Thursday, September 1, 2016
Our sweet Nicholas (Nick) starts Kindergarten. Kindergarten. We're nervous and excited but it's nothing like what a typical parent experiences when their child goes off to Kindergarten. This is different.
Nick is beating Hunter Syndrome. He's beating it. We can't even express how emotional this is for us. Nick is starting in a classroom without a dedicated aid and special education services. His school has those capabilities but he doesn't need them at this point. Nick is going to be in a classroom with kids he's grown up with, and he's going to learn and grow right alongside those kids. We can't even tell you how inspiring, how moving, how amazing this is...it's like a dream come true. This...this is what brings tears not fear of change, not fear he's growing up too fast, or no one will sit with him on the bus, but this accomplishment brings tears. It's very emotional.
Nick has earned this moment. It hasn't been easy. He's been through a lot of pain, procedures, worry, treatments, appointments, hundreds of needle sticks, loads of scary things and he has made this moment happen. He has. He has earned every minute of getting a desk, sitting on the carpet, being star of the week, and making friends. This is Nick's moment.
Some professionals (very few but some) will tell you, this is not the right thing to do. Nick will need a dedicated classroom aid, he will need special services, he will have behavioral issues. Some will read from medical publications and Hunter Syndrome brochures verbatim and tell us and you - he will require and need things that a typical kid doesn't - and we will tell you he doesn't along with other professionals who have worked closely with him. This can be a difficult thing when "norms" are developed, and a community of professionals is learning right along with everyone else. Some young Hunter Syndrome patients are emerging who have started treatment early, have been fortunate to be involved in clinical trials and studies, and are experiencing a completely different journey. Innovation is really enabling individualization of this disease, and the best of professionals understand and accept this fact.
Thank you to everyone who has helped him! His nurses, doctors, family, friends, caregivers,nannies, teachers at daycare, mentors, coaches, neighbors, etc. You have helped form this awesome boy!
If you looked at Nick right now, you wouldn't even know he has Hunter Syndrome unless you saw the scars he bares from the ports implanted in his body.
We know that this disease is a monster, and we'll always need to pay attention and ensure Nick is getting what he needs. This will never, ever be behind us. There's no cure, and there is no treatment that's a one time fix. In our own home, we have a reminder of the differences children with Hunter Syndrome can experience as Alex suffers from it as well. We cherish this moment now, and hold on to its precious significance because we know it could change in a heartbeat.
If things change, we won't view this as a set back. We'll just do what's right, and necessary.
Nick will tell you he is scared of a new classroom, that the bus is scary and he's most excited about making new friends and his new backpack. Nick is experiencing what any kid would experience starting kindergarten but we aren't - we are experiencing something more, something amazing.
We love you Nick. Congratulations on this amazing accomplishment! You are our inspiration, the reason why we carry on with courage. Enjoy your first day buddy!
With love and admiration,
The Cherrstrom Family