You probably won’t remember much from this year because you are only five. But, for me this year will remain a vivid memory for years to come. It was a really hard year that was marked by a daunting number of hurdles for you. It was a year that made me cry and ache for you. It was a year that changed how I see education and redefined my definition of success and achievement. Perhaps more than anything, it was a year that ended with triumph.
Over the last nine months you were put on five different medications, which means you had four different detoxifications. With side effects ranging from anaphylaxis, personality alteration and even convulsions, this process was tortuous and I struggled with it probably more than anything else. I think it was the hardest part for you too. This process took away the little control you had over your body and in its place left confusion, fear, exhaustion and anxiety. I’m so sorry this happened to you. I’m sorry you had to go through this while in school. I’m sorry you had to go through this in front of your teachers and your peers. It made me anxious and scared and I wasn’t even the one going through it. It makes me weepy just thinking about how hard it must’ve been for you.
Every day you kept pushing through, forging ahead and trusting your parents. You always tried your best to do what we asked of you even when it wasn’t fair and felt impossible. Your persistence and your bravery allowed us the opportunity to finally find a medication that works for you. You allowed us to help you. You never quit believing that we were trying to do the very best we could for you. Thank you for that. It means more than you will ever know. I’m glad it was worth it and your pain is finally under control. It amazes me that you seem so unaffected…so unbothered by the whole experience.
This was also a year overwhelmed by medical crises and diagnostics. Multiple DNA tests meant numerous blood draws. Three rounds of internal bleeding and a folded bowel meant countless emergency room and hospital visits. Four surgeries and procedures made you an expert on the clear fluid diet. Through all the medical fear and uncertainty you were a trouper. It pains me that one little person has had to be brave so many times. It hurts my heart that you feel a burden and responsibility to be tough. So much so, that more than once this year you begged us to take your blood so they wouldn’t have to poke your little brother.
This was a year of mistakes for those in charge of you and your care. Your parents, teachers, and doctors all took turns feeling unsure how to proceed in our quest to help you. At times we all felt lost and confused about what to focus on and how to prioritize your needs. Sometimes trial and error was all we could do. Truthfully, conflicting definitions of words like success, definitive, and controlled were often to blame. What made the doctor happy did not always make me happy. Adaptations that made you thrive at home were not necessarily conducive to the school environment. It was months of the blind leading the blind.
One thing is certain though, your school, teachers, parents and doctors all wanted nothing but the best for you. Hard work, love and lots of teamwork ultimately resulted in plans and strategies that allowed you to thrive. I really have to give credit to your school. They worked insanely hard for you this year. They loved you and embraced you in a way I could never have imagined. They made sure you had every hug, help and resource you needed to be the best you that you could be. I’m beyond happy to say that you blossomed because of it.
The little boy who was physically unable to hold a pencil at the beginning of the year is now writing. It’s hard to believe that the little boy I see happily running to the car every morning for school, excited to see his friends, is the same little boy who was terrified to go to school just months earlier. You have found a confidence this year that makes me smile. You have made friendships with so many of your classmates that after school gatherings seem to materialize out of thin air. You no longer worry about being different and instead are happy that you are special. Over the course of the year your interest in dinosaurs became a full blown obsession. Your fear and aversion to using your hands has turned into a love of painting. Fear morphed into bravery. Apprehension became resolve. Phrases like, “I can do it,” and “I just need to practice,” emerged from, “I don’t know how,” and “I just can’t do it.”
I want you to know that you made me really proud even on the days that I was too stressed and worried to show it. You are compassionate, kind, happy and playful. You see the world differently than the other kids your age and that difference is what helps make you incredible. You connect to the world around you in a beautiful way. I feel honoured and blessed to have been a witness to your growth.
Truthfully, I’m kind of glad the school year is over. While I loved sending you off to a place that helped you grow so much, I missed you when you were at school. I missed your laughter and your hugs. My days felt incomplete without the constant inundation of dinosaur facts, songs, books and games. I know by the end of the summer I will probably be ready to have a break from all the dinosaurs in my life. But for now, I am just happy I’ll get to enjoy you every day. I can’t wait to see what fun adventures you take me on.
Please know that I love you and I am proud of you. Thank you for being exactly who you are and for your patience with me as I fumble through this whole parenting thing.