Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Tuesday, February 3, 2009

Updates, Updates - Part 2

I was going to talk about me or my oldest son, but lately, I have been so wrapped up with the situation around my youngest son, I decided to go with his updates next.

I am not really sure where I left off. There is a litany of disorders: Dysautonomia/POTS, Delayed Sleep Phase Syndrome, Moderate Obstructive Sleep Apnea, and Chronic Fatigue Syndrome. Now, add to that the podiatrist's belief that he has early degenerative bone disease (fancy way of saying arthritis) in his feet and ankles. He is only 12.

All of this adds up to one homebound child. No school, no sports, no friends over for long periods, and since he fainted after visiting a friend's house for only 3 hours on Saturday-waking up to not even remembering going to the friend's house, there seems there will be very little visiting out either.

With all of this, add: 1. the three medications (down to two as of today, since one was causing insomnia); 2. a supplement to safeguard the liver and another to lubricate those degenerating joints; 3. the physical therapy twice a week to keep his muscles going; 4. the special high salt diet; 5. the at least 2 liters of fluids every day; you would think that we would not want for anything from doctors or insurance companies.

And yet, we have been through 3 pediatricians, 4 neurologists, a cardiologist, a pulmonologist, an orthopedic specialist, a sleep specialist (she is still around), a developmental pediatrician (still hanging on), gastro doc (gone), and 3 behavorial counselors (all gone). Now add in the physical therapists and a podiatrist.

Then, last month, I received three denials. One was from Social Security. Yes, he has a disability, but it is not severe enough. Yeah, right. The second was from the insurance company that was positive giving him an electric wheelchair would suddenly result in injury, death and destruction. So, no, you can continue to push around a 200lb boy by yourself. And I have yet to hear the reason behind the denial of the orthotics for his feet.

You can imagine that I am steamed and deflated at the same time. This necessitates the dreaded appeal process.

The appeal process with its additional clinicals, special letters from doctors and 90 days of calling back and forth for feedback is a major drain. And, I was already slated to go through this, so we could drive to Virginia to see yet another specialist.

So, here on my plate is 4 appeal processes. Someone come and haul me away!

But, back to my son. He, on the other hand, had begun to adapt, and is finally showing signs that he will make the best of his sudden changes in life. Of this, I am proud. A year ago, I would have wondered whether we weren't going to need a brief stint in a mental ward. He had gone from a bright, sunny, almost athletic prodigy from birth until 7 to a zoned-out, lethargic, overweight depressive by 10, and by 12, a fainting CFS sufferer with the mind resembling what one counselor called early Alzheimer's. His emotions were so raw and scary that I feared for his sanity. A year of counseling got all of us to cope with what we still don't completely understand. We are all ready to do what we have to do, even though no two days seem to be the same.

He has a Home and Hospital tutor from the county that comes 3x a week for two hours at a time. I am certain that he is NOT on the same level as the other children but I don't remember my 7th grade World Cultures (it was called Social Studies back then!) either. He will understand some algebra, have read through a book of poetry and will master creating Powerpoint presentations. The fact that most of his memory is unstable every time he faints makes it more profound and miraculous every time he passes a test.

And... I shall embarrass him in cyberspace. He has an online little "girl" friend. Yes, puppy love comes to the Unique Family! You can't say her name without a smile coming to his face. "Finally," he gushes, "someone like me!"

My heart almost breaks each time he says it. I hold back the tears and say without a cracking voice, "Of course, you are wonderful. Who wouldn't like you?"

Then the mother kicks in. Will he ever be able to drive? Go on a date? Get married? Hold down a job? These are questions I may literally have to wait 10 years for answers to (80% of children with dysautonomia go into remission in their 20s).

Then I look at the stack of denials and instructions for appeals and remind myself of my most important job. Make sure he has what he needs to succeed now. One day at a time.

One more tidbit to this update.

As we were slowly returning to our car from P/T today, he lets me know that I should be proud that my "greatest" accomplishments were turning out fine. He was referring to himself and his brother. I balked for a minute. Ha! Will my children be my "greatest" accomplishments? How about my career and my writing and what I give back to the community?

"Nope," he said. "What could be greater than a human life able to stand on their own?"

I teared up again.

Nothing, my lovely son. Nothing.