A Year in a Nutshell

I thought I wanted to slowly go through this last year, but I find that my mind REALLY doesn't want to remember it.

Between the ignorant and cold doctors, the many fruitless visits to emergency rooms, the insomnia that ensued because I was just so afraid to leave him alone, it is too difficult to look back and write it all down. Probably, I will make mention of an old event here and there as I write further, but to drag it all out and relive it, is so painful. Let's just do the abridged version.

My son went from a rambunctious, devil-make-care child to a cautious, shy, anxious little giant. I say giant, because he stands now at 5'8", 199 lbs and is just 12. He is considered obese now, but was always larger than his peers. The obesity has set in because he is now exercise intolerant, and cannot stand more than an hour of any movement without paying for it later. We have so many things here for him to use for exercise, but causing him to use up all his energy stores in 20-30 minutes of exercise means you have a sick child for the rest of the night and possibly the next day. Needless to say, we don't do that.

I do want to mention all the doctors we went through. Four neurologists, two cardiologists, two pediatricians (our last one has just gone AWOL on us, not returning phone calls or faxes since March 5th). I could write a whole blogpost on doctors, but I have learned to tone down the heat. At one point, I hated them all. But I realize that doctors are human and why did I think all the beautiful, compassionate humans went into the medical field? There are good ones and bad ones. We saw our share of both. For now, our medical team consists of a developmental pediatrician (who first correctly diagnosed him), an ENT who's office staff is fabulous (for the sleep apnea), one GI doctor (for gastro issues) and what has to be the best therapist in the world, who from the beginning, never doubted us when we said this was not a psychological issue.

We see the psychiatrist today. My son has a great deal of anxiety about becoming a chronically ill person. I am hoping to be able to help him navigate through these tender years and still retain some confidence and self-reliance. I am hoping the psych will come on board, but he started out combative. I pushed right back. It is amazing how someone who never met you before attempts to tell you all about yourself after only 10 minutes of dialogue. I am going prepared with printouts of my son's disorder and see what happens.

The end result of the year was that my son never made it to middle school. Not really. He only made four days his first two weeks and had to be brought home. He is attempting to return part-time now, but since August 2007, he has been homeschooled (by tired ole me!) and then tutored by a teacher through our County. Both attempts have produced very little by way of educational advancement. I was too close to the situation (I swung between being overly cautious and Mommie Dearest) and the tutor needed to return to the sixties. LOL! We both did a banged-up job of trying to get information into a brain now permanently changed by OSA and Dysautonomia. I can see the humor in the situation now, but at the time, it was far from funny.

Imagine trying to get a brain deprived of oxygen day and night, sedated on seizure meds (he was misdiagnosed with seizure disorder of the temporal lobe in the beginning) to remember the ancient map of Greece and Sparta, the agricultureal pursuits of ancient Mayans, and why a penny turned green when exposed to vinegar! It was a hoot! Everyday was an adventure. Who needed the Army to be challenged? I am actually happy that we are attempting to return him to school. Yes, I still nailbite, but at least I am not trying to explain exponents and least common factors anymore! How I do appreciate teachers after being through all this!

There is an old song that says, "What a difference a day makes." My line is "what a difference a year makes." We have thoroughly changed within this year. No more taking life for granted or sitting back and waiting for things to happen. Even though I have been disabled since 2003, I still operated in my old life. I had 1-,3-,5- year plans. I was a methodical, pace yourself kind of person. I had been on the internet for 20 years and didn't embrace half of it.

Now that is all changed. I am writing again (this crazy blog calls to me!), I am taking pictures again (school major was photography), and I am about to buy a vidcam. Why? Because I don't want my son to miss a single opportunity to enjoy what he has left.

One quick story from this year might explain it. After taking my son to a neuropsych evaluation last year, the evaluator came to me, saddened and obviously concerned. She questioned me over and over about my son's habits and routines. Then she began to give the bad news. My son's memory was shot. He literally did not have much left of his short-term memory and his long-term memory would be sketchy. She likened his brain to a polaroid camera that took shot after shot, but then threw the pictures away as the next one came out. The analogy was stark and very cold.

At first I was devastated. How can anyone learn if they can't remember? Even visual or audio cues did not bring recognition. The therapist began to compare him to Alzheimer's and traumatic brain injury patients. Then I decided to do something. After raising an autistic child, I knew that repetition does help. I decided to fill all the moments. Continually fill them with memories, conversation, laughter and sensations. Pictures are left out of albums and placed in huge frames to be seen at a glance. Music is played over and over again (I actually like that sometimes). Certain sayings are repeated especially if it was funny. I bought him an audio recorder to record his thoughts, jokes, anything he wants to hear again and again. And when the vidcam comes, we will make gigabytes of memories to be replayed as often as he likes.

If his brain throws the memories away, I will be there to pick them up.

And keep them safe.