May 22, 2015

raising a baby with tuberous sclerosis


I've been putting off writing this post for six months now. It's something I need to write, for my own remembrance, but life since Seth was born has been hard. Very hard. Exhaustingly, overwhelmingly, heartbreakingly hard. But also beautiful and wonderful and joyful. And I need to write it down. But it's like how I love the movie Cast Away but I never want to watch it. Too much of an emotional investment. That's why I haven't written this down yet. But I need to! So I am.

The first four months of Seth's life exist in my mind as a blur of tears and wondering why we had children at all. It didn't have much to do with the tuberous sclerosis, actually, except for the millions of doctors appointments (seriously, I counted, and it averaged one appointment per week for the first six months. That is a lot). It was just that he was a colicky newborn. If you haven't had a colicky newborn, don't do it. Carter was in behavioral protest mode, wanting his old life back where he got all the attention, Sam started school full-time again (plus work full-time) when Seth was a month and a half old, and Seth fussed all the time. All. The. Time. He had to be held and bounced and nursed constantly. Poor Carter was so bored and attention-less. And, you know, no one slept ever. I got in the habit of getting pajamas laid out and dinner ready to pop in the microwave (cooking! What's that!) and blinds closed and everything ready for the Two Children Bedtime Routine I Had to Do By Myself by like four pm when it was relatively calm because trying to do it when everyone was tired and screaming was something I dreaded all day long. The Two Children Bedtime Routine I Had to Do By Myself was a thing. It deserves an actual title because that's what it felt like to me. The event I dreaded and simultaneously looked forward to all day because if I could complete it, it meant a couple hours of freedom. Ha I just remembered that back then it used to take an hour or so of bouncing Seth in his bouncer in the living room (because Sam was asleep in our room where the crib was) before I could risk transferring him to his bed. Oh newborns! The ridiculous things we do for them!

I really really really considered being done having children because I was so miserably tired. Poor Sam was gone and exhausted all the time and I was trapped in the stupid house with the very unhappy babies. It was a party. There were good days, of course. Like weekends and holidays. And I would take the kids to my parents so someone else could bounce the baby and play with the toddler while I sat on the couch and sighed loudly. And we got Seth on some antacids and that definitely helped. Poor baby. And really, he was the sweetest for the few minutes every hour or so that he was calm. And we started purposefully giving Carter as much positive attention as we could and that helped him settle into our new life much better.

So we made it out of the newborn stage. And the colic went away. But Sam was still gone most of the time and I still had two kids to take care of by myself. And then, only two days after I posted Seth's birth story, only one day after he hit four months and I posted on instagram how great and miraculous it all was that he was fine, he had his first seizure.

The first one was the worst one. And I immediately knew what it was, and moreover, what it meant for our future. And I sobbed at Seth to please stop, no no no no no, please no, don't do this, no. I had hoped so much that maybe he didn't actually have tuberous sclerosis or maybe it was going to be a very mild form and we would be fine. The geneticist had told us when he was two weeks that if he didn't have a seizure for the first year, he would be in great shape. But then he did. And a seizure means brain tumors. It means medication. It means immediate medical intervention and the very real chance of developmental delays. I knew all of that immediately and watching that first one felt like my heart was shredding inside me.

We went to the ER after that first one and then started on the road of EEGs, MRIs, neurologists, and medications. We did a round of super high dose steroids to begin with, which stopped the seizures for a couple weeks but had a trade-off of a terribly fussy baby. Steroids are the worst. They tasted awful and we had to shove so much down his throat every night. And they made him so irritable. Poor, poor baby Seth. We tapered off those and had a little while of a preventative med, Keppra, that he also hated, but then the seizures started creeping back. So we tried another round of the high dose steroids, again with the hating and the terribleness, but it didn't work the second time. I should also explain that these seizures are not what you normally picture when you hear the word "seizures." They are a specific type called infantile spasms. Not nearly as scary to witness, thank heavens, and not as traumatizing for the patient, I don't think. But still damaging to the brain in the same ways. Anyway, after the second round didn't work, we started on a newer medication called Sabril with its terrifying possible side effect of permanent peripheral vision loss which they cannot predict whom it will affect. So every six months we have to have an eye exam, which because Seth is so young, has to be performed while he's totally out, under general anesthesia. It's treated the same as an actual surgery, just without any cutting open anything. And then the eye exam doesn't actually prevent vision loss, of course, it only tells us if it has started so we can stop the Sabril. Lovely, right? But, it has made some difference in his seizures, so that is great. And it doesn't bother him, which is even better. The colic was gone, the steroids making him hate life were gone, and his own wonderful personality could finally be seen. We've been on the Sabril about four months now and since then, he's been a beautiful, happy, sweet baby.

We added another medication, Trileptal, on top of the Sabril about six weeks ago because the seizures kept pushing through periodically. We haven't quite seen a complete ending of the seizures even now (although they are less frequent and less intense) and maybe we never will. Sometime recently I had to grieve again at the loss of expectations. The geneticist who told us that no seizures in the first year was best, also told us that if he did have them and we could get them under control (stopped) quickly, he would also be fine. So of course I expected that, too. But it hasn't happened. And I have had to come to terms with the fact that he is delayed developmentally. All my friends with babies Seth's age were posting things their babies could do, just as updates as they grew, and Seth wasn't doing any of them, not even close. Not sitting on his own, not playing peekaboo, not really interacting yet, etc. It was painful to accept. Every time he had a seizure I would worry and cry and ask God why are these still happening? And every time I noticed what he couldn't do yet, I would do the same things. It was a combination of letting go of my expectations, realizing that Seth is beautiful just as he is, learning that God knows and loves my little baby, and figuring out how to hand over the burden of my fears to the Savior that made me ok. There is so much power and beauty in the Atonement that before this experience I had only glimpsed. Now it is my rock to cling to in the stormy sea. I always knew that theoretically I could use the Atonement for more than my sins but I never knew how. Now I do. Christ is yoked to my burdens with me and will pull almost all the weight if I let Him. I can't ever express my gratitude to Him for that enough.

After accepting that things as they are will be ok, I called early intervention services and now Seth has an occupational therapist that comes to our house twice a month and he is progressing! He can sit up on his own! He almost has the pincer grasp! He makes faces and imitates laughter! Even if he's slower than a normal ten month old, it isn't bad. That was/is the take-home message for me. It isn't bad. In fact, it is good! He is all things good! There are hassles and inconveniences, but Seth himself isn't difficult. He is sweet and loving and learning and growing like any baby.

So now, life is better. I have a much better perspective. The ins and outs of the tuberous sclerosis are not more than I can handle, in partnership with my Savior. Sam is graduated and home so much more now and that has made a huge difference. Seth is a doll and I love seeing his face light up and giggle at everything every day. And Carter is a gem most of the time too. Smart as a whip, I swear. He talks like a six year old and has the funniest imagination. He asks questions all. day. long. and you can practically see his brain working as he assimilates your answers and works out new paradigms. He plays with and takes care of Seth, too. They laugh at each other constantly and I'm getting a glimpse of the bond they're going to share forever, I think. Makes it all worth it.

This is a novel and probably too self-indulgent to really publish but I will anyway, at least for myself and whatever posterity might want to read it eventually. If you are actually still reading (bravo!), know that I know that my life is so much easier than many have it. There is so much to be grateful for and I don't intend for this to read as a huge complaint but I did want to be honest about how I was feeling at the time. Overwhelmed and scared and tired, but certainly not with a monopoly on pain or hardship. And finally, know what I have learned from this. God doesn't abandon us, ever. He knows us and He loves us. We are His children and we have His ear, always. We can't do it alone and we never have to.

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