How I Really Feel

Here is where it gets real, folks.  I usually try to be very positive and share the good stuff.  Most of the time I actually do feel that things are going really well, but at the same time I cannot ignore the fact that Spina Bifida is a huge, giant, monstrous pain in the a$$.  

There are days, when it's hard.  I can't stand that Leah's mobility is limited to wheels.  I wish she could run around with the neighbor girls down the street.  I wish she was able to get out of the stroller and walk down the sidewalk.  I wish we didn't have to think and plan out all the different pieces of equipment we'll need when we go anywhere.  I wish she could run into her room to get the stuffed animal she wants.  It's hard watching her watch from the sidelines.  Even when she's in her wheelchair or walking, she's slower than everyone else.  It is a challenge trying to pay for something when I have her on my hip while I balance my wallet and sign the credit card receipt.  Getting her out of a swimming pool or lake more often than not means leaves me with a huge wet spot on my clothes and soaked shoes.  We end up being an extension of her and she relies on us a lot for her mobility.  I am comfortable with doing that for her, most of the time, but there will come a time when she doesn't want that anymore.

It wasn't that big of a deal when she was first born, or even last year because she was still content with being carried around.  Now she wants to do everything herself... which I love!!  And it makes me so darn frustrated.  The other day we went running errands, and she didn't want to be stuck in the shopping cart.  But it was just me and I didn't have enough hands to direct her wheelchair and carry 2 boxes of diapers, so she was confined to the cart.

My head knows that life in wheels can still be very fulfilling.  One doesn't need functioning legs to get into Harvard.  All these mobility challenges can be managed... and most of the time I think we do a pretty good job of it.  We try to give her as much mobility as we can, and allow her the freedom to be as independent as is possible for a 3-year old.  But deep down in my heart I am scared and sad to think that she won't be treated right just because of her wheelchair.  That she will be perceived as less than she is because her legs don't work, even though the rest of her works incredibly well.  Spend 5 minutes with her and even at her most challenging, she is still a kind, sweet and sensitive girl.  She has an inquisitive mind, she is outgoing and wants to know everyone's name.  My little 3-year old plays the role of a campaigning politician extremely well - saying hello, kissing babies, waving - but the best part is that it is truly genuine.  How many people are going to miss out on that because all they see are wheels?  How long until she starts seeing the differences that others see, before she starts believing she's less of a person, and before that sparkle starts to fade?  I know I am biased because I'm her mom... but I assure you that she is something special.  She has a gift, there is a little gem sleeping down the hall, and I can only hope and pray that she is treated properly by others so that she continues to shine.  She can light up an entire room today.  Will she still be able to do that 10, 15, 20 years from now? 


As she grows from 3 to 4 and starts to become more aware of herself and others around her, I know she will start to see the differences.  She already knows that the other kids at school use the potty while she is still in diapers.  It hasn't seemed to bother her yet.  I am more afraid of those questions - why am I different? - than I am of having "the talk" with her (you know, the one about the birds and the bees).  I just hope I can do her justice when that time comes.  And hope that every day I can keep that spark alive.  Did I mention that she's something special.. and not because she's "special".  There is truly magic at work in that little 25-lb body of hers.