October 2, 2014
I wrote yesterday about the stroke team meeting to discuss Josh's case yesterday... I've been sick with this nasty cold and we had Beavers last night so it took all my energy just to accomplish the little things like dinner and Beavers and getting them into bed; I all but forgot that they were to call me yesterday to fill me in on what was decided (if anything). However, at 8:00 last night I got the call. They have discussed it as a team and have decided that we need to do a sleep deprived EEG... (basically we wake him up at an ungodly hour and take him to the neurology ward for an EEG, the premise being that we will see things on the EEG that we wouldn't see if he was more awake and hopefully where he may fall asleep and we can also see what's going on in his sleep.)
While I hope and pray that nothing is happening I can't help but hope that they can see something, anything, that would help explain some of what's going on with him... does that make me horrible? I want answers and the brain is so mysterious to me, so foreign... If something is happening in his brain that is preventing him from developing normally or healing from his stroke then I want to know so that we can figure it out, get him on medication or... well, I don't honestly know what they can do. I guess I worry that we will leave still not knowing anything, but I also worry that we will discover something we didn't want to know.. makes zero sense I realize.
Last night I was thinking about it all, taken back in time to a moment in the Sick Kids chapel when I was literally facing losing Josh, sitting there, just at the beginning of this journey I thought it would be a quick fix, I thought 'if he survives this, then he'll be okay'. I thought the same thing after the first few surgeries. It was after the second surgery that it began to dawn on me that this was a life long journey, and that our lives would always include Cardiac appointments. It's sobering. It's also taught me a lot about love, the love a parent has for a child, the commit that it means, the responsibility. I thought having a baby would be all snuggles and sweet smelling baby powder, cute clothes and giggles. I knew we would be sleepless for a bit, but I had no idea the real journey that parenting is about. I don't want to go back to Sick Kids ever again, that is the honest truth. I want to have two healthy kids whose biggest medical need is a broken limb from a stupid stunt; but I don't, and that is what has taught me the most in this lesson of the heart.
No matter what, no matter when. They need me and I will gather up every ounce of strength I have to be there, through all the yucky stuff, through the not so sweet smelling things, through the less than cute moments, through the terror filled nights. Loving these two boys has shown me how much God loves me, how much my parents love me. I was too selfish before kids to really understand that love, to fully get what it means to love without conditions, to be willing to die for the chance at making life better for someone.
Sometimes when it's dark and the house is quiet I just lie there and thank God that I am no longer the same person I was before these three came into my life, I don't even recognize that girl anymore and for that I am grateful. Sometimes its the pain in life that teaches you the most, that stretches you the most... I just wish it didn't have to be Josh's pain that brought me to this new place of understanding...
On a totally different note... Josh was selected to be this months patient profile for the Sick Kids Foundation... (follow the link below). If you happen to feel like clicking the donate button please consider designating the donations to the heart centre so it goes straight to them. (Please, this is not a pitch, there is no obligation, I am just super proud of him and only share this link so that you can see his story on their website).