Brutal Honesty about our Future

Just before Christmas I watched a movie called Lorenzo's Oil. I had heard of it through my special needs mommy group, but I wasn't prepared for how sad it would make me. See, in the movie, they find out that their little boy, Lorenzo, has a genetic condition that will lead to the shut down of his entire body, and eventually, his death. So, they work tirelessly to figure out what is going on with his body and how to reverse the effects. It's complicated, and you can watch it (I found it on instant Netflix) if you want to, but the part about them finding a cure isn't what hit me, it was the part about watching your child die slowly before your eyes.

It made me think of a friend I made recently. She has a son with Batten's disease, which isn't the same thing as Lorenzo, but basically has the same result. Only my friend's son has a rare form that means he will pass away before he's 5. He is a month older than Sadie and they've just started hospice care this last week. I had no idea what she was in for until I watched that movie. The reality of losing your child didn't make sense to me before, but now I realize that it has to be the worse thing ever in the world to experience. And she's not just losing her child...she's watching him die slowly, little by little, while she watches and prays for just a little more time.

It's hard for me to comprehend having a child who has no future. All we think about in our house is of the day when Sadie will be able to sit, eat, talk, walk, etc. We think about our future needs as far as a wheelchair lift on our van, taking Sadie to school, or if potty training is EVER in our future. But my friend, her future is without a child, without her child.

And dare I say that I'm a little bit jealous?

Can I be that honest here? Will you all judge me? Probably not, because I know if you have a special needs child, you've considered the possibility of how much easier it'd be if your child, the one that you love so much, the one that you pour your entire life and all your energy into, just wasn't there anymore. And I know that my friend would disagree with me, because I know that she would give anything to get to keep her little boy forever, even if he has severe disabilities. But everybody has their own battle to face, and when you're in the midst, the other side always looks better, even if it's really more bleak.

The thing is, when I think of our future, I don't only see all the things Sadie will learn to do and grow up to be, I also see that family vacations will never be normal. I see that our family will never be able to go hiking or camping. I see people staring at us, feeling sorry for us. I see having to deal with puberty (really scary). And I see spending a lot of money and a lot of time on services and equipment. It's all a little bit overwhelming, so I try not to think about it too often, actually.

But can you blame me for thinking things might just be a little easier if she was gone and we were no longer a special needs family?

Don't get me wrong, I love Sadie and she is my whole life. I love to tell people about her and proudly exclaim how much of a miracle she is. But, I know that our family is not what we envisioned when we first got married and decided to have children. And I know that my friend never could have imagined she'd be dealing with watching her little boy die.

So I just hope, for both our sakes (and everyone else's really) that we can continue to see the bright side, focus on the positive, and mourn and cry freely when we need to.