Tuesday, December 29, 2009

scars

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. 

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

Wednesday, 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!

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. 

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?

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. 

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!

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. 

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. 

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.