TMS- Week One

Just a normal Thursday, really. The babies were down for their morning nap and though tired and very ready for Chad to be home for the weekend, I was unloading the dishwasher when I wanted to be napping myself. I was psyching myself up to do the chores that I had planned for that day during their morning nap since for the next 7 weeks, I am commuting down to Presbyterian Hospital for TMS treatments during their afternoon nap. This week was the first full week of treatment and today would be my fourth trip downtown in 4 days and to be honest, I was already feeling over it. An hour commute roundtrip for an 18 minute treatment felt tiresome.

I started checking things off my list like dusting and wiping down my kitchen counters. As I moved to start a load of laundry, I thought to myself “I should open the blinds”. Clearly, this is crazy talk because I’m the consummate blinds-closed lady. I like when it’s dark and cozy and you can curl and watch a show or read a book, neither of which I had time to do anymore. I’ve always said I loved rainy days but in truth, I kinda hate them now. The only thing harder than moving two kids around is moving them around in the rain. And hello, the humidity? My fragile postpartum hair needs no help with not looking it’s best. So I opened the blinds around my kitchen table. Correction: I opened the blinds that were already up half-mast because two babies think that playing with them is the height of entertainment. I systematically moved around to all the other windows on the first floor and did the same. And just that action and the realization that it had occurred to me to allow light in made me realize that slowly, I’m getting better. I’m getting less depressed. I’m less anxious. I have more energy than I ever remember having. And it’s not nervous energy, it’s real motivation. My neurons are firing. And this magnet is working.

The metaphor wasn’t lost on me. The light is breaking in and the darkness is receding. I found myself equal parts joyous and terrified. What if it doesn’t last? What if tomorrow, it’s gone and I feel the heaviness again? But sure as the sun poured in, I could feel a difference. I’ve had 5 sessions. 5 18 minutes cycles of the coil “tapping” on my frontal cortex and getting things moving that feel as if they have been dead. I did two treatments last week and then went two days without them on the weekend. This weekend sucked! I felt like my brain was freaking out. They warned me that it could be a rough time and it was. My brain was liking the magnet and it was having to go without it. I felt more energy than I have felt in months after my first treatment last Thursday. I haven’t felt that consistently but it made me feel hopeful. Today, I felt undeniably, indescribably good. And I still had poopy diapers to change and mouths to feed but I felt good. I cried I felt so good. And if I wake up tomorrow and I have to force myself to go through the motions, I know that I will be grateful for just feeling good today. And hopeful that the next 31 treatments make today look like mediocre.

If today, 5 treatments in, is a promise of what’s to come, then Praise the Lord. I know it just as much as I know that Leia won’t sleep throughout her whole nap and Luke will be so excited to eat avocado that he doesn’t chew it. I know that if I create the opportunity, light will shine in. That’s how sunlight works. And that’s how the Lord works too. Whether it’s a good day or a bad day, He will shine in if only I allow Him to.

Small Update: 7 treatments down, 29 to go. The blinds are still open. They are wide, wide open. God is faithful and good and magnets are amazing.

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Twenty (one) Fingers and Twenty Toes

It sort of feels like we have been keeping a secret. I would say that I didn’t intend to but that wouldn’t be the complete truth. Granted, the time to blog or put any thoughts down is pretty rare with twins but this is something I’ve wanted to write for a while and have shied away from for longer than I’d like to admit.

Now that you’ve all read our harrowing (though hopefully not too graphic) birth story, I’ll pick up where they’ve just wheeled me into my room after the PACU and Chad and his mom are waiting. In a haze of pain and anesthesia, I found myself searching for two baby beds and looked longingly at Chad to explain where they were. My sweet husband, knowing me so well, pulled out his phone and showed me my first pictures of my babies. His first words were “they’re breathing on their own” and then their weights, probably the detail I had been most anxious about during my pregnancy. Little did I know that 8 pound babies can end up in a NICU just as easily as 5 pounders. He then smiled at me a slightly strained smile and announced “Luke has an extra thumb.” He knew that this detail would shake up his usually-fragile-but-currently-already-shattered wife. Excuse me, what? Beg pardon? My baby has 11 fingers? What is this, The Princess Bride? Jokes aside, I was rocked by this news. Instantly, I felt like I had done something wrong in my pregnancy and that Luke was suffering those consequences. Would this extra digit mean developmental issues to come later? It was one of many scenarios that I had never even thought to consider.

I feel that I need to pause here and do some explaining. Some of you might be reading this and thinking “chill out, woman, it’s a thumb, not an extra head.” Some of you might be totally freaking out. I want to give you the space to do either. I can only tell you my own process and how I have been changed by this precious boy that God has entrusted me to raise.

I’ve had a long, long battle with appearances. For most of my life, I have wanted to project that everything is fine, everything will be fine, and I’m good. Infertility had a lot to do with changing that. I now crave honesty and authenticity. I surround myself with people who desire the same and are active in that pursuit. Those willing to be vulnerable but also proactive in their own growth. When your husband tells you that your baby has 11 fingers, you kind of forget about that battle against appearances and just have a panicky thought of not only “what does this mean?” but also “what will people think?!?”

If not for Chad, I probably would have stayed in that panic. If not for Chad, I don’t know where I’d be. I am a woman truly blessed. Chad calmed me and wiped my tears as I allowed the anesthesia to wear off and this new realization to sink in. My baby was born with a genetic abnormality. He was not “perfect.” And he wasn’t in my arms.

I read an amazing article when the babies were about 3 months old that really resonated with me. It was one woman’s story about how she, and we as a culture, are trying to create what she called “superbabies”. She talked about how she ate only organic, exercised daily, attended all the birth classes, and did everything perfectly and her baby was born (in a water birth, no less) underweight, underdeveloped, and with a fairly severe chromosomal disorder. She is 5 and still in diapers and weighs only 22 pounds. This woman’s story is not my own. Shoot, my biggest pregnancy craving was a Southern greasy fast food joint called Cookout. Ketchup could have served as it’s own food group for most of my pregnancy. But I think there is a part of every woman who wants that “superbaby”. The oft quoted phrase of “we don’t care if it’s a boy or a girl, we just want a healthy baby” rang in my ears like a sad failure. Was my boy not healthy?

What about the babies who aren’t born healthy? Do their parents not rejoice when they first see them? What about the babies like mine, who are fortunate by many, many standards, to have had what’s considered a short NICU stay? What about my daughter who has a hemagione (cluster of blood vessels) in her hair? Or my son with his sweet little lobster claw hand? Or what about Jimmy Kimmel’s son born with a terrifying heart condition? Or the countless other babies in the NICU that surrounded my babies for 8 days and 20 days respectively. Are they any less wonderfully made or knit together by God?

I’m terribly ashamed to admit that I watched Luke insanely closely for the first 2 months of his life. My first glimpses of him and moments with him were spent in awe but also fear as I tried to see if there was anything else “wrong.” I would read into his grunts and his cries, looking for there to be something more. Was his colic different or worse than Leia’s? His hair is falling out, Oh Lord, is there something wrong? He’s really solid and dense, what does that mean? He sure does cry a lot! What’s up with that? None of it was helped by the fact that we couldn’t get him to finish a bottle for the longest time in the NICU. It wasn’t that he would get full or fall asleep, he would just stop sucking. He knew he would get the rest through his nose tube so why go to the effort? He’s Chad’s son, after all.

I hate that I spent the first two months+ of his life looking for what was wrong rather than seeing what was absolutely right about him.

Luke came home from the NICU on Wednesday, February 1st. The babies original due date was Wednesday, February 1st. These babies and their milestones and accomplishments will never be in my timing. This baby boy of mine will not be rushed. He will do things in his own time and we will celebrate with joy when he does. I will move heaven and earth to help him but I had to learn when he was 20 days old that it’s not going to go according to my plan.

The changing point for me happened when I saw him smile for the first time. Sappy as it sounds, the boy smiled (in response to a fart, of course) and something lifted and I felt a peace about Luke I had never felt before. This boy of mine, this big-feeling, loud, strong boy who kicked my bladder mercilessly for months, will always keep me on my toes. Just as I will form and shape him, he will do the same to me. Loving him will change me. I had to stop and let him be who God intended him to be, whether that meant he was “perfect” or not. I had to embrace the ways he was different and allow myself to begin to do the same in my own life. I am his model and will be a voice in his head and I so badly want to be one that assures him how awesome he is in every way. His smile was my rainbow from God, telling me that my son is in much greater Hands than my own. This left hand that scared me and worried me was uniquely designed by Him and all of Luke will hopefully be used for His glory.

In a little over a month, we will wake Luke up and take him down to Levine Children’s Hospital, as renowned and wonderful a hospital as I could ask for, and they will operate and remove Luke’s extra thumb. I can say with complete sincerity that I, for one, will be sad to see it go. He will be in a cast for 3 weeks but the surgeon expects there to be no complications and said that she wouldn’t worry about any other developmental disorders. She sees no cause for concern. His polydactyl is the most common type and the one they remove the most. Luke will go on for the rest of his days with just 10 fingers, barring any freak accidents or stupid hijinks. To the rest of the world, he will be perfectly “normal.” But I know, and now you know, that Lucas Richard Beach bears a unique thumbprint of the Almighty and he has since the day he was born.