I
have been struggling trying to decide what my first blog should be about. I finally
decided it should be about my biggest and most important job, raising Chandlor!
I think a lot of people have misconceptions about my life…some think that it is
unimaginably hard…while others think it is a piece of cake. Truth is…it is neither
of these things. Taking care of a child with special needs is without a doubt
the hardest thing I have ever done, but it is also the most rewarding experience
of my life!
I
was 18 weeks pregnant when a Level II Ultrasound confirmed that Chandlor had Spina
Bifida. That day I thought my world was ending…it didn’t take me long to
realize that it was only just beginning! I quickly learned that I was
Chandlor’s advocate. The doctors needed my permission for any
surgery/medicine/test they would perform or prescribe from that day until he
was 18. For a girl whose grandma still did her laundry…this looked like a huge
responsibility! I caught on though and became comfortable with it a lot sooner
than I anticipated I would.
In
the past two years Chandlor has had three surgeries (the first when he was 22
hours old), more Cat Scans X-rays and Ultrasounds than I can count, been
prescribed numerous medicines, learned how to crawl, learned how to sit,
learned how to talk, learned how to stand with the assistance of braces,
learned how to maneuver a wheel chair, and stole hundreds of hearts…all with a
smile on his ornery face! Despite all of this he has the same attitude,
demeanor, determination, and imagination as any other two year old. He cries
when he is mad, he smiles when he is getting his way, and believe it or
not…sleeps when he is tired. He is so
much more “normal” (I HATE THIS WORD) than people give him credit for. He is
awesome.
I
have come to the conclusion that God puts people on this Earth like Chandlor for
a reason..to keep us humble and to make sure we don’t take simple things for
granted. I have also come to the
conclusion that God gives special needs children to people who need them and to
people who will love them and take care of them. I am so unbelievably blessed
to have been chosen to be Chandlor’s mom. He teaches me something new everyday.
I
would be lying if I said I wasn’t worried about the next 5 or even 10 years. Chandlor
is 2 and doesn’t yet realize that he is different from others. I have come to
terms with Chandlor having Spina Bifida and embraced it as a part of our lives,
I can only hope and pray that he will do the same. I try and keep things as
“normal” (there’s that word again) as possible. He plays in dirt, gets bumps
and bruises, shares his toys, and gets disciplined…often. So I’m hoping there
will be a smooth transition of understanding.
All
that I will ever ask of anyone is that they don’t feel sorry for him and that
they learn from his disability. I promise you that anything God has taken away
from Chandlor He has replaced with something even better. I refuse to raise
Chandlor in a way that would make him think the world owes him a favor. When he
is bad..he gets in trouble, when he is good…he gets rewarded. Tough love sucks,
but is necessary. And always always be thankful for your health and mobility.
All
in all this life we lead isn’t an easy one, but it is worth it! We have had our
ups and downs…and will continue this same pattern I’m sure, but doesn’t
everyone? How would we appreciate the good times without the bad?
For
more information about Spina Bifida follow this link http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8095307/k.4C3B/FAQs_About_Spina_Bifida.htm
Thanks
for reading my first blog :D
