Tuesday, June 02, 2009

. . . and Then Some

It seems that lately this blog has been all about the "and Then Some" and not a whole lot about "Jack's Journey". I just don’t know what to write about when it comes to Jack. Every day is the same. I feel such guilt about it, but really don’t know what I should be doing. Gone are the days when I was the insanely intense, have to have a plan and a purpose, and the push, push, push Jack task master. All for what? Nothing changed, nothing got better and no progress was made. Nope, we’ve done nothing but go backwards over the last ten years. Mark and I have both noticed a bit of a decline in Jack lately. The light’s not quite as bright as it was.

I find myself being less Jack driven and more focused on my other kids and life outside the whole special needs arena. I don’t know if I’m looking for more balance in my life or if it’s more of a defense mechanism. I just don’t know. I do know that I’m tired. I’m tired of medical equipment, supplies, case managers, support coordinators, therapists, nurses, Apria, EOBs, and everyone else calling the shots. Over time you learn to pick your battles, but lately, I feel like surrendering completely. Yet, I can’t surrender. I have to stay in the game with Jack for as many innings as he has left.

As for “Jack’s Journey” …

Jack is staying the course. He is happy, he is healthy and he is so easy to please.

As for “and Then Some” . . . who else, but Eric.

Eric’s had a problem with getting off whatever video game he’s playing when we tell him “time’s up”. He’s got every excuse in the book as to why he can’t stop “right now”. Tired of listening to his oration when I tell him it’s time to stop, I decided it’s time to put something in writing that we can hold him to. Ergo the following contract was drafted by parents and signed by Eric:

You know what? It worked. When told that his contracted time was up, he stopped, turned off the game and didn’t give us any of his usual grief. I’ve no doubt that next time, he’ll have his own lawyer with him and we’ll find ourselves negotiating terms!

And finally, I’ll close (because it’s 2 am) with another Eric classic:

The other night Mark made lasagna for the dinner (ie: he heated up frozen lasagna). Being the picky eater that he is, when Mark set the plate of lasagna down in front of Eric, he responded with “I’d like to have a word with the chef please.”

Gotta love him!

I don't have any pictures of Hilary from graduation day because it was very chaotic when we arrived and when we left (she had a graduating class of 750+) and before she even got out of the graduation venue, she had her cap and gown off. Here are a few (lousy) pictures from inside Wells Fargo Arena at Arizona State University where her graduation was held (we were in the nose bleed section):

If you look closely, you'll see Hilary receiving her diploma in this picture.


Susan said...

Hugs Ann. Don't feel guilty. We all know how dedicated you are to Jack. Wanting a bit of a life outside the world of special needs is NOT a betrayal.

Sarah said...

I feel for you Ann. I think of how hard I try to make things better for Keturah, and imagine you doing the same for Jack back in the day. However, seeing who Jack is today, I whole heartedly support your choice to refocus your energies. You have come to accept that all the pushing in the world isn't going to help Jack get "better". You just have to love him. And by reshifting your focus, you've given something back to your other kids as well. Hugs!

worthy said...

Ann, you have always done your best for Jack and that is obvious in his smiling face on all the photos you post As long as he has love and happiness what more could he need? He has a wonderful family who clearly adore him and that's all that matters to him. don't beat yourself up.

Love the photos - Eric is so funny!