The Night Before Kindergarten

We have been preparing for weeks, or months, well, truly, for years (read below). Tomorrow is the day. Peter will put on his backpack, make his way down the block, get on the big kid bus, and finally go to Kindergarten.

He is ready.

My head is ready.

My heart is so not ready.

I promised myself years ago that I wouldn't totally lose it when my kids would go to Kindergarten. There are so many parents who would give anything for this moment who won't see their babies until heaven. I get mine back by dinnertime.

And I have kept that promise, yet there is also a tug at my heart with all the feelings on the night before Kindergarten. Especially for Peter....

Because 5 years ago our world was rocked by his ONH diagnosis. I have written a lot about that journey, but this week holds a special place. One of the questions I asked early on, like any mom would even though no one can exactly answer, was "what will his life be like? "what will he be able to do or not do?". Like good professionals, no one had an exact answer about the future but the one "long term" goal that was noted was main stream, general education Kindergarten with support for his vision. As he got older we learned that would mean attending a different school than his brothers. That was fine, as long as he had good support. Then a couple years ago his vision made a big leap and he was no longer in need of his white cane or learning Braille. He progressed academically in leaps and bounds. So not only is his starting general education Kindergarten tomorrow, he will be at the same school as his brothers. I never even asked or imagined and God answered anyway! So my heart is celebrating!

But more than any of my other kids, Peter has been a full time job. We met his diagnosis with our heads held high. There wasn't anything I wouldn't try or therapy I would turn away for the first 3 years of his life. I researched, called, explained, tried out new ideas like our future depended on it. Because it did. And it worked. God made little brains to be very flexible and Peter's hard work helped grow his brain in new ways. Then tomorrow, someone else has Peter for the majority of the day and that feels very very strange after the last 5 years.

Peter is also my last little boy, and while Ellie will be the very last to school, this #boymom is feeling fragile tonight. So my tears are just close to the surface as I write this.

Peter is ready to go. Peter will do great things. I said when Peter was a baby that God had a special plan for Peter because God made Peter special. I know this in my head and my heart. So I will watch him get his backpack, walk to the bus stop, and head to Kindergarten knowing that the world needs a special Peter, but there will probably be a few tears in my eyes as I walk back home.

Jesus Loves Peter. This I know.

It has been a hard 10 days as Peter’s mom.

It has been a hard 3.5 years as Peter’s mom. It has been almost exactly 3 years since we learned that the symptoms we were seeing in Peter were the result of a congenital abnormality in his brain. Over time we adjusted and Peter is just Peter. He is more work than a typical child. But he is just as wonderful and perfect and loving as any little guy.

But sometimes it just gets hard for a season. Not necessarily because of Peter but because of the world he lives in. One that administrators seem to rule. A world where he gets the short end of the stick and he didn’t even do anything wrong.

So, it is hard to be his mom because I see the injustice and the hurt and the hard on my boy.

In the last 10 days there have been insurance problems leading to his therapy being cancelled indefinitely. There have been school problems where his heart and spirit were ignored, even by generally well-meaning adults. I have cried so many tears. I have made so many phone calls. I have fought so hard for him. Some I can fix and some I am still trying. I don’t really ever stop trying!

BUT, through it all I have to remember something.

That God loves Peter even more than I do. That God knows what Peter needs even more than I do. That God sees where this is all going and I just don’t.

The night we first got his diagnosis was one of the scariest of my life. I can recall those emotions in a heartbeat. I cried as I rocked him to sleep that night. And then through my tears I tried to sing his normal nighttime songs: You Are My Sunshine and Jesus Loves You. I barely got through the first one. He will ALWAYS be my sunshine. Nothing that the doctors say can change that. Then I sang “Jesus loves Peter, this I know” and I couldn’t keep singing. Because it was true. He does love Peter. Not Peter with a perfect “normal” brain, He loves Peter with a “not quite formed” brain. He loves Peter more than I do. I clung to that fact in that moment.

I have held that fact close for these years of Peter’s life. God knows what therapy Peter needs. God will help us find a way to pay for it. God will help guide the teachers at school. God has held Peter and God will not stop now. To believe anything less is to let the Devil win.

I still have a lot of phone calls and emails and forms. There is some work on the ground that has to be done. But I will continue to pray and ask for what Peter needs. I don’t know what his future holds (as much as I would like some answers even in the short term) but I know who holds his future. And the one that hold his future is the Jesus who loves him. This is I know.

Two years later

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 21^st, 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.