I sucked snot from my baby’s nose today. Through my mouth. I was disgusted, but when you’re suddenly afraid that a little congestion could mean the end of your baby, you do what you have to do.
Oliver and I snuggled quietly for the first full hour after he came out.
Three weeks ago, we were in the children’s hospital waiting anxiously to hear the results of our five-week-old’s MRI. He had been having tiny seizures every so often since birth, but they had suddenly jumped in quantity. We were dreading the announcement that our baby would have epilepsy, which seemed like such a worst case scenario at the time. Instead, the neurologist came back with a word that even my dad, a family practice physician with 30 years’ experience, had not heard of – lissencephaly. It’s so rare that this program is telling me it’s a misspelled word. Even WordPress hasn’t heard of it. And suddenly, we really, really wished our baby had epilepsy.
Newborn portrait session
What we learned over the next hour of research (of which there is startlingly little on the entire interwebs) is that our little boy’s brain did not develop in the womb. Only two sections came out correctly and the rest remained smooth, rather than developing the typical grooves and folds in a normal brain. This is a developmental “mistake” that can happen in 1 in 85,000 to 100,000 babies. Yea us. Oliver will always have seizures, which may not be controllable someday, and he will likely not develop mentally past the capacity of an infant.
We felt like the doctor told us to go home, preorder his wheelchair and cancel all our appointments for the rest of our lives. We cried a lot. A LOT. Our daughter, Margot, is a healthy, bouncy, snarky, going-to-be-6-ft-tall three-year-old. She’s advanced for her age. Her intellect and humor already blows us away. How could this happen?
Margot has still not stopped petting her brother’s head every couple of minutes.
After three weeks and 500 conversations on the nature of God and this crappy, crappy world we live in, I’ve come to one conclusion: this is our boy. He is beautiful and he is a miracle. And the beautiful thing is, we’re given opportunity to see every tiny accomplishment he has as exactly that – a miracle. We let it slip by so simply with normal children. We check things off our milestone “to do” list. “Head up, check. Tracking, check.” With Ollie, I’m searching, waiting for the tiniest thing from which to draw more happiness than he’s already brought us. I’m not sure what his grand purpose will be (and there is one, people, I know it), but this one is pretty great. He will remind us of the beauty in the little things in life. He will remind us to take joy in simple gifts, real relationships, and defending the vulnerable.
I had already started planning this blog before Oliver’s diagnosis of this marathon of a condition. It was going to be an outlet for me creatively and a place where I can help my friends and others with finding ways to bring a little pretty into their lives without hurting themselves financially. And now I know that it is also a place for me to record my family’s journey in finding beauty in our home and our children (like the beauty that is sleeping more soundly because they are not choking on their own snot) and a challenge for you to do the same.
If you are here just to keep up with this personal side of our journey and design and fashion are not your bag, feel free to subscribe to the posts about Oliver and our family alone in the slider bar to the left. It will filter them out and deliver them straight to your mailbox. Otherwise, I hope that you’ll bear with me as I use this new venue to explore a little more of myself. And maybe you’ll find a little pretty along the way.