Josh was wearing a 1p36 deletion syndrome shirt the other day and a nurse asked me why in the world would I advertise his disability.
I understood that she meant no disrespect. She looks at a child with a disability and sees something tragic. She doesn't realize that when I look at Josh I see Josh not a disability.
My first response naturally is to bring support and awareness to his disability. I started to think about that answer. Well duh, I obviously want to bring awareness, but 1p is so much more to us.
1p36 deletion syndrome means family. It means support and comfort. 1p represents strength, accomplishment, miracles, beauty, inspiration, and so much more. How in the world do you explain that to someone who doesn't understand this amazing "special needs" world?
I looked at her and explained, well, it is kind of like rooting for your favorite sports team. You are proud to represent your team by wearing their clothing, watching them on television, going to the games, and cheering with thousands more fans just like you. You love your team. You will support them through the good and bad seasons. Well, that is kind of like our 1p family. We are a big team and we love and support one another."
I am not sure I cleared it up for her, but I thought it was a good analogy.
I don't know what I would do without the support of my "special" family. Josh recently had spinal surgery, (for those who don't know) the outpouring of love I received from our group was amazing. We received well wishes and support by friends and family, but nothing like our 1p group. They understand. The funny thing was I received calls and messages from concerned 1p parents, because of my fb posts. Even though I tried to stay positive many of my 1p parents saw straight through that. They recognized that I was barely holding on and they were there to lift me up.
I never wish for anyone to have to experience a disability. However.....if you do. Embrace it. Every day I get to personally witness a miracle. I was told Josh would never be aware of his surroundings. Josh's last test at therapy showed that he understands what a 6 to 8 year old child understands. That was last year so in some areas he was a year off. That in itself is a miracle. I also get to hear and see miracles from other special needs families. It may not be what we signed up for, but I am so glad to know these amazing people. I feel so blessed to be able to see people with disabilities so much clearer now.
As a former cheerleader I will end in a cheer.
A - W - E - S - O - M - E
AWESOME Are We
WooHoo! Let's go 1p! Now let's pretend I can still do a fabulous jump. lol