Two years ago today I got a call that didn’t change the
course of my life, but it did explain more about the course I was on. It shed
light on something that was already happening. That phone call was a defining
moment, it will be forever in my mind, but even if I had never answered the
phone, the answer would have been the same.
A few days earlier my six month old son had an MRI of his
brain. It was a scary procedure because it had to be done under full sedation.
I held him as he fell asleep. The nurse warned me he would look like he had
died. That was exactly how he looked. I cried when I was alone again. But the
procedure, we were told, was to rule out a neurological reason for his
nystagmus (or rapid eye movement). I wasn’t super worried. We already knew he
needed glasses. I thought the glasses would fix all the problems.
Then as I was driving home on June 21st, 2016, I
got a call from our pediatrician. I don’t remember the rest of my drive home. I
probably shouldn’t have been driving. She told me that the MRI had, in fact,
confirmed a neurological reason for his nystagmus. She said she already had a
call in to the Children’s Hospital Neurodevelopmental department for a
consultation. She said words I couldn’t spell that day, but now I can spell in
my sleep. Peter has a condition known as Optic Nerve Hypoplasia. That was the
moment I learned my son had a birth defect. His brain didn’t form correctly in
utero. You don’t forget the call when someone tells you your baby’s brain
wasn’t formed right.
I went home and tried to tell my husband about it, but I
didn’t even know all the words and I certainly didn’t know what it all meant. I
cried some more. I cried putting my baby to bed. I cried trying to tell our
pastor about it the next day. I didn’t want to tell many people. I didn’t know
what to say. I barely understood it myself. I wanted it to go away.
Then I picked up my baby the next day and started to sing
like I often did when he cried (and this poor baby who couldn’t see cried a
LOT). “Jesus loves you, this I know, for the Bible tells me so…”. And I cried
again. This was new information to me. It was not new information to God. He
knit Peter together. He knew about Peter from the beginning of time. He loves
my son more than I can imagine. I felt the love of Jesus wrapping us both in
his arms.
I was already a really good mama bear because of Isaac, so I
got right on figuring out who we needed to talk to for understanding more about
Peter’s brain. We had to meet with a few specialists over the next few months.
Early Intervention because a huge part of our lives. We were assigned a teacher
for the visually impaired who has become a big part of our lives. I started asking for help. I started gratefully accepting any help that was given. A village would be needed to raise Peter.
There were many nights I still cried over Peter. I couldn’t
fix his brain. I could only help him become his best self. I could be the best
mama bear advocate I could be. I could be his best cheerleader. I could remind
myself and him that “Jesus loves you, this I know, for the Bible tells me so…”
And then two years went by. The sting of the phone call
past. The path was more illuminated by that call, but still pretty scary. I still
don’t want him to have this. I want his brain whole. But I love who he is and
how far he has come. He hadn’t met any two month old milestones at six months.
He has met most of his two year old milestones. He attends preschool. He uses
his mobility cane like a little boss. He loves his sister and brothers so big.
He comforts me when I still cry over him.
I am so proud of Peter. He doesn’t know his brain is
different. He just does his life and he does it well. He can teach us all
lessons about love and life and perseverance.
Today I think about that call, but I also think about the
little boy Peter is becoming and I smile, even if through the tears.
