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 Awesome
AWESOME Are We
WooHoo! Let's go 1p! Now let's
pretend I can still do a fabulous jump. lol
Beautiful Michelle...well said! We are our children's biggest fans! I like to think they are our greatest teachers! They teach us so much about life lessons such as gratitude, compassion, speaking our truth, forgiveness, charity, and most of all unconditional love. Our special children are angels on earth. We are truly blessed to be able to get a glimpse of heaven through their eyes. Some people can be very ignorant or just unhappy. They don't know how it feels to be truly loved. All you can do is to bless them and hope that one day they can find peace and love within themselves. Sending lots of love to you and Josh and many more blessings!
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