Wow! It still sometimes hits me like a train that you had a stroke. Some memories of that day have faded. Most have not. Just thinking about the moment the doctor said “He’s had a stroke and is obviously a very sick little boy” still brings tears to my eyes and makes me nauseous. The memory of walking into the PICU and seeing you hooked up to a ventilator still makes my knees shake. Hearing the doctors say they didn’t know if you would live and that we needed to be prepared to make final preparations for you was not something I could even wrap my mind around. We were told we’d know if you’d make it in 72 hours. After that they would be able to tell how bad the damage was.
Your little body was so puffy from the dialysis not working that you almost weren’t recognizable. I knew you could hear me though so I sat and talked to you. I held your hand and told you that if you wanted to you could go and we would be okay but if you wanted to stay we would fight together to give you the best life we could.You chose to stay and every day no matter how hard a day it is I give thanks for that decision!
You are the strongest spirit I know. You are stubborn and ornery and have a desire to be more than a little naughty at times but I love you even more for it! Your will to live and have fun has never wavered. I doubt myself everyday and think to myself that I am tired of fighting this battle called recovery but then I look at you and I know I’ll never give up trying to make your world a better place for you. Days and weeks like this past one where you have spent almost every waking moment either throwing up or screaming in pain from muscle spasms break my heart but then evenings like tonight when you are calm and laughing at the t.v. make up for it. Your smile and your silent belly laugh melt my heart every time.
We will continue to try every new medication that comes our way to make you more comfortable. Today we picked up a new seizure medication from the pharmacy. This morning was the longest seizure I’ve seen you have. I hate watching you stop breathing and turn blue while I count the seconds until you start again. Tomorrow we will start the process of weaning you off your old seizure med while starting the new one. It’s a dance we’ve danced many times in 7 years. We also got the go ahead to try a different type of muscle relaxer. This one works on your back instead of all your muscles. The rope of muscles down your back pulling you over makes my back ache for you. I’m guessing breathing is more important at this point than the muscle pain so we’ll do that change first before trying the second one. To many med changes at once gets confusing.
Speaking of dancing, I wish you were still small enough to two step with me. Your dad won’t dance but you used to love it. No music though just dancing in the kitchen to the beat of your own song. I hope that this next year of recovery brings you amazing progress but if we continue to baby step our way through it, it will be just perfect. I love you my brave little man!