My Kind of Vacation

If you are the parent or other family member of someone with a disability do you ever get tired of the disability? Do you get tired of the explaining, the questions, the stares, the changes you must make in your life? Do you feel like you work as hard as you can and yet you still cannot make enough of a positive difference for your loved one? Do you just want a vacation from disability?

I read this post today about a Mom who is right there. And this one from a single dad with a disabled son and daughter. And I understand, to a degree.

I have found from reading many blogs from parents of children who are severely disabled that those parents experience so many different emotions than I do based merely on the fact that they gave birth to their child rather than like me, chose their severely disabled child(ren). Sure, we share some of the same emotions – sadness, hope, despair – but there is one big emotion that we don’t share – guilt.

With Ashley, I was not the one who drank to excess during her gestation. I was not the one who was bulimic and chose not to get prenatal care. I wasn’t the one who smoked and did drugs. I am not the one responsible for the effects all those things had on my sweet Ashley.

But I am also not the parent who did everything correctly while pregnant only still to have a child with severe disabilities. That, I believe, is a source of even greater guilt for some parents.

So I think I can understand the words of parents who had no choice in their children’s disabilities. Their words are difficult for me to read, and I think that is because I did have a choice. While I appreciate the raw emotions and the gut wrenching honesty of those parents, I find that it hurts my heart to read their words too often. If I feel guilt, it’s because I walk away from those brutal and honest words, and the pain that is shared. Guilty because I know listening and reading doesn’t do me any good. I will stop by occasionally because I need their perspective, but not often enough that their visions darken mine.

Perhaps that means I am not a very nice person, but I am a parent to children with severe disabilities, children I CHOSE. And my life is richer beyond belief because of those choices.

I don’t want a vacation from disability – I want a vacation with my children without other people handicapping them and our family.

Wish #1 - Fail, Wish #2 - We'll see

I told you last May that Ronnie had been approved for a wish from the Make A Wish Foundation. It took a while to get him to understand that this was all for him – something special. And, he finally settled on a wish – to meet Adam Dunn, the first baseman for the Washington Nationals baseball team.

The Make A Wish folks got working on that but their efforts were stalled because of Ronnie’s surgery and subsequent recuperation. And, baseball season is drawing to a close, and Mr. Dunn may or may not stay with the Nationals.

Since this coming Monday is the last game for the Nationals, and we hadn’t heard from Make A Wish, we assumed they were not able to work things out. But then the call came – last night about 5pm while I was standing in the checkout line at Kroger. The arrangements were made and we would be traveling this weekend for a meet and greet on Monday or Tuesday.

Sounds great, eh? Well, except for one big thing, it did sound perfect.

The call came at 5pm on Wednesday, and Make a Wish wanted us to travel in two days for a stay through the first of next week. I’m an extremely organized person but even with that there is just no way I can make arrangements for the rest of family in two days.

Ronnie has a small medical procedure scheduled for Monday. Ashley has an appointment with her neurosurgeon on Tuesday. Ronnie is supposed to attend his girlfriend’s birthday party on Saturday. I have no arrangements for someone to stay with Ashley while the boys and I travel. Chip can’t miss his college classes, and I’m not wild about taking Ronnie and Corey out of school so soon after the start of the semester.

This wish is not going to work.

The Make A Wish folks seemed a little miffed with me. I told them that if they could have just told me 2-3 days earlier that it was a possibility, I might have been able to pull things together. But 48 hours – I just couldn’t do it.

So, I talked to Ronnie, and he has adjusted his wish. Now we’ll wait and see if the Make A Wish folks aren’t so annoyed that they give up on us.

Wish Upon A Star

I contacted our local Make A Wish organization to see if Ronnie would qualify for a wish. He does, and the Make A Wish folks are starting to process all the paperwork. I'm so excited for Ronnie, but I'm also running into a wall. I can't seem to make him understand that wishes can be big!

I guess coming from a past life of not having much - living in a very disruptive home with his mother - and then in several foster homes - wishes don't come easily for him. He's probably wished for things in the past and those wishes never came true.

So now if I ask what he would wish for, he would probably say chicken nuggets.

I've shown him the website for Disney World. I've talked to him about other trips. We've reviewed the wishes that other children have made. But he just doesn't seem to grasp the idea. I have some ideas about things he would really like - being a superhero for a day, being a character in a comic book or a cartoon, having a go-kart track in the backyard - but he just looks at me like I am crazy.

I've shared these concerns with the Make A Wish staff, and they assure me that they have folks that will talk to Ronnie and help him figure out what his wish is. So I'm going to stop fretting about it, and just let them do their job.

But I wonder, have others of you faced a similar situation, and if so, what did you do to help your child dream and wish for something special?