Thursday, December 1, 2011

GBE2 Challenge-Bucket List

"Ouch," our older son said to me this morning. "Mamamommy, I want upstairs please." When I entered the room, he placed my hand on his throat and said over and over and over, "Hot."

"Hot" is a word he uses to describe pain. And, when pain strikes, he either cries inconsolably, sits with it and says nothing or he tells me it is hot. Hot, he says. Hot. Hot, hot, hot, hot, hot, hot, hot, hot. For good measure, just to make sure I get it, he'll keep putting my hand to the spot every time he says that word. The whole act makes my eye twitch.

I understand that he is processing it. But, as his mom, I just want to fix it. Or, at the very least, I want him to have the peace of speedy processing so that he could move on. It's no fun to be stuck in the land of confusion.

As I went about my morning work of cooking and packing a zillion lunch boxes for my food intolerant kids, I couldn't help but let my mind wander to just how much in a day's time this child is in a state of confusion. How terrible it is to have thoughts--fears---and not be able to express them. As much as I joke about how this life has fried my brain, there is no mistaking the fact that I am this child's lifeline.

This week my favorite group of bloggers has challenged each other to write on the topic of a "Bucket List." I feel very strongly that those two words would stop special needs parents dead in their tracks.

Friends,I am forty-one years old, and all I know about the future is what just about every parent in my shoes has said at one time or another, and that is that I simply can't die. Ever. If I did, who is going to be there for my kids--most importantly our older and least independent child? Who else can decipher his words? His medicines, his health, his diet, lack of danger awareness...

...who will take my place?

I don't often dwell on such questions. They make me cry.

What is on my Bucket List? Well, it sure isn't a wild trip to Vegas.

Procuring guardianship. Residential living. Establishing a sense of worth and well being. A purpose in life. Security.


I know. It's far from finding inner wisdom or running a first marathon or traveling around the world. I can't help it. The thought of one of my children wandering this Earth alone or in trouble--possibly homeless, abandoned or abused. Misunderstood...well, it makes me physically ill.

A year or so ago, I read in a popular magazine the national plea of a single mother to autism, a woman in her golden years who was unable to care for her adult son. She was asking anyone, any kind person in this country up for the task, to take her son and care for him. How had she reached that stage?

I can easily see it.

A child is in the school system until the age of 21. After that point, usually, parents are still able to provide care in the home for the child while some sort of life is established for that individual. One year turns into five. Routines are established. Waiting lists for group homes are inpenetrable. Five years turn into ten...

I felt for the mom in that article. I could be her. She is in all of us parents in the special needs community. She was realizing our fear.

In our day-to-day lives, I kiss away the pain. And, when the touch of a kiss is not tolerated, I hang in the periphery so that it is always known that mom is making sure everything is okay.

My Bucket List? It's to make sure that the feeling of well being I provide for them today is not swept out from underneath their feet when I am no longer able to be with them.


  1. You are right Amy, every special needs parent must feel exactly this way. I wish I had the magic pill for you and I wish there was a clear cut path you could count on for his future, but alas, there is no magic pill or path. There is, however, hope that there will be the one person when needed and my Christmas wish for you is that you find that person long before you need to find him or her or them.

  2. amy, what a very heartfelt post.... thanks for sharing in a wonderfully honest voice...

  3. I have no words of wisdom, no answers, no ideas. I've seen elderly mothers with middle aged special needs children and the question you just posed always comes into my mind. What will happen when she's no longer able to do it?

    Because I have no wisdom, answers or ideas, I give them the only thing I do have. I say prayers for them, right then, for the parent and for the child. I ask for peace for the mother and loving support for her child. I pray the same for you and yours. ♥

  4. I can tell you are a wonderful person who thinks of others. Many years ago, I worked at a respite care facility in St. Louis. Burt's parents willed their house and money to United Cerebral Palsy with the condition that their handicapped child could live there and be taken care of for the rest of his life. I haven't been in contact with Burt, but he was about your age the last time I saw him (and I thought he was sooo old). Now I realize how young 41 really is!


  5. I'm with the Word Nerd. I too will be asking God to both comfort you and direct your steps. "Life is hard. God is good."

  6. finish the will fund AND birth light in many a soul :0) God will take care of all the worries....

    ah yes..another chapter DONE

    sniff...must be coming down with something...achem

  7. Such a heart-wrenching post. You are such a loving and devoted parent. My heart goes out to you.

  8. You don't need a bucket list, you just need to live every day to the fullest.

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