Ashley's Story

She will leave fingerprints all over your heart


One of THOSE days

Its just of those days. Nothing really different happened to cause the rush of thoughts and emotions and opinion to rise up. They just surfaced today and I'm fighting back the tears as I process it all...again.

I've gone back and forth with myself as to if I should write it out or not. If for no other reason than to know that I am not alone in my thoughts. Or maybe just to get it out so that I don't feel as though its drowning me. Perhaps there are other parents out there just like me who are tired, weary, and basically ready to just accept what it is and move on with life.

I want to make perfectly clear this post is not directed at ANY one. Not at any specific discipline. I have a feeling some will take offense and yet none is directed or intended. I'm just venting. Because I need to.

Its been more years than I can count and perhaps there has never been an occasion as to which I have read any other word written in regards to Ashley Kate's prognosis other than POOR. Needless to say it stings every single time I read it. Every single time. I have been defiant at times in regards to such opinion. I have been accepting at times. I have been numb. I have been defeated. I have risen up and declared to fight.

Now I'm just at this place..."ok, thats what you have to say about her... so I'm determined to allow her to enjoy life... Period."

But...its not that easy. When you parent a child with disabilities you are automatically thrown into a whole new world. Not just the world of learning to live with those disabilities but a world where you are expected...forced...coerced...told...that she must have therapy. There I said it. This post is about therapy. In all forms.

I'm tired. Tired of all of it. Each has its place and I'm sure each discipline celebrates huge successes in some cases but in my experiences we do the same things over and over again, year after year, some with familiar professionals, others with new ones. Always searching for the answers, or progress, or "normalcy" to find out that after 6 years we are basically in the same place. I have spent years with rigid schedule and then the last year without a schedule at all. My opinion? Because its my journal and an accurate and honest account of Ashley Kate's life....not much has changed. Today I wonder if I'm the only parent out there with this experience? Am I the only one discouraged? Am I the only one who wants to look at the whole world who is telling me "she has to be in therapy" and say to them " Ummmm, NO. NO Thanks. We choose NOT to put her in therapy." Am I the only parent who feels as though this is not even an option in the eyes of the rest of the world?

I choose to allow Ash to just be Ash. She is beautiful. She is very intelligent. She is happy. What more can I honestly expect her to be. She will NEVER be normal. Its not going to happen. I could put her in therapy every waking hour of every single day of her life and she's not going to achieve that. Guess what? ITS OK.

This is what I believe to be true about Ashley Kate. As her mother and the person who spends every single day of her life with her its my opinion.

Ashley could walk. I think she could. The issue being...Ashley has no desire to walk. No want to. No understanding of why she should. So there. Until someone can give that desire to her its not going to happen. If it does I'm ok with it...if it doesn't I'm ok with that too. She is HAPPY. She is full of JOY. She is CONTENT. She is the purest form of all of these things that I have ever encountered.

Ashley doesn't talk. I really don't believe she ever will. She doesn't have the desire to do so and I have yet to find any "magic" in therapies that will give her that desire. You can sit in front of her all day long for the rest of her life and play with her and if she chooses not to ever speak then she chooses not to speak. As much as it breaks my heart not to hear her voice in my home this is the whole of it.

Ashley can't eat. Feeding therapy has never been successful and will never be without a bowel. It is what it is. Will she ever get another bowel and another chance to try and learn? I truly have no idea.

Just last week a therapist sat in our play room and said..."she should have some occupational therapy too. She would really benefit from it." I just sat there without a word to say. Yes, its fun. Yes, she enjoys it. Yes, she should probably have it. She's had it off an on for 6 years and the results are always the same. She stacks blocks, and holds crayons, and writes, and does puzzles when she feels like it. Not when she's being watched. Thats all I could think of. She has never done what they needed her to do at the time they needed her to do it. So...she fails. Every single time. Same result. With every therapist that has ever worked with her.

I guess what I'm saying is, as her mom I know there is a need for therapy and at the same time I don't see the need for therapy. Wow...its really out there now.

Today I'm discouraged. Discouraged by a world full of "professionals" who feel the need to tell me how wrong she is and that she needs to be corrected when I've come to terms with exactly who she is and I have accepted. She is in a wheel chair. She is fully TPN dependant. She can't talk. She does not eat. She is in diapers. She is tied to a drain bag 24 hours a day connected to a g- tube. Guess what? She is AMAZING and blessed and so, so, so happy.

Now its time to get her ready for therapy. Go figure.


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