Yesterday I nominated Lyra for Make-a-Wish. And it was hard.

It’s not that I wouldn’t love to have an amazing experience set up for Lyra. It’s about the implications of her being eligible. That is what I find the hardest. But Lyra is eligible. As much as I wish that wasn’t true, that is a simple fact of her complicated life. Honestly, I try to ignore it as much as I can. Yes, we have all the doctors appointments, scans, blood draws, emails with nurses, pharmacy trips, and OT/PT/SLT appointments. We have the special equipment, the medical supplies, and the extra cloths we can’t leave home without. But I often just tune it all out and pretend like every parent has to worry about things like this. Every kid has their challenges. Our life just looks a little bit different… Right?…..

But I know it doesn’t. I know my family life looks a lot different. I see other families celebrate what their 8 year olds are doing, while I am just amazed at how close Lyra is to being able to stand up from the ground without holding someone’s hand. I see kids her age going off to overnight camps, while I am restocking her diaper drawer and making sure her changing table is clean. I hear about siblings bickering, while my son says, “I wish Lyra could talk to me.” Life for us is very different.

So, why not take the opportunity to do something special? Life is hard for Lyra. While she runs through her days with a smile, evil laugh, and wicked sense of humor, that doesn’t mean it isn’t hard for her. So, why not try to set up something for her that is happy, and easy, and a break from our reality? That’s why I applied. Celebrating her is more important than how uncomfortable the reality is for me.

So now we wait and see if she is selected for a wish. Wish her luck.