My Nike statement

The motto for my life, JUST LET ME BE.

If I were to design a t shirt that accurately represents me, my heart, my sentiment, my "Nike" statement if you will, it would say this, "Just Let Me Be."

Not as in leave me alone or do not even think about bothering me; no, that isn't what I mean. I love people, enjoy being involved and invested in people. How can I help, what do you need, two of my favorite statements said genuinely. I've been blessed many times over by friends and strangers who have offered assistance and care and I like to pass it on.
But here I am at 33, wife, mother, daughter,sister,friend, some days wishing I could scream, just let me be. Or even say it in my, calm, mild-mannered, gently spoken voice, almost above a whisper: Let me Be! Let me be.

Let me be the girl I was. Let me be the woman I want. Let me be who I am right now. There are still remnants of the girl I was. Was as in when? Before I became a responsible adult? Before I became a mother? Before I became a mom of a special needs boy? Before I became a woman who lost her reproductive organs and skyrocketed into menopause? The girl who would try anything once, the girl who didn't look for assurances in life but embraced challenges. That girl's motto was "Bring it, I'll be ready." I'm no longer that girl although I try to embrace and incorporate her spirit in simple ways. Life taught me some hard lessons and they changed who I was.

The woman I want to be she seems almost as unattainable as the girl I was who so easily retreated, disappeared. I want to be strong and capable and giving and selfless. I want to be more, so simple in a statement, More. I want to be more than I am now. More than a wife, mother, daughter, sister, those are all roles I play, central to who I am, absolutely, yet dependent on others, on relationship dynamics.I want to be a writer, an advocate, and a capable, confident woman again. My surgery, this change in my life, robbed me of confidence and I stand on shaky ground. I want to be a woman who rises above that.

But right now I'm coping, looking in a mirror trying to find the best reflection of myself. The reality is that I am just staring back at myself and I need to accept who I see, not look for better lighting, or a different angle. I am a woman in the midst of a change I did not want, did not expect but cannot alter. Many days I do my best to just manage all the roles in my life. I don't take time for me and I think it is part of why I don't recognize myself now. Also part of why I feel the need to scream my new motto. For me in some ways change came over night, the birth of a son with health issues, the almost instant onset of menopause after a surgery, instantaneous and shocking alterations in my life. But in other ways, change is gradual, almost sneaking up on you. I became busy with life, with fulfilling the responsibilities of my life, and now my life is full of pressure, expectation and busyness.

I am attempting to come out of the retreat mode I entered into months ago. It seems riddled with setbacks and traps of my own making. I no longer offer the challenge of "Bring it" to the universe. Right now more than anything I just want to be. Be what? Just let me be who I am and not who you need or want me to be. Be whatever I need to be and I can tell you it probably isn't strong or capable.

I didnt bend

I sat in church this morning with the realization that my heart is broken. I willed myself to face it, to even begin to approach it. I waited for the wall to come down. But it hasn't yet and so I venture further into facing it.

Lately, I have been sharing more with friends, close, dear friends, about the state of my life, of the different things going on, of where I am in the middle of my circumstances. Several friends, sweet Christian friends have gathered around me, offered prayer, a listening ear, and encouragement. Several in offering up prayers to God on my behalf, have broken down, have shed tears, have even openly wept. I have stood almost stoically, touched by their love, grateful for a loving God, but distant. I feel broken in a way I cant describe. Distant, unwilling to yield more of myself.
I sat at the middle school on Friday in the car pool line, the new bane of my existence, the waiting in traffic for my child. But I sat there staring out the window as Caleb fussed in his car seat and the traffic never seemed to move forward; we were stuck in time, stuck in traffic. I watched the pine tree branches, full and lush blow in the strong wind. They were able to bend, to go with the flow, never breaking, just going up and down and all around. And then the rain started, softly at first but then pounding. Others closed their windows, I opened mine fully and let the smell of the rain and the approaching storm into my senses. I watched those branches and I thought, I didn't bend, I broke.
I didn't bend. I broke. I broke all around, fully, completely. I couldnt keep my self together, my life together, it fell apart, all around me, piece by piece. At first I tried to actively hold my life together, tightly I clung to faith, to hope, to people. But over time as more and more became damaged or changed I gave up fighting and looked for shelter. Finding none within easy reach, I built my own, but not on steady ground. My dreams, my relationships, my faith, my body, my hope; I know longer clung tightly, I willingly ungrasped my fingers and let them fly away in the storm.
I never felt the full force of the storm on Friday, just a refreshing rain and strong wind. But it helped me focus in on the landscape of my life and I cant seem to catch my breath now. I feel broken. I see dreams I thought would see me through life fall apart before my eyes. I see realtionships I thought would carry me and shelter me revealed in new, stark, honest light. I am wary. I am surprised at how far I allowed the world, my self, despair and anger to carry me.
I believe in a Loving God, a forgiving God, A saviour full of Grace. and I wait for my walls to break.

A walk in the woods

Today, I am cleaning madly, scrubbing floors and bathrooms, attempting to focus my mind on mundane but attainable tasks. Cleaning is not my favorite distraction, in fact it is a last resort for me. The cleaning part of being a stay at home mom, I suck at it. My heart is heavy today, my mood fowl, my faith changing, challenging me. Cleaning has helped me through the morning but I realize I need to process not avoid and so I write.
My girls are at summer church camp, they will be home late tomorrow. Caleb is still sleeping, rather exhausted from his long day yesterday. I'm feeling pressure today, pressure to hold my own, to not fall apart, to not struggle, to remain on top of things, hopeful, present, faithfilled and nonquestioning. But I have decided to let myself be, to let myself feel, to not deny or try to hide. I'm angry, frustrated, tired, melancholy, feeling the loss of so many things.
Caleb saw new doctors yesterday and also had some testing. He will be 2 in just a few weeks. In preemieland, this is advertised as the magic number. Most preemies are able to catch up developmentally by age 2. At two, you either graduate out of the program of NICU or transfer to a developmental peditatrician if you are not developmentally age appropriate. Apparantly for us, 2 is not the magic number. Age is relative, I'm in my thirties I know this. Development and personality are relative. Apparantly there is concern when a child significantly lags in several areas of development. We had lovely doctors yesterday even though we were in a tiny exam room for over 3 hours, Caleb and I. He, clothed only in a diaper, because any minute the doctor would be in to examine him. My sweet little boy, in just a diaper, toddling all over a tiny room with tile floors and metal cabinents and no toys,continually unfastening and refastening his diaper. I kept him entertained looking out the window at the parking garage searching for trucks like Pap's. But it was a very long,anticipatory three hours. Any minute we would meet our new doctor who would hold the keys to what the future looks like for my former preemie. She would be able to tell us why he isnt catching up, what this realistically means for his future, what we could do to help him. We were also having a follow up with our neurologist, a visit I perceived to be a quick, congratulatory, "Your son doesnt have brain damage" moment. One should never go into medical appointments with presumptions. I should know this by now, I have been on the NICU rollercoaster ride for two years. We talked again about life long disability, learning delays, neurological concerns. The magic number of age two did not hold the magic I believed it would, there was no moment of escaping his prematurity. Rather, we had a moment of fully recongnizing his prematurity would still continue to cause issues for him, most likely long into the future.
I came home exhuasted, from trying to entertain him, from information overload, from added therapy and homework assingments, from a little boy who screamed most of the way home, from rush hour traffic and from the internal battle of what I should feel as compared to what I do feel.
I should remain in hope, in promise, in faith, in gratitude. Can I do that while I also feel so aware, so very aware, of loss, of struggle, of injustice, of guilt? My faith seems to have changed from believing he will be completely healed to believing I will be equipped to be what I need to be his mother.
I'm struggling to adjust to menopause at 33. My mind and heart have been wrapped in that, in all that I've been hit with unexpectadly in that sphere of my life. Sometimes it feel as though it is too much to balance, I dont want to juggle a bunch of balls. Really, I would rather put the balls on the shelf and take a nap, a summer siesta. There's pressure to stay strong for my girls, for my husband, for others and then there is my cry to breathe, to be held, to be allowed to be who I am now,not who I was two years ago. Let me be, please just let me be. Let me be sad. Let me be angry. Let me be lost. I'll find my way back. I just need a moment.
It's like a great hike in the mountains, when you just want to sit for a minute and catch your breathe on a fallen log. I dont need you to carry me out of the woods. I dont need you to give me a map of the best way out of the woods, your way out of the woods. Just let me be, let me sit, let me feel the aches of my body, let me look at the mountain looming ahead and let me figure out the best way out for me. You can wait with me, sit with me, as long as you sit quietly and recongnize this is my walk, my woods, my journey.

I feel as though I have had a padlock on my thoughts lately, on my emotions. It's been five months since my hysterectomy and tonight that word seems to taunt me, bully me. My 33rd birthday is next month. I will celebrate it with my twin. I will be the one without a womb, with raging hormones and crashing moods, with short term memory loss that sometimes terrifies in it's suddenness and intensity. She will be coming into this birthday with her own loss, her own heartache but that's hers to share. My emotions seem to be on display tonight, no longer willing to be hidden or dismissed.
Friday morning my Vanny had a play date with a sweet little friend from church. I had been to the little girl's house several times as her mother and I are friends. I drove Vanny there that morning, waited until she was settled in and playing nicely and then headed out on errands. On my return trip to pick her up, I became so disoriented and turned around. I could not find her house or even remember what street it was on. I, who pride myself on calm in crisis, became panicked and also began to beat myself up rather harshly. This new sense of disorientation,forgetfulness, mental fog; it's not me. Well, it wasn't me, five months ago. I was finally able to find Vanny at her friend's house, after a major freak out. If I had taken a breath and calmly, rationally thought about it I would have figured out that a panic was unnecessary. I could have returned home and looked up her address in my email, or called a mutual friend to find her. I see that now, I realized this fact hours after the play date actually. But in those moments of confusion, I was distraught and self-loathing and angry. Angry that my body's lack of hormone regulation is such a pain in the butt to me. Eloquent, I know.

I no longer have periods. I have mood swings, hot flashes, cold sweats, periods of emotionality that are atypical for even me. I was discussing birth control with one friend today, discussing fertility with another. And I think tonight, once the house was quiet for the night, my mind began to race with these words that no longer apply to me, fertility, periods, pregnancy, hormone cycles. Sigh, sometimes you just have to stop avoiding reality and work through it.

I feel like I whine in my postings and so tonight I will end this on a grateful note. I do not regret my surgery. I feel so much better physically now. Today I went for a run. Before surgery that action was incredibly uncomfortable. Once my hormones get all worked out, without hormone therapy, I will feel even better. The loss is not something I think I will get over but I do think in time I will be able to adjust.

woods

Feeling melancholy today. Wanting a break from my day to day life right now. I want to pack all the kids up in my super cool minivan and head to the woods, a state park, somewhere outside. Somewhere I can feel the coolness of the shade trees, the smell of damp moss-covered earth, the sound of stillness or wind rushing through leaves, and just stand where I can be encompassed by something bigger than me, than my life, than my problems. The forest and the mountains are calling out to me today. They seem to promise peace, tranquility, fun, restoration, balance, escape. All things my soul is longing for right now.

Instead I will pack my diaper bag, shuttle the girls to a sitter and take Caleb to his fourth therapy appointment this week. Later today, after therapy, maybe a quick hike on the Tiger trail. Maybe that's all I need, just a few moments in the woods.

New Hope

I haven't taken the time to update about our week. Caleb had his MRI on Tuesday in Columbus. It was a nightmare day for us. His test was not scheduled until late in the day and so he could not eat or drink past 6 am. He was hungry and tired and cranky and threw probably the biggest fits of his life, in the car on the way up, in the reception area of the MRI, and later while the nurse was examining him. We watched a video on the test, went over his history, signed the consent forms and then waited. They score every patient before the test and Caleb scored a four which requires an ENT consult and stand by during the test; if you score a five, they do not do the test.
I should mention that Jason and I were very anxious going into this test. Caleb has had procedures before but this one was probably the most nerve wracking. We were both remembering the moments after his last surgery when they brought him back to us and he went apnic and had to be bagged. He didn't do well with anesthesia that day and so we were nervous about this time.
Our nurses were wonderful and understanding to our screaming, fighting mad little boy. We had to help hold him down for the iv and it's always so hard for me. Caleb can't stand to have his hands or feet touched because he has had so many iv's and needle pricks. He's pretty sensitive about it and here we are forcefully holding down his arms so they can stick another needle in. Our nurse was skilled and was able to get the iv in the first time although she did remark about all of his scar tissue. She also said usually with preemies it takes the full dose of anesthesia because their bodies are used to fighting. I smiled and told her I was already familiar with Caleb's fighting spirit, you can't make this boy do anything he doesn't want to do. She was correct, it took the full limit of medicine to put him under. Jason said that was the hardest part for him, seeing Caleb so limp and lifeless, it brought back many memories. I think it was hard to reconcile those memories of a tiny sick infant to the vision of Caleb now big and stronger lying so still. The test took about 25 minutes, we were in the room with him. Afterward, Jason picked Caleb up and handed him to me and I held him until he woke up. I sat in a rocker with him, so soundly sleeping, and just enjoyed the moment of holding him. He doesn't sit still long nowadays for moments like that. The nurses started to urge us to gently wake him up because he wasn't waking up on his own. The gentle urging turned into moving him to an exam table, jostling him around, undressing him, wiping him down with cold rags, and finally a sternum rub to wake him. It took him much longer than normal to awake and we began to feel a little panicky. As soon as he awoke, he tore at his iv, and I said, "Ah my fighter is back." We stayed a little longer to make sure he could hold down liquids, were given our discharge instructions and were on our way out the door. Not twenty steps down the main corridor of the hospital and Caleb vomited everything down the front of me. He kept vomiting and so we headed back from where we came. The nurses kept us a little longer, changed our discharge instructions to not feed him for a few hours and for one of us to sit beside him in the car on the way home. He was very floppy from the medicine and his low muscle tone. Jason drove home. I sat beside Caleb who slept the whole way home. I rode home in my bra covered by a small blanket because my shirt was disgusting and I'm super classy. Our evening home was long, but we both did feel relieved that the test was over and although we had a few uncomfortable minutes we had no major drama, no machines going off because his heart rate was too high or his breathing was too low. Into the next day Caleb was still dizzy and unbalanced, he would fall over sitting in his crib. He wanted down to play but then would fall and he just was not a happy boy. Around one yesterday afternoon our phone rang and it was our neurology office. We were told to not expect results until Tuesday and so I was a little nervous answering the phone, not knowing what to expect. Can I tell you they took forever to spit out the results! The results were great, no evidence of brain trauma from birth or underlying condition. Our neurologist still wishes to follow us due to Caleb's delays but the news is incredible. I can tell you I feel so much lighter. I didn't realize how much anxiety I was carrying around. I have a renewed sense of hope. It often felt like all of this struggle would be neverending and now I feel it's only for a season. We aren't sure how long the season will last and there is still struggle in it but hope is an amazing, motivating thing.

I think, no, I know I am just hesitant to share, that I have released some of the guilt I carried for so long now. I might touch on that a later time; it's a new awareness I haven't quite processed fully.

So good news in our household. The news felt as good as when I discovered I was pregnant each time; new life, new opportunity, new hope. I feel like I have let go of some things and embraced more of the future I was fearing.

Tomorrow is a big day for us. Caleb has an MRI scheduled, it's been on the horizon since a few days after birth, a follow up for most micro preemies, especially those that suffered brain bleeds like our little guy. In the last two years, I have hoped and prayed that as the time drew closer to the 2 year mark, the doctors would say the scan was unnecessary for our little guy. I hoped his development would be on track enough that it would be obvious he suffered no major ill effects from his birth. I've been holding my breath waiting, hoping just one doctor or specialist would say it was not necessary. Those words were not spoken for us, in fact the opposite, we were encouraged to schedule his test and follow through.

We saw the neurologist two weeks ago, a precursor to this scan. It was a difficult appointment for me because my hope seemed to be on a scale with my reality, which one would outweigh the other? It is not easy for me to hear and to speak of the lag of development in Caleb. It is not easy to hear how he does not measure up to other children his age, even other micro preemies. Development can be so broad, each child is different. However it is obvious how Caleb lacks in every area of development and it is hard to hear that he does not even compare to other preemies of his gestational age. It was very hard for me to have the conversation with our neurologist, although he is gracious and kind. But I also must say, and this may sound odd or even hurtful, at least at the neurologist office there is freedom for me to voice everything on my heart. I haven't been given that freedom much, to talk about my child, his disabilities, his delays, fears for his future, frustration for where we are at. I have many loving people in my life but often my voice is quieted, or my faith is questioned or criticized. And so for the most part I have stopped living out loud our story. I haven't blogged in I don't know how long. I still write, most every day but I do not share.
I sit here today with a quiet house, girls off visiting family for a few summer days and Caleb asleep in his crib. We wont have answers tomorrow but we will have at least started on a new path.
I can tell you I remember clearly the first moments I met Caleb, so tiny and so fragile, hooked up to so many machines, I never imagined the full ramifications of his birth. I vividly remember the doctors pointing to his tiny head and showing us where his brain was bleeding. I remember wanting to scream "Shut up!" The future seemed so far off with all of it's consequences and predictions and the now was so scary and real. I just wanted him to live, to breathe on his own. And it seems like along the way of his life, it's been like that for me, just willing him on to the next step, from breathing on his own to rolling over or sitting up or now walking.
It's been a struggle the last few months with his therapies; tiresome, frustrating, hard work. Jason and I feel as though in a way we are holding our breath for the results of this scan. Our neurologist has told us that even if we have positive results it still does not change the reality of our situation. Caleb is still severely delayed, testing at the one year mark for a boy who will be 2 in six weeks. Caleb will continue to battle and have to work through his delays. Even if we have a positive result from the test, there will be no reprieve from his therapies for a long time. There are days when the results matter very much to me and other days when it does not matter so much. I feel like I have been waiting and anxious for a very long time, wondering how severe the ramifications of his prematurity would be, longing to know into the future.
Caleb has been sick for almost a week, battling a fever and an infection. In fact, we thought we may have to reschedule the scan. His fever broke this morning and so the doctor said to go ahead and come. It's been awhile since Caleb has been really sick and I had forgotten how much my world is rearranged when he is sick, shuffled, prioritized, shelved.
I believe my frustration and my weariness are present in my writing today. And yet I will still post this.