Photographs by Laurie @ Horizons Photography

March 4, 2014

one stupid clot



This blog has typically been a place for me to share my thoughts about Congenital Heart Defects and how it affects our family, our faith and our journey through life together. It's also been a therapy tool for me, to write out my thoughts and fears into the great abyss that is 'the word wide web' and feel like someone out there has heard me. Today is no different.

I often talk about Joshua's heart, the all consuming problems that lead to multiple surgeries and interventions.. the organ that has caused untold fear, worry, sadness and axiety for him, for us and for his doctors and surgeons. What I don't often talk about though is his brain.

The brain is a funny thing. It can have damage done, a wound, a death, damage and you can't see it. The fact that we caught his stroke is amazing given his age when it happened. I still remember the day we were told he had suffered a stroke. It baffled me to no end that a baby could even have one. I thought it was for old people... I had so much to learn back then and still so much more to learn. They told us that he would probably be fine, that we may never see any signs of the stroke and so we went on with our lives not knowing the devastation that lay hidden within Josh's brain. It wasn't a wound we could see, there was no blood and gore to put a bandage on or sew up. In fact, it's not something that anything can really fix, and this is rub for me. I want to fix my son and I can't. That is where I ache the most. The cardiologist is in charge of his heart, they know what is wrong and they know the steps that are required to make it right; however awful those steps prove to be for him, at least I know that it's being handled and dealt with. Josh's brain is a different story.

Two weeks ago Josh spent 7 hours in testing at Sick Kids, it's called psychological testing, and it's long and it's intensive. It brings to light all of his strengths and clearly details his weaknesses. With all the glowing praise we have been getting from the school I was left unprepared for the reality that exists for Josh. He's bright, he's made a lot of gains, he's improved in many areas, he's smart and funny but he's still language impaired He still is well below average or even borderline in his processing of information, his abstract language, his comprehensive skills and other areas all surrounding his language. 

A new and budding concern is that they are seeing signs of what is called 'acquired ADHD' though they are not ready to diagnose at this point and will not likely medicate because of his heart issues. The center of the brain that had the injury is where language, literacy, and attention all live. Thus it's acquired and not developed. There is also deep concerns regarding his anxiety levels and basic emotional health in relation to his self confidence. Many of these things I knew, I am not blind to the things I see in Josh. Anxiety certainly isn't a shock to me, his attention and constant movement wasn't a surprise, but to see it written on paper, to hear the doctor speak about it in the light of day...

Today, I feel like a million shades of failure. I know that reasonably this isn't on me. I didn't do this to him, I didn't cause the stroke, I didn't not do something I should have done... but I can't fix my son and I feel like a failure. I see who he is under the injury, I see his intelligence, I see how smart he is, I see his talents and I struggle to understand how this happened to him. One stupid blood clot and his life is forever changed. I hear people tell me things about him, trying to convince me or themselves that he's smart and I want to scream. He's very smart, there is no need to convince me, he just can't process as fast, he can't verbalize as quickly, and because of that his intelligence is questioned and that just makes me angry. If I am really honest I will say this whole thing makes me angry, I know life isn't fair sometimes, I get that, but it doesn't make it feel any better. I am still mad, I am still unable to heal Josh, I am still left feeling like I should have done more, I should do more, I still feel like I have failed him, I still feel guilty for signing consent that day, I still feel like I should have asked more questions, gotten intervention earlier, done SOMETHING differently. No amount of talking is going to change that. Owning what I feel doesn't even help, right now it's just a big empty spot where the questions sit unanswered.

When I ask a Cardiologist 'will this fix him' she can answer me. She can say with confidence how much time it should buy him. Whenever I ask a Psychologist or Neurologist or Therapist 'will he ever be 'fixed' the answer is always the same 'we don't know'. Will he ever be able to stand with his peers and have a normal conversation? I don't know. Will he ever be able to sit in a normal classroom? I don't know. Will he ever be teased, bullied, made fun of, because one day when he was three months old a tiny blood clot went the wrong direction and wreaked havoc on his life? I just don't know. It's the not knowing that makes all of this so much harder. How many times have I prayed that Josh would be healed? How many times have I touched his little head in the spot of the stroke and prayed for him... I can't even count the times anymore. It's beyond measure.

This is one of those days when the post is dark. I know that tomorrow I will see all the things in the report that are positive, I will see the areas (like his vocabulary) that have made significant gains. - vocabulary for example registered at a two year old level the last time we were there, the spring before he went to JK, today he is at a five year old level - significantly higher, significant gains. Tomorrow I will see these gains and I will gather myself up to fight another day but today I need a day to mourn what could have been, to allow myself to be mad about that day in April 2008.