I looked over at Robert’s desk one afternoon when he was around 13 years old, after his teacher called me back to his bedroom at the end of the teaching session. There was my very calm son sitting in his wheelchair quietly studying his blocks. It was a familiar scene. He loved his colored blocks.
“Do you see it?” his teacher asked.
“See what?” I responded.
“Robert is separating his blocks into color groups!” she exclaimed. “He hasn’t done that before.”
I almost cried. I was looking right at Robert and the colored blocks on his desk, but I didn’t recognize his skill. I didn’t notice what he was doing without his teacher’s explanation. He had never demonstrated that ability before, at least to my knowledge. This was very exciting! We watched him quietly as he continued to sort the blocks by colors.
I could not understand his actions because I didn’t know what I was looking for. My vision was focused on what I knew experientially.
This month is Epilepsy Awareness Month, and seizure “awareness” was foreign to me before 1999. If you told me 25 years ago that, one day, I would not only recognize, but understand many types of seizures, I would not have believed you. I probably would have laughed because I had never seen a seizure, so recognizing one was unrealistic. But, oh how right you would have been.
Now, I believe I have witnessed almost every type of seizure. Most of them were a part of Robert’s life. When he had his first few large, generalized seizures (the ones you would undoubtedly call a seizure), I could describe them, but didn’t know what they were. I guessed they were seizures based on nothing more than what had been shown on television. As seizures were often incorrectly portrayed, he wasn’t “foaming at the mouth,” and he wasn’t “swallowing his tongue.” Those two depictions are false accounts many of us accepted in the past as factual. In Robert’s case, his body just moved in rhythm back and forth with rigid, tense muscles in those first horrible moments. Though I didn’t know what I was watching, I knew it was something bad.
Many years later, I learned the somewhat odd behaviors I had observed for the first few years in Robert’s life were multiple, daily seizures. They had been disguised as cold and hot chills during the day and throughout the night. His pediatric neurologist explained to me that his appearance of being cold and having small shaking episodes were small infantile seizures. It was devastating for me to hear this. I didn’t know what I didn’t know.
Throughout Robert’s life, his doctors always helped me to deal with the present seizures in his life and not look back to what was his initial seizure and mitochondrial disease onset. I couldn’t do anything about a disease that began in his first cell. No matter how hard I tried, this was beyond me. I didn’t know the facts about Robert’s disease when he was a baby. When I saw him shaking mildly as an infant, I just put a baby blanket on him because I thought he was cold. (I could cry a bucketful right now looking back.) When he woke up in the middle of the night drenched in sweat and lethargic, I thought he was just too hot in his baby crib, so I just turned his ceiling fan up higher. Looking back, I feel like I should have known there was more to it. Many times, when I entered the twins’ room at night, Victoria had climbed into Robert’s crib and was cuddled up next to him. It was as if Victoria knew something, even though she didn’t know what she was perceiving.
I would love to tell you I now have learned so much that I have peace about not recognizing those very early seizures, but I cannot tell you that truthfully. I still feel a sense of guilt that I didn’t scrutinize some of his behaviors. Can you relate? Have you ever spotted something but didn’t know what it was in your child or other family member? Some disabilities are subtle in their manifestations. It could be a child on the spectrum whose symptoms are mild and almost unrecognizable early on in their life. Or it could be a sudden manifestation of a disorder whose previous symptoms were just “unexplainable.”
There are things we don’t recognize. There are symptoms we don’t catch because we don’t know what we are watching. We don’t have the experiential knowledge to explain. We just don’t know.
What advice can I give you? What “life unexpected” wisdom can I offer? Every person and situation are unique; however, several thoughts come to mind:
~ Don’t beat yourself up for things you didn’t recognize. You just didn’t know what to look for.
~ Let go of your veiled vision as soon as you can clearly identify what is going on or that something isn’t right. Someone may need to help you let go of your expectations. Denial seems to only delay treatment.
~ Acknowledge that you may not understand it all. Trust that you will have the information you need when you need it to make the best decision.
~ Look for divine intervention. God does see you, and He does care.
Just like I did not recognize Robert’s colored block groupings, I did not recognize his infantile seizures. I didn’t know what I was witnessing in both instances because I had no experience that spoke to my observations. It is heart-wrenching when we realize we don’t know it all. We are to champion and protect our loved ones. It feels like failure when we miss something. But it is not.
Every day, we have the opportunity to see, really see our loved one. We may not comprehend everything about them, but we can look intently to understand. There will be things we can’t detect yet because, perhaps, we are not ready to acknowledge them, such as a diagnosis that would be too devastating to hear about our child when they are so young. Or maybe the treatment or medication needed is not available, yet. I don’t know. I do know that what you don’t recognize in the moment may be because you were not able to, or you needed help to see it.
I didn’t notice the colored block groups because I didn’t know sorting was a possibility in Robert’s skill set. On the other hand, I couldn’t discern those early seizures because I believe I wasn’t ready to surrender to his diagnosis. I still had some protection “fix it” and fight to “cure it” in me before I could surrender. I can’t see some things, still, for any number of reasons. There are things on this journey that I can’t see…until I can see.
I hope you can accept that this journey is full of things you cannot see. In time. In time, you will see, and you will be enough.
Listening Library: God Will Work It Out (feat. Naomi Raine & Israel Houghton) Maverick City Music
“When I am afraid, I put my trust in You.” (Psalm 56:3 NIV)
God Will Work It Out
Before I knew my name, before I drew a breath He was making ways for me Now and every day, in each and every step He is making ways for me
When my heart is full of doubt Feels like faith is running out I've come too far to turn around I know
God will work it out God will work it out One thing I know One thing I've found God will work it out (whoa) Oh, yes, he will Oh, things are coming together
Pushing past the fear, fighting to believe He is making ways for me And he won't let me down, never ever leave He's still making ways for me
When my heart is full of doubt It feels like faith is running out I've come too far to turn back 'round I know (I know)
God will work it out God will work it out One thing I know One thing I've found No, I know God will work it out
Oh Be encouraged Be encouraged Be encouraged, oh
Be still my soul Be still and know Lean in, take hold In God alone
God will work it out
Oh, I know God will work it out
One thing I know
One thing I've found
Oh, my God will work it out
Songwriters: Christopher Cleveland / Nate Moore / Aaron Moses / Naomi Raine
God Will Work It Out lyrics © Curb Word Music, Bethel Worship Publishing, Mouth Of The River Music, Maverick City Publishing, Heritage Worship Music Publishing, Naomi Raine Music