really Crave lived on his own before me, he is capable of making his own dinner and washing his own dish. My grandmother and my mother possess a giving and humble spirit. My mom and grandma knew how to serve with love, to demonstrate love in practical and tangible ways. I struggle, I have a hard time putting others needs above my own needs or pride, especially a man's needs! I encourage my girls to think for themselves, be themselves, learn how to do things for themselves. There is value in self-sufficiency and respect for oneself. I guess this Thanksgiving I am reflective of the lessons I learned from my grandmother and my own mother, lessons I tend to fail at putting into practice.
This year I am responsible for making the chocolate pie and sadly there is no one to share it with. My grandfather died when Seneca was a baby, my little brother isnt coming home for Thanksgiving. I will have a whole pie to myself and I do feel sadness over that. I am making the mashed potatoes, which I know how to make and make often for my own family. But all of my Thanksgiving memories involve images of my grandma making potatoes. I could never measure up to who she was a cook or as a woman.
I hope as Mar and I are shuffling and rushing around the kitchen making preparations we get the chance to remember the dinners of the past. There are days when my heart cannot believe my grandma is no longer with us. I miss her so much, my girls miss her so much. Crave misses her so much. She so lovingly cared for each of us and made each of us feel valued and special to her. She did that by serving us and caring for us. To me this year, this holiday that principle is more important than any feministic or self-serving principle I have. I say that knowing full well my brothers and my husband and brother-in-law would knowningly and willingly take advantage of my change of heart. I can see them all day requesting more tea, another plate, more dessert and chiding me if I rebel and grouch. Luckily, none of them read my blog and so they wont know about my change of my heart, my new charge for this week: to show my girls and myself that our actions and attitudes make such a difference to others ability to feel loved and valued. I am very good at using words to affirm. I am warm and affectionate. I struggle with humbling myself and putting others needs above my own. So this Thanksgiving I am thankful for Thanksgivings of the past, of family gatherings and wonderful food and of lessons learned that are lifelong. I will make yummy, smooth mashed potatoes and I will work to show others I love their value to me in practial and tangible ways. I will say, "Yes, Crave, I would love to get you a slice of pie," and mean it. I will not say, "You have legs, get it yourself," to anyone this year.
Happy Thanksgiving!!
I remember mostly my grandma bustling around her kitchen, making so many things and serving everyone else. I miss her so much. I remember my grandpa watching the parade, calling grandma in to to look at something, as if she wasnt busy at all. I remember sharing the chocolate pie with him, fighting over who received the bigger piece. My dad was always off for Thanksgiving, the post office was closed. It was a day we knew we would get to spend with him. My brothers were always glued to the tv, watching football, some things never change. The house would get so crowded and hot, we would go out and sit on the porch swings and talk, sometimes even when it was snowing.
By high school, Crave was even attending our Thanksgiving. Once as a hunting guest of my cousin, and then later years as my guest. My grandma welcomed him right in, just like she did everyone. In college, Jason even brought a friend of his home to hunt and spend the holiday with us. That was there year I may have deceived him into thinking I was a better cook than I truly am. I remember my grandma fussing over the men and insisting my sister and I do it as well. She and mom would encourage me to make Crave a plate, get him dessert, bring him coffee. I would always chafe and inform them Ja was capable of taking care of himself. My mom still fusses over Crave, and the feminist and realist in me still chafes. Because really Crave lived on his own before me, he is capable of making his own dinner and washing his own dish. My grandmother and my mother possess a giving and humble spirit. My mom and grandma knew how to serve with love, to demonstrate love in practical and tangible ways. I struggle, I have a hard time putting others needs above my own needs or pride, especially a man's needs! I encourage my girls to think for themselves, be themselves, learn how to do things for themselves. There is value in self-sufficiency and respect for oneself. I guess this Thanksgiving I am reflective of the lessons I learned from my grandmother and my own mother, lessons I tend to fail at putting into practice.
This year I am responsible for making the chocolate pie and sadly there is no one to share it with. My grandfather died when Seneca was a baby, my little brother isnt coming home for Thanksgiving. I will have a whole pie to myself and I do feel sadness over that. I am making the mashed potatoes, which I know how to make and make often for my own family. But all of my Thanksgiving memories involve images of my grandma making potatoes. I could never measure up to who she was a cook or as a woman.
I hope as Mar and I are shuffling and rushing around the kitchen making preparations we get the chance to remember the dinners of the past. There are days when my heart cannot believe my grandma is no longer with us. I miss her so much, my girls miss her so much. Crave misses her so much. She so lovingly cared for each of us and made each of us feel valued and special to her. She did that by serving us and caring for us. To me this year, this holiday that principle is more important than any feministic or self-serving principle I have. I say that knowing full well my brothers and my husband and brother-in-law would knowningly and willingly take advantage of my change of heart. I can see them all day requesting more tea, another plate, more dessert and chiding me if I rebel and grouch. Luckily, none of them read my blog and so they wont know about my change of my heart, my new charge for this week: to show my girls and myself that our actions and attitudes make such a difference to others ability to feel loved and valued. I am very good at using words to affirm. I am warm and affectionate. I struggle with humbling myself and putting others needs above my own. So this Thanksgiving I am thankful for Thanksgivings of the past, of family gatherings and wonderful food and of lessons learned that are lifelong. I will make yummy, smooth mashed potatoes and I will work to show others I love their value to me in practial and tangible ways. I will say, "Yes, Crave, I would love to get you a slice of pie," and mean it. I will not say, "You have legs, get it yourself," to anyone this year.
Happy Thanksgiving!!
Sunday, November 22, 2009
monday is here
It's officially Monday. I have made no deciscions about Little Man's treatment plan. Stike that, I have decided to wait to make a decision after the holidays. Indecision and waiting are not action words but they are the actions I am taking right now. I feel at peace about waiting to start in the new year. The suggested plan was time consuming, highly structured and not manageable right now. I spent the week evaluating our schedule and our family dynamic. I also spent time in prayer and in quiet, not trying to force a decision.
I carried a notebook around all week, documenting our time commitments, priorities, and family and individual routines. I also kept notes, per therapist instructions, on Caleb's 'quirks,fears, irregularites' Basically spent the week documenting what was abnormal about my son's behavior, movement, mannerisms. I cried more this weekend than I have in a long time. Behaviors and quirks I wandered about before make more sense when viewed through fresh eyes. When you know what to look for, it is easier to see.
Ja and I had late night conversations, it was easier to talk in the dark about our fears and sadness. Caleb was a more agiated baby this weekend as well. I think in reality, Ja and I were more attuned to his comfort level and his reactions to stimuli. Before when he fussed, we would attribute it to hunger or the need for a nap or attention. This weekend we were on the look for triggers and responses. The list of these is longer than I realized and this troubles me.
When we started OT therapy, I just wanted help for his feeding issues. I wanted him to be able to eat table food without fear and gagging. I did not think it went much deeper than that and I honestly believed it would be a quick fix. A couple months, at most, of working to build up his comfort and skill level, I thought we would quickly relieve his feeding issues. Now the reality of a more complex and life long issue is settling over me and it feels very heavy.
We were given the clues to look for when Caleb feels threatened or stressed, when his nervous system is on overload. I saw those clues come into play when Jason or I would try to cuddle him and my heart sunk. I have realized this week that we have to meet his needs on his terms. I so long to sit and rock him all night, to hold him close to me and feel him mold into me, into my body. Unfortunately, his body cannot process that right now and so my feelings must not be prioritized over his needs. It is hard place for me to be in as a mother.
Other things seemed to line up, to make sense this week as we looked for clues and behaviors. His constant mouthing of toys, his constant motion; all ways to provide a soothing sensory experience for him. We have some suggested therapy options and we are hopeful they will work, that they will lessen his defensive responses. They require being intentional in every aspect of his care. We have been intentional so much already in his life, intentional for his gross and fine motor skill development and for lessening his spasticity. I had hoped we are almost done being intentional and could just be. It is hard to carry extra guidelines and emphasis in the back of your mind. To use forethought in every activity from feeding to diapering and bathing to play and social time Pick him up this way, hold him that way, talk to him this way, move him that way. Aghh. It became exhausting. Activites and moments that were natural to me as an experienced mom now required new thought processes and adaptability.
I made a list this week of things about my son that were abnormal. How very disheartening. heartbreaking, traiterish. Yes, I feel like a traitor in some ways. Because I love this little boy, quirks and all. I love him as he is now. with all of my heart. I have to remind myself that identifying and admitting is the first step in helping him overcome this "issue"
I struggle so much with not wanting his prematurity to define him. He is 15 months old now. And this is our next step, continuing his therapies, working to identify and move past his fears, one sensory issue at a time. The first one being his fear of eating, chewing, swallowing. That takes precedint over cuddling issues. I know this because I know Caleb still has the ability to show and express love and to soak up love and affection. One can clearly see that reality any time he is with his sisters or us. My hope is that one day soon, I will get to just hold my son and be. Be his mommy. His comfort.
(I know that I have not shared Caleb's new diagnosis with everyone and so some of you may wonder what I am talking about. I really dont want to go into it, to label him any more than he already has been labeled. Or spend time discussing his treatment plan and the options we have and are considering. The easy explanation is that Caleb, being a micropreemie, was never able to fully develop his nervous system and we are seeing the ramifications of that now. My belief is that therapy is beneficial and God is bigger than any diagnosis we have received or will receive.)
And so we work and we wait. And one day we will get to just be.
I carried a notebook around all week, documenting our time commitments, priorities, and family and individual routines. I also kept notes, per therapist instructions, on Caleb's 'quirks,fears, irregularites' Basically spent the week documenting what was abnormal about my son's behavior, movement, mannerisms. I cried more this weekend than I have in a long time. Behaviors and quirks I wandered about before make more sense when viewed through fresh eyes. When you know what to look for, it is easier to see.
Ja and I had late night conversations, it was easier to talk in the dark about our fears and sadness. Caleb was a more agiated baby this weekend as well. I think in reality, Ja and I were more attuned to his comfort level and his reactions to stimuli. Before when he fussed, we would attribute it to hunger or the need for a nap or attention. This weekend we were on the look for triggers and responses. The list of these is longer than I realized and this troubles me.
When we started OT therapy, I just wanted help for his feeding issues. I wanted him to be able to eat table food without fear and gagging. I did not think it went much deeper than that and I honestly believed it would be a quick fix. A couple months, at most, of working to build up his comfort and skill level, I thought we would quickly relieve his feeding issues. Now the reality of a more complex and life long issue is settling over me and it feels very heavy.
We were given the clues to look for when Caleb feels threatened or stressed, when his nervous system is on overload. I saw those clues come into play when Jason or I would try to cuddle him and my heart sunk. I have realized this week that we have to meet his needs on his terms. I so long to sit and rock him all night, to hold him close to me and feel him mold into me, into my body. Unfortunately, his body cannot process that right now and so my feelings must not be prioritized over his needs. It is hard place for me to be in as a mother.
Other things seemed to line up, to make sense this week as we looked for clues and behaviors. His constant mouthing of toys, his constant motion; all ways to provide a soothing sensory experience for him. We have some suggested therapy options and we are hopeful they will work, that they will lessen his defensive responses. They require being intentional in every aspect of his care. We have been intentional so much already in his life, intentional for his gross and fine motor skill development and for lessening his spasticity. I had hoped we are almost done being intentional and could just be. It is hard to carry extra guidelines and emphasis in the back of your mind. To use forethought in every activity from feeding to diapering and bathing to play and social time Pick him up this way, hold him that way, talk to him this way, move him that way. Aghh. It became exhausting. Activites and moments that were natural to me as an experienced mom now required new thought processes and adaptability.
I made a list this week of things about my son that were abnormal. How very disheartening. heartbreaking, traiterish. Yes, I feel like a traitor in some ways. Because I love this little boy, quirks and all. I love him as he is now. with all of my heart. I have to remind myself that identifying and admitting is the first step in helping him overcome this "issue"
I struggle so much with not wanting his prematurity to define him. He is 15 months old now. And this is our next step, continuing his therapies, working to identify and move past his fears, one sensory issue at a time. The first one being his fear of eating, chewing, swallowing. That takes precedint over cuddling issues. I know this because I know Caleb still has the ability to show and express love and to soak up love and affection. One can clearly see that reality any time he is with his sisters or us. My hope is that one day soon, I will get to just hold my son and be. Be his mommy. His comfort.
(I know that I have not shared Caleb's new diagnosis with everyone and so some of you may wonder what I am talking about. I really dont want to go into it, to label him any more than he already has been labeled. Or spend time discussing his treatment plan and the options we have and are considering. The easy explanation is that Caleb, being a micropreemie, was never able to fully develop his nervous system and we are seeing the ramifications of that now. My belief is that therapy is beneficial and God is bigger than any diagnosis we have received or will receive.)
And so we work and we wait. And one day we will get to just be.
Wednesday, November 18, 2009
Being quiet, at least for a day or two
Feeling overwhelmed and pressured today. The internet is a wonderful tool, and I admit, I am somewhat addicted to it. Email, facebook, blogging, netflix, google: all part of my day now. I love how I can communicate with my brothers who do not live close, my sister and I can email back and forth throughout the day. I can find old friends and stay in contact with long ago friends and new friends. I blog my thoughts and can share so much more effectively where I am at emotionally and spiritually. I love the perspective I get when I can type out my feelings and organize them. I love how I can watch foreign movies and brittish miniseries on Netflix on the nights I can't sleep. I can print off coloring pages for the girls and help them learn facts about the things that interest them. I love the internet!
The last few days I have used the internet to research and examine a diagnosis and treatment plan for Caleb. I am finding it overwhelming, so much information, so many different opionions. Will we choose the right course of action, and in the right time frame? I want the best for my kids and I want to do all that I can to help. But I am feeling the need to evaluate and set boundaries, almost like setting the search parameters on a google search. I have too much input right now, too much information, too much expectation and anticipation of a decision. And so I have decided to just rest today. Not rest physically because my house is a mess! But rest in my research, rest in my conversations about it.
I am not being like an ostrich and burrying my head in the sand. I am choosing to sit still and trust in the promise of God. Some days I just desire to be still and know.
We are to come next Monday with our list of questions and concerns to discuss with our therapy team. Also coming with our evaluation of our family life and schedule. Today I feel as though I cannot fit one more thing in my life but I know my schedule and my priorites can be rearranged and shuffled.
I have always been one to say, "Trust the process. There is growth and a wealth of insight and meaning in the process." By process, I think I have always meant the treatment plan we are on, the step A to step B and C schedule of medical interventions we have been on. My advice to new NICU moms is that, Trust in the Process. Allow them to work out the breathing and heart issues before moving on to feeding and growth, etc. And we have done that, now we are on to the part of the process we were only forewarned about in the NICU. It seemed so far in the future and not at all plausible when we were in the NICU, and so my mind did not dwell on the future, expected and predicted issues. In truth, much information was not alloted by the doctors just an allusion to future issues: learning delays, motor delays, nervous system comprimise, feeding issues. They seemed so much smaller than the major health issues. Well now we are in those expected issues and I can say they no longer seem smaller or less intense!
For now I am taking time off of the trust the process sentiment. Not that I do not trust, I am just chosing to rest, to be quiet and still. I know there is help out there for us. I know his therapies are working. I am not sure what our next step is. I have decided the only voice I want to hear from right now is God's spirit. I value and trust the other voices in my life, family, medical professionals, experienced parents, but for now I am overwhelmed and need God's direction and his peace.
"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love." (Zephenia 3:17)
The last few days I have used the internet to research and examine a diagnosis and treatment plan for Caleb. I am finding it overwhelming, so much information, so many different opionions. Will we choose the right course of action, and in the right time frame? I want the best for my kids and I want to do all that I can to help. But I am feeling the need to evaluate and set boundaries, almost like setting the search parameters on a google search. I have too much input right now, too much information, too much expectation and anticipation of a decision. And so I have decided to just rest today. Not rest physically because my house is a mess! But rest in my research, rest in my conversations about it.
I am not being like an ostrich and burrying my head in the sand. I am choosing to sit still and trust in the promise of God. Some days I just desire to be still and know.
We are to come next Monday with our list of questions and concerns to discuss with our therapy team. Also coming with our evaluation of our family life and schedule. Today I feel as though I cannot fit one more thing in my life but I know my schedule and my priorites can be rearranged and shuffled.
I have always been one to say, "Trust the process. There is growth and a wealth of insight and meaning in the process." By process, I think I have always meant the treatment plan we are on, the step A to step B and C schedule of medical interventions we have been on. My advice to new NICU moms is that, Trust in the Process. Allow them to work out the breathing and heart issues before moving on to feeding and growth, etc. And we have done that, now we are on to the part of the process we were only forewarned about in the NICU. It seemed so far in the future and not at all plausible when we were in the NICU, and so my mind did not dwell on the future, expected and predicted issues. In truth, much information was not alloted by the doctors just an allusion to future issues: learning delays, motor delays, nervous system comprimise, feeding issues. They seemed so much smaller than the major health issues. Well now we are in those expected issues and I can say they no longer seem smaller or less intense!
For now I am taking time off of the trust the process sentiment. Not that I do not trust, I am just chosing to rest, to be quiet and still. I know there is help out there for us. I know his therapies are working. I am not sure what our next step is. I have decided the only voice I want to hear from right now is God's spirit. I value and trust the other voices in my life, family, medical professionals, experienced parents, but for now I am overwhelmed and need God's direction and his peace.
"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love." (Zephenia 3:17)
Monday, November 16, 2009
coffee=clarity?
I feel like I have about three or four different blog posts running through my head tonight. Probably because I had coffee tonight and I dont usally drink coffee because of it's hyperactive effect on me. The more plausible and true reason would be that I have had an emotional weekend with different events, conversations, and happenings and I am trying to compartmentalize and organize all of them.
I had a lovely time tonight, coffee with girlfriends, and chocolate donuts, and conversations and a total of 3 Chris's. Apparantly in the 70's, Christina and variations of Christina were popular name choices for a little girl. Here in my town, in my circle of friends, I know of at least 8 Chris's. This makes me smile and giggle. But I digress from my original train of blogging thoughts. My mind is scattered and I am feeling the need to filter for my own sanity, one issue at a time is all I can handle. Yet, I am balancing or trying to process at least four seperate issues.
What is it about women, about moms, that when we get together we discuss birth stories, labor stories? Tonight during coffee we did, we discussed birth stories. Not horror or scary stories but entertaining and informative and beautiful stories. It was nice because no one was comparing or contrasting or stating that her birth was better or more affirming. There wasn't a debate over natural versus epidural or casearan, which for me was very refreshing. I have been in those discussions before and they can make birth, something so beautiful, turn into an ugly heated accusatory topic.
The topic of birth and others' stories caught me off guard tonight, I am finding more and more things are catching me offguard lateley! It was my first face to face discussion with other women about birth, after my grueling and traumatic birth of Caleb. The discussion also occuring soon after a viewing of "Birth in America," a new documentary of one couple's birth journey. I watched the movie at a screening on Friday night and acutally left midway through with tears in my eyes and almost in a state of panic. I could not finish the movie, I left briskly walking for my car with such a need to escape. Nothing against the movie, my heart and state of mind just too freshly wounded from my own painful birth event. While watching the movie I was confronted with my own feeling and loss of control during Caleb's birth. Emotions I had buried came quickly to the surface and I was forced to face them. I faced them for all of about five mintues on my way out of the theatre and my drive home. I came home and held my baby and refused to think of anything but the feeling of him in my arms and his immediate needs of food and sleep. Once he was asleep, I had calmed my self and proceded to drive back to the theatre and assure my friends I was fine. Ha, fine, really? More like in denial and happily so.
And so guess what happened when the birth conversation came up tonight? I actually enjoyed my one friend's lighthearted and somewhat comical home birth stories. One, she can tell a great story; two, they are great stories: and three, I can acknowledge and celebrate that birth is beautiful and life is beautiful. Others began to tell their stories and it was fascinating to get to know this side of my friends; of the moments that led up to them becoming mothers. Then a part of me started thinking of my own births, I have had four. I have four incredible children. Unfortunately, my mind is stuck, stuck on the traumatic and scary birth of Caleb. I have heartwarmng and funny moments in the births of my girls but my mind and my heart only quickly visit those before everything goes back to the moments and events of Caleb's birth. And tonight I felt stuck, stuck in that feeling of vulnerabilty and fear, of violation and a total lack of control. Calling his birth jarring is an understatement, perhaps the biggest understatement of my lifetime. I had to leave the table tonight and go to the bathroom, for my own comfort. Yep, that is what happened, I became emotional and had to shelter myself, ESCAPE!
Not one of my friends tonight would mind my tears or my sadness, they are all generous and kind. My own pride and coping mechanisms would not allow me to break down, a few tears is fine but more than that is unacceptable. So I collected myself and returned to the table and was able to share a little of his birth story. I am thankful they listened with interest and kindness, more thankful than I could ever express in words on a paper. I know Caleb's birth was not all trauma, there were moments of grace. I also fully recongnize that my son is a living miracle boy, that I also am fortunate to be alive. So easlily I could have lost my son or my own life. I have shared some of the emotional trauma from our time in the NICU. I have not shared of the other logistics of Caleb's birth or the 'story' of his birth. After this weekend and tonight, I have realized that I need to share and speak of it.
For so long and for several reasons, I did not speak of the trauma of Caleb's birth. I did not want to scare others or make birth seem more scary than it needs to be. Most births are not like his, most births are not as risky or frightening. I did not want my birth to turn into a discussion of the statistics or talking points on c-sections or prematurity. I did not want to have to explain or justify my c-section. I was also dealing with guilt issues, knowing my pre-existing condition was the cause for my high risk pregnancy. The guilt is something I constantly have to check myself on, and one of the many reasons I am thankful for my faith. I was also jealous of others who had full term pregnancies and easy, breezy deliveries. I didnt want to show the green-eyed monster to others. I also was busy coping with other major issues for Caleb and so my own emotional needs were put on hold. I had other pressing traumas to struggle through, more tangible, visible issues.
In these months we have been home, I have shared in confidence with others of my trauma only to have them say I should just be thankful for Caleb. Oww, that hurts on so many levels!!!! Each day I am thankful for my beautiful son. But cliches and feel good sentiments do not erase bad memories or the deep, dark feelings and events I have been through. And so I did not speak. I did not deal, except for brief moments and then I would talk myself out of deeply feeling or recongizing my hurt.
Coping. Denial,...Keep on keeping on.
Tonight in the midst of coffee and girlfriends, I realized a few things...
Timing is everything. It is time for me to deal. And so first I want to say, I have had beautiful births. I have some funny moments in each of my births, even Caleb's. I am thankful I was able to give birth, to carry children in my womb. But, I have had hard births. I have had scary births. I have also expereienced trauma that broke my heart, shattered my peace, stole my feeling of control and privacy. I can rejoice in the gift of a son, a courageous son healed by God, while recognizing that the events of his birth caused much emotional pain. And so in the weeks ahead, I hope to take time to confront these events, to examine and think upon them. I will not dwell on the things I cannot change but I do feel the need to at least speak of them, or write of them.
I am a firm believer in being who you are. I don't want pretences. I want authenticity. I am so thankful for the others who take me as I am, who lovingly and graciously allow me to be broken. Thankful that others do not pity me or try to "fix" my brokenness. I am asking and trying to allow God to reshape my brokenness. I need not pity only grace.
I'm Chris, I am. (we also talked of Dr. Seuss tonight)
I had a lovely time tonight, coffee with girlfriends, and chocolate donuts, and conversations and a total of 3 Chris's. Apparantly in the 70's, Christina and variations of Christina were popular name choices for a little girl. Here in my town, in my circle of friends, I know of at least 8 Chris's. This makes me smile and giggle. But I digress from my original train of blogging thoughts. My mind is scattered and I am feeling the need to filter for my own sanity, one issue at a time is all I can handle. Yet, I am balancing or trying to process at least four seperate issues.
What is it about women, about moms, that when we get together we discuss birth stories, labor stories? Tonight during coffee we did, we discussed birth stories. Not horror or scary stories but entertaining and informative and beautiful stories. It was nice because no one was comparing or contrasting or stating that her birth was better or more affirming. There wasn't a debate over natural versus epidural or casearan, which for me was very refreshing. I have been in those discussions before and they can make birth, something so beautiful, turn into an ugly heated accusatory topic.
The topic of birth and others' stories caught me off guard tonight, I am finding more and more things are catching me offguard lateley! It was my first face to face discussion with other women about birth, after my grueling and traumatic birth of Caleb. The discussion also occuring soon after a viewing of "Birth in America," a new documentary of one couple's birth journey. I watched the movie at a screening on Friday night and acutally left midway through with tears in my eyes and almost in a state of panic. I could not finish the movie, I left briskly walking for my car with such a need to escape. Nothing against the movie, my heart and state of mind just too freshly wounded from my own painful birth event. While watching the movie I was confronted with my own feeling and loss of control during Caleb's birth. Emotions I had buried came quickly to the surface and I was forced to face them. I faced them for all of about five mintues on my way out of the theatre and my drive home. I came home and held my baby and refused to think of anything but the feeling of him in my arms and his immediate needs of food and sleep. Once he was asleep, I had calmed my self and proceded to drive back to the theatre and assure my friends I was fine. Ha, fine, really? More like in denial and happily so.
And so guess what happened when the birth conversation came up tonight? I actually enjoyed my one friend's lighthearted and somewhat comical home birth stories. One, she can tell a great story; two, they are great stories: and three, I can acknowledge and celebrate that birth is beautiful and life is beautiful. Others began to tell their stories and it was fascinating to get to know this side of my friends; of the moments that led up to them becoming mothers. Then a part of me started thinking of my own births, I have had four. I have four incredible children. Unfortunately, my mind is stuck, stuck on the traumatic and scary birth of Caleb. I have heartwarmng and funny moments in the births of my girls but my mind and my heart only quickly visit those before everything goes back to the moments and events of Caleb's birth. And tonight I felt stuck, stuck in that feeling of vulnerabilty and fear, of violation and a total lack of control. Calling his birth jarring is an understatement, perhaps the biggest understatement of my lifetime. I had to leave the table tonight and go to the bathroom, for my own comfort. Yep, that is what happened, I became emotional and had to shelter myself, ESCAPE!
Not one of my friends tonight would mind my tears or my sadness, they are all generous and kind. My own pride and coping mechanisms would not allow me to break down, a few tears is fine but more than that is unacceptable. So I collected myself and returned to the table and was able to share a little of his birth story. I am thankful they listened with interest and kindness, more thankful than I could ever express in words on a paper. I know Caleb's birth was not all trauma, there were moments of grace. I also fully recongnize that my son is a living miracle boy, that I also am fortunate to be alive. So easlily I could have lost my son or my own life. I have shared some of the emotional trauma from our time in the NICU. I have not shared of the other logistics of Caleb's birth or the 'story' of his birth. After this weekend and tonight, I have realized that I need to share and speak of it.
For so long and for several reasons, I did not speak of the trauma of Caleb's birth. I did not want to scare others or make birth seem more scary than it needs to be. Most births are not like his, most births are not as risky or frightening. I did not want my birth to turn into a discussion of the statistics or talking points on c-sections or prematurity. I did not want to have to explain or justify my c-section. I was also dealing with guilt issues, knowing my pre-existing condition was the cause for my high risk pregnancy. The guilt is something I constantly have to check myself on, and one of the many reasons I am thankful for my faith. I was also jealous of others who had full term pregnancies and easy, breezy deliveries. I didnt want to show the green-eyed monster to others. I also was busy coping with other major issues for Caleb and so my own emotional needs were put on hold. I had other pressing traumas to struggle through, more tangible, visible issues.
In these months we have been home, I have shared in confidence with others of my trauma only to have them say I should just be thankful for Caleb. Oww, that hurts on so many levels!!!! Each day I am thankful for my beautiful son. But cliches and feel good sentiments do not erase bad memories or the deep, dark feelings and events I have been through. And so I did not speak. I did not deal, except for brief moments and then I would talk myself out of deeply feeling or recongizing my hurt.
Coping. Denial,...Keep on keeping on.
Tonight in the midst of coffee and girlfriends, I realized a few things...
Timing is everything. It is time for me to deal. And so first I want to say, I have had beautiful births. I have some funny moments in each of my births, even Caleb's. I am thankful I was able to give birth, to carry children in my womb. But, I have had hard births. I have had scary births. I have also expereienced trauma that broke my heart, shattered my peace, stole my feeling of control and privacy. I can rejoice in the gift of a son, a courageous son healed by God, while recognizing that the events of his birth caused much emotional pain. And so in the weeks ahead, I hope to take time to confront these events, to examine and think upon them. I will not dwell on the things I cannot change but I do feel the need to at least speak of them, or write of them.
I am a firm believer in being who you are. I don't want pretences. I want authenticity. I am so thankful for the others who take me as I am, who lovingly and graciously allow me to be broken. Thankful that others do not pity me or try to "fix" my brokenness. I am asking and trying to allow God to reshape my brokenness. I need not pity only grace.
I'm Chris, I am. (we also talked of Dr. Seuss tonight)
Friday, November 13, 2009
Pizza and Envy
Two evenings ago, we went out to eat as a family. We crowded into a booth and shared a couple of yummy pizzas. Caleb remained buckled in his carseat and happily drank his bottle. It was a fun evening, we rated the pizza against our childhood favorite pizzas and laughed and played silly games. Crave and I even made googly eyes at each other across the table. When we were all paid up, we bundled up and headed out to the car to head home. As we were leaving the restuarant I just happened to glance in the window and saw a young family with a baby, around ten months if I had to guess. He was buckled in a wooden high chair. I watched as they studied their menus and he brought his hands together to clap and clap and clap. He was so animated and lively. His parents looked on, probably trying to decide which pizza to order. But something in my heart ached, almost ripped. I wanted to tap on the glass and point to there baby and have them notice and admire him. No doubt they were devoted and attentive parents, they safely buckled him in, provided toys for him, dressed him warmly for the cool weather. But my heart ached because there baby was doing something my little boy can't or won't do. Something I have been working and encouraging for months with him to do, clap his hands and have expressive, interactive play. This family took for granted this develpmental play moment, and I have been anxiously waiting and working for it with Caleb. I also admitted to myself that I took those moments for granted with my girls. So many normal and interactive activites and moments I never relished or appreciated as much as I could or should have. From first laughters and first words to reaching out for me and playing with me, moments I long for with Caleb, moments I savor so much when they do happen or when they will eventually.
Our therapy assignment for the last two weeks was to have more interactive play, to encourage him to knock things over and bang them together. His illness and the rest of the familys' illness as well has halted our play therapy. And so when I saw that little baby doing the things I so want Caleb to do it was like time stopped for a minute. I spent the rest of the drive home and the remaining evening quiet, introspective, and stewing in my own jealousy, envy and regret. Not a great place to be, noting every thing your child is NOT doing that others' babies are easily doing. Angry that everything is so much more stressfull and planned out,it is play therapy and not just play. Sad that I am not just enjoying the wonderful things he is doing now like crawling and rolling and smiling. Guilt that I am not focusing on how far we have come but instead on how far we have not come. Envious that I did not get the beautiful birth and bonding time of his newborn months and the months of his infancy have been work and worry.
I am aware more so each day that he is my last baby, that my 'baby days' are soon over. Before his birth I had worked up that expectation in my mind and heart. How fitting I thought to have a little boy as my last baby, I could enjoy all the other things of infancy that I love and also learn new things in mothering a boy. I did not know that the stages of infancy would be so different for Caleb and I. I had no idea our journey would be so different and difficult. I did not know I would learn so much more than just how to mother a boy.
With the girls I easily glided from one stage to the next, looking forward to the first smile, coo, crawl, step. With Caleb it has been so different, each milestone has not just "happened." It has required work, exercise, discipline, forethought and prayer. He has come along way from when we first brought him home. I remember vividly his first months home. His neck was so stiff, he could not turn his head. Baths were a struggle and not a joy; his neck muscles were so tight he was hard to wash. With many months of therapy and exercise, he has almost full range of motion in his neck. So therapy is working, he is progressing. I know I should just be thankful for that and remain in that mind frame. If only I weren't human, right?
I can say I do not spend every day asking "Why me?" or "Why us?" Most days I am caught up in how blessed we are to have him home, how sweet he is, how far he has come. Even though he does not cry out for "Mama", his eyes and his whole body cry out for me and light up for me. Even though he does not clap or bang or "play" like others, he still finds joy and brings joy. Will these milestones come, oh Lord I hope and pray. I cannot begrudge others for happy, healthy, normal children. I can only encourage them to look up and see how amazing their babies are, how blessed they are to enjoy the moments and milestones without all the extra work and worry. I hope I do not sound jaded, I try to keep that in check. God is good and He has blessed us so much. My sweet little boy is a living miracle baby and I do believe God continues to work in him and heal him. I did not realize I had so much more to learn as a mother!
Our therapy assignment for the last two weeks was to have more interactive play, to encourage him to knock things over and bang them together. His illness and the rest of the familys' illness as well has halted our play therapy. And so when I saw that little baby doing the things I so want Caleb to do it was like time stopped for a minute. I spent the rest of the drive home and the remaining evening quiet, introspective, and stewing in my own jealousy, envy and regret. Not a great place to be, noting every thing your child is NOT doing that others' babies are easily doing. Angry that everything is so much more stressfull and planned out,it is play therapy and not just play. Sad that I am not just enjoying the wonderful things he is doing now like crawling and rolling and smiling. Guilt that I am not focusing on how far we have come but instead on how far we have not come. Envious that I did not get the beautiful birth and bonding time of his newborn months and the months of his infancy have been work and worry.
I am aware more so each day that he is my last baby, that my 'baby days' are soon over. Before his birth I had worked up that expectation in my mind and heart. How fitting I thought to have a little boy as my last baby, I could enjoy all the other things of infancy that I love and also learn new things in mothering a boy. I did not know that the stages of infancy would be so different for Caleb and I. I had no idea our journey would be so different and difficult. I did not know I would learn so much more than just how to mother a boy.
With the girls I easily glided from one stage to the next, looking forward to the first smile, coo, crawl, step. With Caleb it has been so different, each milestone has not just "happened." It has required work, exercise, discipline, forethought and prayer. He has come along way from when we first brought him home. I remember vividly his first months home. His neck was so stiff, he could not turn his head. Baths were a struggle and not a joy; his neck muscles were so tight he was hard to wash. With many months of therapy and exercise, he has almost full range of motion in his neck. So therapy is working, he is progressing. I know I should just be thankful for that and remain in that mind frame. If only I weren't human, right?
I can say I do not spend every day asking "Why me?" or "Why us?" Most days I am caught up in how blessed we are to have him home, how sweet he is, how far he has come. Even though he does not cry out for "Mama", his eyes and his whole body cry out for me and light up for me. Even though he does not clap or bang or "play" like others, he still finds joy and brings joy. Will these milestones come, oh Lord I hope and pray. I cannot begrudge others for happy, healthy, normal children. I can only encourage them to look up and see how amazing their babies are, how blessed they are to enjoy the moments and milestones without all the extra work and worry. I hope I do not sound jaded, I try to keep that in check. God is good and He has blessed us so much. My sweet little boy is a living miracle baby and I do believe God continues to work in him and heal him. I did not realize I had so much more to learn as a mother!
Monday, November 9, 2009
bodies on the mend, hearts not so much
Bodies on the mend, hearts not so much. We spent the weekend in the hospital with a sick little baby boy. He was in isolation so his sisters had not seen or held him from Thursday evening until Sunday afternoon. Crave and I switched off on childcare but neither of us got much sleep. Little Man sick in the hospital, Panda with a bad cough at home. Crave spent one night in the hospital with Little Man so I could go home to sleep. I did not sleep, I awoke about five times, sleepily stumbling into his room to realize he wasnt there, he was at the hospital. I finally curled up in the rocker in his room and slept fiftully for a few hours.
He is home now, recovering, still tired and weak but well enough to be home. He had the sweetest smile when he saw his sisters' anxious faces. He reached out for them and his eyes just sparkled. Love and adoration, belonging, such sweet emotions.
This morning his older 2 sisters begged to stay home and be with him. They made promises to change his diapers and help me catch up on laundry and dishes. They didnt want to be seperated from him and they didnt want him to feel alone. It was so incredibly sweet but I sent them to school anyway. Panda woke late and went straight to his crib to wake him with an insistince that he was needing her in his sleep and she wanted to be there when he opened his eyes. He took a bath with her and her Barbies and he was all smiles. Panda spent the morning continually asking me to hold her and hug her. "Squeeze me tight Mommy, I missed you so much when you were in the hospital."
This weekend was rough with our kids in two different places, having physical and emotional needs that required tending. We had quite a few meltdown moments but I am thankful that my girls know they can say anything, express any fear or emotion and still be loved and affirmed. Jealousy, resentment, fear, blame, anger, loss; these emotions all abounded this weekend. Some were spoken and some were acted out. My energy was depleted and my reserve was on low but through God's grace we managed to make it through the weekend and this morning with a semblance of peace in the midst of struggle. I want my kids to know that no matter what life throws them, they have a place to fall, a place to be. Growth doesn't come from denying who you are or what you are feeling. It's hard to see your kids struggle or cry or fight with each other. I want everything to be easy and beautiful for them but it doesnt always work that way and it probably should not. This weekend we had a minor setback, a flashback of instability and worry from last fall. Senny Sunshine kept talking of seperation and disruption, funny words for an 8 year old to focus on! The girls have learned Little Man's health and immunity are more vulnerable to sickness. They learned we can try and be preventative but in the end we just have to be willing to trust that God is more in control than us. I hope we all recover quickly, physically and emotionally. I do not want the girls to live in fear for their brother's health. I also do not want them to feel insecure or have seperation anxiety. But I cannot control how they feel all I can do is respond with love and affirmation. And try to keep my heart and my energy reserve focused and balanced. I have learned so much in the last year about myself, others and life. I can say I am sick of learning lessons but they have all been so valuable, how can I not embrace them?
He is home now, recovering, still tired and weak but well enough to be home. He had the sweetest smile when he saw his sisters' anxious faces. He reached out for them and his eyes just sparkled. Love and adoration, belonging, such sweet emotions.
This morning his older 2 sisters begged to stay home and be with him. They made promises to change his diapers and help me catch up on laundry and dishes. They didnt want to be seperated from him and they didnt want him to feel alone. It was so incredibly sweet but I sent them to school anyway. Panda woke late and went straight to his crib to wake him with an insistince that he was needing her in his sleep and she wanted to be there when he opened his eyes. He took a bath with her and her Barbies and he was all smiles. Panda spent the morning continually asking me to hold her and hug her. "Squeeze me tight Mommy, I missed you so much when you were in the hospital."
This weekend was rough with our kids in two different places, having physical and emotional needs that required tending. We had quite a few meltdown moments but I am thankful that my girls know they can say anything, express any fear or emotion and still be loved and affirmed. Jealousy, resentment, fear, blame, anger, loss; these emotions all abounded this weekend. Some were spoken and some were acted out. My energy was depleted and my reserve was on low but through God's grace we managed to make it through the weekend and this morning with a semblance of peace in the midst of struggle. I want my kids to know that no matter what life throws them, they have a place to fall, a place to be. Growth doesn't come from denying who you are or what you are feeling. It's hard to see your kids struggle or cry or fight with each other. I want everything to be easy and beautiful for them but it doesnt always work that way and it probably should not. This weekend we had a minor setback, a flashback of instability and worry from last fall. Senny Sunshine kept talking of seperation and disruption, funny words for an 8 year old to focus on! The girls have learned Little Man's health and immunity are more vulnerable to sickness. They learned we can try and be preventative but in the end we just have to be willing to trust that God is more in control than us. I hope we all recover quickly, physically and emotionally. I do not want the girls to live in fear for their brother's health. I also do not want them to feel insecure or have seperation anxiety. But I cannot control how they feel all I can do is respond with love and affirmation. And try to keep my heart and my energy reserve focused and balanced. I have learned so much in the last year about myself, others and life. I can say I am sick of learning lessons but they have all been so valuable, how can I not embrace them?
Thursday, November 5, 2009
Happy Birthday CC
My oldest baby turns 11 tomorrow and I can hardly believe it. Sometimes it seems so long ago she was a little baby and other times it seems like it was just yesterday. I drove up to Columbus today for appointments for her brother and on the way up I was thinking of CC, of her first years, of how time flies, of how life has changed so much from when I first became a mom.
I remember so well the night I went into labor with her and her birth in the middle of the night. Who knew how instantly my life would change for the better, how big my heart would grow, how infinately small I would feel when presented with the gift of fresh, new, sweet life. Crave and I were newly married, I was barely 21, we lived in Columbus admist his old single college friends. Did I mention single, yep, we were the lone married ones, and then we became parents. Crave's friends were all starting their engineering careers, my friends were all still single and still in college. And Crave and I welcomed a baby girl into our fun, busy city life. I know when I first heard her cry,my world had just changed. She reshaped my heart, she gave me a new pupose, a new focus. This little tiny bald baby made me a mother, a mommy, a momma.
My life is so different now, four kids, some knowledge of the different early stages, some foundation of parenting down, and a whole group of fellow moms, moms in the trenches and my cheerleader or mentor moms, moms who have been where I am now and are encouraging me. I didnt have that when I first became a mom. I had the example and advice of my own mother but honestly I had not gained a full respect or appreciation for her as a mother yet. I wanted to do things my own way and I had not yet come to fully recognize the beauty and treasure I was given in my own mother. I look back at that young mom I was and I smile at what a beautiful gift I was given when I gave birth to CC. In so many ways she made me and reshaped me.
My baby is eleven. My sweet curly redheaded little girl is now a young girl, almost a young woman. She is such a treasure and such a light to me. My sister and I call her our conscience sometimes. CC is thoughtful and respectful, moral and modest, full of generosity and empathy. She loves to make people feel good about themselves and she can be so silly. I receive compliments on a continual basis about her from teachers and classmates' parents, friends and family and even complete strangers. People who remark on her beauty or her manners or her giving spirit or kindness and service. She has a true servant's heart and an openness for Jesus and the things of his spirit that touches and encourages me.
I have so many CC stories I could tell, stories that would make you roll on the floor laughing and stories that would make you cry sweet tears. Stories that would challenge you to examine your own character and ask am I that mature or that generous? Most of the stories I have written down to keep me going after my nest is empty. But I also try to sometimes quiet myself and allow CC to speak for herself. And believe me she could, the girl can talk to anyone, and often does. I try very dilligently to allow CC to define and describe herself. I do not want to put labels or defintions upon her. I do not want soceity or her peers to put those labels on her either. What I want is for her to examine and define her own self. One of the most important characteristic I want each of my girls to have is confidence. I value it and I strive for it for them. I want CC to have confidence in who she is as a daughter and sister. I want CC to have confidence in who she is as a person and friend. And most importantly I want her to have confidence in who she is in the eyes of Christ and to have a perspective that knows she is loved and valued by God.
CC is my first born, my beautiful girl who came and reshaped my world and my perspective and my heart. She is a capable and giving child. Her antics easily charm and disarm me. Her eagerness to do good and be kind in extraordinary ways amaze and challenge me. Her empathy and understanding for those less fortunate or hurting touch me and others deeply. She has an incredible grasp on the depth of God's love and sacrifice for her and she willingly and knowningly shares this with others; her friends, family, strangers. She has a desire to lead and organize and an uncanny abilty to make lists for everything. (a trait from her father, no doubt)
I see her poised on the brink of teendom, but even more so on the brink of becoming a young woman. It doesnt scare me because I see what a fine person she is becoming. But it does make me reflect on those sweet baby and toddler moments, those moments with just her and Crave and I. How quickly time came, how quickly time moved on. I remember so sweetly holding her in my arms so long ago and now she is nearly as tall as me. Our cuddling is definately different but still sweet. Our talks are less and less negotioations and now more dynamic conversations. I have watched her switch smoothly from only child to sibling. Tonight, I watched her lovingly hold her baby brother and cuddle him and I had to catch my breath. I remember snuggling her that way as a baby. Gasp, time moves too quickly but yet at the correct speed. I am thankful tonight for my beautiful oldest daugther and the change she brought to my life on a early Friday morning eleven years ago. She made me "Momma" and how incredble is that!
If you see her tomorrow or this weekend, wish her a happy birthday. And let her know I didnt share any of her stories, not about oreos or pudding or penguins or removing casts or fish named Henry or sleeping beauty or crushes.
I remember so well the night I went into labor with her and her birth in the middle of the night. Who knew how instantly my life would change for the better, how big my heart would grow, how infinately small I would feel when presented with the gift of fresh, new, sweet life. Crave and I were newly married, I was barely 21, we lived in Columbus admist his old single college friends. Did I mention single, yep, we were the lone married ones, and then we became parents. Crave's friends were all starting their engineering careers, my friends were all still single and still in college. And Crave and I welcomed a baby girl into our fun, busy city life. I know when I first heard her cry,my world had just changed. She reshaped my heart, she gave me a new pupose, a new focus. This little tiny bald baby made me a mother, a mommy, a momma.
My life is so different now, four kids, some knowledge of the different early stages, some foundation of parenting down, and a whole group of fellow moms, moms in the trenches and my cheerleader or mentor moms, moms who have been where I am now and are encouraging me. I didnt have that when I first became a mom. I had the example and advice of my own mother but honestly I had not gained a full respect or appreciation for her as a mother yet. I wanted to do things my own way and I had not yet come to fully recognize the beauty and treasure I was given in my own mother. I look back at that young mom I was and I smile at what a beautiful gift I was given when I gave birth to CC. In so many ways she made me and reshaped me.
My baby is eleven. My sweet curly redheaded little girl is now a young girl, almost a young woman. She is such a treasure and such a light to me. My sister and I call her our conscience sometimes. CC is thoughtful and respectful, moral and modest, full of generosity and empathy. She loves to make people feel good about themselves and she can be so silly. I receive compliments on a continual basis about her from teachers and classmates' parents, friends and family and even complete strangers. People who remark on her beauty or her manners or her giving spirit or kindness and service. She has a true servant's heart and an openness for Jesus and the things of his spirit that touches and encourages me.
I have so many CC stories I could tell, stories that would make you roll on the floor laughing and stories that would make you cry sweet tears. Stories that would challenge you to examine your own character and ask am I that mature or that generous? Most of the stories I have written down to keep me going after my nest is empty. But I also try to sometimes quiet myself and allow CC to speak for herself. And believe me she could, the girl can talk to anyone, and often does. I try very dilligently to allow CC to define and describe herself. I do not want to put labels or defintions upon her. I do not want soceity or her peers to put those labels on her either. What I want is for her to examine and define her own self. One of the most important characteristic I want each of my girls to have is confidence. I value it and I strive for it for them. I want CC to have confidence in who she is as a daughter and sister. I want CC to have confidence in who she is as a person and friend. And most importantly I want her to have confidence in who she is in the eyes of Christ and to have a perspective that knows she is loved and valued by God.
CC is my first born, my beautiful girl who came and reshaped my world and my perspective and my heart. She is a capable and giving child. Her antics easily charm and disarm me. Her eagerness to do good and be kind in extraordinary ways amaze and challenge me. Her empathy and understanding for those less fortunate or hurting touch me and others deeply. She has an incredible grasp on the depth of God's love and sacrifice for her and she willingly and knowningly shares this with others; her friends, family, strangers. She has a desire to lead and organize and an uncanny abilty to make lists for everything. (a trait from her father, no doubt)
I see her poised on the brink of teendom, but even more so on the brink of becoming a young woman. It doesnt scare me because I see what a fine person she is becoming. But it does make me reflect on those sweet baby and toddler moments, those moments with just her and Crave and I. How quickly time came, how quickly time moved on. I remember so sweetly holding her in my arms so long ago and now she is nearly as tall as me. Our cuddling is definately different but still sweet. Our talks are less and less negotioations and now more dynamic conversations. I have watched her switch smoothly from only child to sibling. Tonight, I watched her lovingly hold her baby brother and cuddle him and I had to catch my breath. I remember snuggling her that way as a baby. Gasp, time moves too quickly but yet at the correct speed. I am thankful tonight for my beautiful oldest daugther and the change she brought to my life on a early Friday morning eleven years ago. She made me "Momma" and how incredble is that!
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