Friday, September 23, 2011


Sometimes I find myself living vicariously through facebook. Day in and day out I deal with puke, screaming, non-napping, rocking, more puke, worrying about what hurts, sleep deprivation, work, money, more puke, doctors, more doctors, therapies, and stressful car rides. Sometimes I just want my life and my kid to be normal!!!

So, I get on facebook and I look through the pictures of all my friends with beautiful happy children. I see pictures of them at the pumpkin patch, at the pool, eating dinner in a high chair, and falling asleep in the car. And I imagine myself with a kid like that. And I think about what it would be like to be this person, someone who's biggest complaint is that their child only will take a 1 hour nap. What would that be like?!

I see these people so happy, enjoying life. They don't have to worry about g-tubes and adequate nutrition/hydration (at least the way I do) or wheelchair clinics or what she could be screaming about this time. And I wonder if they realize how good they have it.

They look forward to potty training and kindergarten and play dates and all this is normal for them. It should be normal for them. They are running the race which is life, and hoping that they finish well.

But our race is part of the special olympics, and it's quite a bit harder for us to get to the finish line.

And instead of looking forward to walking and talking and eating with a fork, we're just hoping sometimes that we make it through the day. And we need a lot more cheering in order to go a lot shorter distance.

Sometimes it's hard to realize that I live in a very different world than most people, because Sadie has special needs. Even amongst other parents of children with special needs I can feel isolated because every kid is so different. Sometimes I feel like I live on an island, one that people can't really visit, they can only reach me by Skype. And sometimes I like being alone on this island, it's peaceful and nobody bothers me. But sometimes I just want a friend. Sometimes I want someone to give me a hug or hold my hand. And you can't do that through Skype.

So, I go to facebook and I live vicariously through my friends and I lose myself in some fantasy where my baby was born and everything went according to plan and she was beautiful and happy and crawled and walked and starting talking all on time like she was supposed to. And I imagine having another and another and going on vacations together when they got older and being surrounded by such a wonderful family for the rest of my they will.

Then I realize that if we make it through today, that deserves an applause from the crowd that is cheering us on, and the next day we might need a standing ovation from the crowd just to get us to lunch time. And that no matter how many pictures I look at or how hard I wish, it's always going to be like this for us.

Good thing there's always facebook.


  1. I will cheer you guys on! Isolating this world of special needs children is an understatement. And yep we are all so very different it is what makes us who we are.

    Stay strong. Remember we find joy in the simple pleasures now that others take for granted.

  2. I know it must be hard...I can only imagine, but feel blessed that you have your child because for those of us fighting so hard for a child and losing the battle, we'd take a Sadie over no child any day.

  3. Wow, you express my sentiments so very well, and I thank God that you post your thoughts so that I know that I am not alone.