At 12:45am on Tuesday you woke up screaming, which was very unusual for you. Your dad and I were up for two hours trying everything we knew to try to console you; we even gave you a bath. When nothing worked, we called your pediatrician and he told us to take you to the hospital. Of course, once we put you in the car seat and took off, you fell right to sleep. We tried to wake you up once we got to the hospital, but you just wanted to sleep. We thought you must be fine or maybe just had bad gas, so we turned around and drove back home.
Once we parked on our street I picked you up out of your car seat, being careful not to wake you up.
And then you started to seize.
We drove back to the hospital. Fast.
After two days and a whole lot of tests, the doctors decided that the schizencephaly is causing your seizures, and that for now you should be on daily medicine. Medicine that makes you sleepy, and grouchy. It stops the seizures, yes. But so far you just don't seem like you, and I am hoping, praying that will change.
You will never remember the last two days, but I will never forget them. I will never forget the feeling of my heart in my throat as we drove back to the hospital, or how limp your poor, tired little body felt in my arms as I ran into the emergency room with you. I will never forget how helpless you looked, lying on the hospital bed hooked up to all those monitors and IVs, or how desperately I wanted to take all your pain away.
I will never forget rocking you to sleep in your hospital room, with tears running down my face, asking God how He could let this happen, how I was supposed to not be mad at Him right now, how He was planning on fixing all of this. Asking Him to help me trust, to help us be good parents, to give the doctors wisdom. To heal you.
I will never forget the relief I felt when you opened your eyes and smiled and started babbling away.
I will never forget, but you will never remember. You will not remember this pain, this exhaustion. You will not remember the doctors, or the nurses, or the tests. You will hear us tell doctors about it when they ask about your medical history, or when we tell stories about it years and years from now, when it will all seem like a bad dream...but you will not remember. And for that, I am grateful.
You may not remember all of this, but it is shaping who you will be for the rest of your life. I believe that all of this will make you more a tune to the pains and needs of others, and teach you to be kinder, more compassionate to everyone. I believe all of this is making you tough as nails, making you strong, able to handle whatever life throws your way with grace and patience. I believe all of this is making you grateful for the life you have, grateful for every blessing God grants, grateful for the things you do have and not anxious about the things you don't. And I believe God is teaching me to be all these things through you, and you are teaching me so much: you never complain or fuss, you never worry, you are only interested in the present moment, you are unfailingly kind.
I believe the medicine is temporary. I believe you will outgrow these seizures. I believe that you will keep exceeding the doctors' expectations by leaps and bounds and miles. I don't believe that you are going to live a normal life: I believe you will live an extraordinary one. I believe that you will grow up with an amazing story of Grace, of Healing, of Hope.
I love you with every bone and fiber in my body, with all the force of the universe, and I am infinitely proud of you: of what you have been through, of who you are, and of who you are going to become.