May 30, 2017
In true warrior fashion, Josh is going into battle today, a battle for understanding from his classmates. He had to write a poem a few weeks ago called 'I wish' and in the verses he said that he wished the kids would understand about his heart and what that means for him as he plays and tries to keep up. A good friend of ours who is also a teacher offered to go with him to do a presentation on his heart and stroke, what happened to him but also how that affects his daily life. Today he will stand, vulnerable in front of his class and talk about these things in a hope to gain empathy from his classmates.
I could not be more proud.
I have had a lot of people telling me to pull him from school, suggesting that he should have a break. Here is my thinking on this... please bare with me.
Life sucks. Kids can be mean. The playground is a harsh terrain where kids find out what they are made of and where they learn to overcome. Josh is and has always been a kid who overcomes. What he is learning through this painful process are resilience and fortitude. He's also learning compassion, forgiveness, hope, and problem-solving.
Due to Josh's stroke, he has very poor problem-solving skills but during this process, he managed on his own to figure out that maybe if the kids understood where he was coming from they would have more empathy. For him to figure this out on his own, and to work towards doing that is no small feat for him. This morning we talked about this and I told him how proud I was of him for solving the problem and he said 'Im solving, it's not solved. We don't know yet if it will work.' He is right of course, and now is the time to pray that it works, that at least one or two kids have their eyes and hearts opened to his situation and find it within themselves to be more patient, more loving, more open to being a friend to him. This is my prayer.
All that being said, the past few days as I have struggled to understand this reality that Josh is now facing I have become aware of a few things. He isn't alone. God is with him on the playground, his brain is healing more and more every day, and my kid is one of the toughest, most resilient kids I have ever met. A friend wrote to me and said this: God needs soldiers and he is forming Josh right now. Josh is is in boot camp, the hardest part of training. He has brought your little man into an intimate relationship with him that is beyond what we can fathom, you've seen glimpses of this, let that be your comfort. Another friend wrote: He didn't bring him this far to leave him there. These words have offered me a great amount of comfort and hope for our little man as he does battle with this depression. I don't know what today's outcome will be, but I know that no matter what happens I am so incredibly proud of him for being willing to stand in front of kids who haven't been very kind and to share some of his most vulnerable feelings. It is kids like him that change the world.
We were never promised an easy life, I want God to have mercy on Josh, I want things to be easier for him, I want to see his joyful self back but I am also raising a child who is not my own but God's and God loves him so much more than I do (as impossible as that seems to be); he knows the big picture and he is even now forming Josh in the man he needs to be for the future he has planned for him. Through all of this, I have to hold onto the promises God has given me, that he will do (and has already done) the impossible for Josh.
I could go through a list of 'He will never's' that doctors and therapists have given me over the years but I prefer to list my own "He never list'
He never stops trying
He never lets someone tell him what he can't do
He never stands down in the face of adversity
He never lets fear stand in his way
He never stops trying to be the best he can be
He never quits
There is more to this kid than most will ever know, more to him than even I know and that I am blessed to be his mom is something that still leaves me awed.
So please, say some prayers today as Josh heads into this new battle with our friend. Pray that the kids hear him, understand him, have mercy in their hearts for him, and that if nothing else they respect him for doing what he is doing, such an incredibly courageous and brave stand he's making.
May 26, 2017
For the last six weeks, we have noticed some significant changes in Josh. He has become moody, angry, sad, and extremely tired. We have looked into all kinds of reasons, had many talks with him and yet it persists. His largest complaint is being too tired to keep up with the other kids at school, causing them to not want to play with him and leaving him to be alone through the recess times. It is enough to break your heart. It came to a head this week and I reached out to our neurology team to see if maybe the medicine he is on would cause the anger and moodiness that we are seeing, but they disagreed and told me to contact his cardiologist. So, on Wednesday morning I wrote an email to our cardio and explained what was going on. She called us in immediately (immediately in the hospital world was actually today at 8 am). My heart sunk, I won't lie. I was really looking forward to not seeing her for a year. However, that is life. Everything must be looked at through the lens of 'is his heart okay?'
So, today we went for the ECHO and EEG. After the tests, they paged the doctor and she came right over. Her news was both good and a bit sad. There has been no physical change in Josh's heart since his last ECHO. (GREAT NEWS!) Apparently, she had read my email and expected the ECHO to show that one of his two faulty valves was no longer functioning. So yes, this is good news!
Then we talked at length about how many kids with a heart like Josh's come to an age where they start to become aware of their body and the limitations that their body has. With Josh being the competitive type it would be compounded for him. As he begins to get excluded from things he enjoys because of his limitations (by the other kids, not by us or himself per say) she believes he is dealing with a form of depression, causing the anger, the sadness, the tiredness, the frustrations and explosions we are seeing. She thinks this is a mental health issue and not a physical one per say. This is the sad part of the meeting today. I am thrilled that his heart is okay for now, but I am so deeply saddened that he is struggling right. We have a meeting with a social work clinic to get him talking with someone about his feelings about his condition and his frustrations surrounding that. She also suggested a psychologist.
I find myself relieved, but heartbroken at the same time. I hate seeing him suffer in any capacity, both physically and mentally. I just want to keep him home with me in my arms where I know he is loved and protected. Leaving him at the school, watching him trying to play basketball with kids who wouldn't pass the ball to him, kids who kept fighting over who 'had to take Josh on their team, watching the sadness on his face... if I am honest it made me want to grab him and take him home. Teaching him to face his limitations, to cope socially, to deal with the hurt feelings is harder than even watching him face the pain of open heart because at least with the physical pain you know that there is hydromorphone and that the pain will end.