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Monday, August 20, 2012

The "W" Word

You are chugging along, enjoying your pregnancy, and then bam, you find out your kiddo will be born with spina bifida.  They give you a ton of information about what your child will be like (though really, it's more like a worse-case-scenario that doesn't end up describing your kiddo as much as they say it will), and then you hear the w-word... wheelchair.  For some reason, that word can be the hardest to hear, when really, it shouldn't be at all!  I think when people hear their child will be in a wheelchair, they start to think about all the things they think they won't do.  You start to envision your child sitting on the sidelines, watching all the other kids run and play.  The truth is, though, that a wheelchair should not put anyone on the sidelines.  Sports, marriage, children, driving, college, independent living; it's all possible, wheelchair or not. 

Many times new parents are told their children won't walk, but sometimes doctors are wrong.  No one can predict what your child will or will not do.  Here are a few pictures of children and adults who were never supposed to walk...

















Lots of amazing adults and children use wheelchairs.  A wheelchair is nothing more than a mode of transportation.  It doesn't mean the end of a life, it doesn't mean sitting out during life, and it doesn't change anything about who a person is or what a person is capable of.  Yes, it may mean doing things differently, but a wheelchair doesn't have to slow anyone down.







Here are a few people rocking their chairs...









Then, of course, there will be those like Madi who do a little bit of both...





... and that's ok. 

If you are a new parent and you have been told your child will be in a wheelchair, I am here to say, it's ok.  A wheelchair gives a person freedom.  You child will not be any less perfect or amazing.  It does mean, though, that they will be pretty darn fast ;).

“Being disabled should not mean being disqualified from having access to every aspect of life.
-- Emma Thompson








8 comments:

Jessica said...

Great post!! It's funny, Gage was sitting in my lap when I clicked on the link to your blog. Before I even read what the entry was about, he commented on the picture at the top of your page and commented "Wow! The beach!" I asked him if he knew what the thing was on the beach, and he said "a wheel thingy." I went on to tell him it was a wheelchair, and help him name the people we know that use wheelchairs. I asked "why would somebody use a wheelchair?" and he said "oh! It has the Yes/No thing." One friend he knows uses pictures on her tray for communication, and that's what he latched onto. Anyway, I was able to explain it to him. It may be that he chooses to use a chair someday, and I am so glad we know kids with chairs and that it is not seen as unusual to him.

Andy and Kiara said...

I love these posts, Jamie. I hope they encourage many new parents of little ones with S.B.!

The World of Vineet said...

I just LOVE this post and ALL that you have written here. Its like what I would like to write over and over again. Why should a person on a wheelchair be limited? All it requires is a very very small amount of adjustments on our(non-wheelchaired)part, and it would make a HUGE difference in their lives..

Barbara Blackwell said...

My sister has SB. She is the most popular auntie in the family too! Getting to ride on Katie's lap while she zooms the little ones around the house or when they are a bit bigger, letting them take off in it themselves for a ride to the mail box is "just the best"!!!!! Oh and when they discover the spare sports wheelchair in the garage....!!

Holly said...

And sometimes they are correct...

My son's doctors said that Noah's spinal defect is at the top of the lumbar spine (L1) and they were correct. My son has bilateral clubbed feet, neurogenic bladder, dislocated hips and uses a wheelchair to get around

Jamie said...

Yes sometimes they are, but the point of this post is it's ok either way!

Leah said...

Well said!!

I was told the worst case scenarios by my diagnosing doctor at a routine scan. They are woefully inaccurate. My son does not have any cognitive disability but even if he did it would probably be on the milder end of cognitive impairments.

Anonymous said...

Well said Jamie!!

Leah