Dealing with Diagnosis

(This is a follow up post to these previous posts.)

Hi everyone, I finally went to the neurologist and he looked at all of my medical records and previous tests, took a history, did an exam along with some new tests (including this weird shock test – yucky!) and his final diagnosis was…. You guessed it…same old thing (Chronic Fatigue Syndrome) plus a new one 🙁 Fibromyalgia.

My thoughts on this? “Great, just dandy!” My mom has Fibromyalgia and unfortunately I know enough from watching her suffer all my life to know that this does not have a good outcome. I was so nervous about going that I was having anxiety attacks, insomnia, and terrible anxiety related symptoms leading up to and during the appointment. Afterwards, I just felt a mixture of loss, sadness and numbness.

Don’t get me wrong, I was relieved that it isn’t anything else, anything worse even but part of me was so disappointed because I was hoping that he would find something temporary or curable so I could go back to my life as normal. I haven’t been able to grasp the fact that this is a final diagnosis yet. I talk the talk but I can’t walk the walk yet if that makes sense. Acceptance is a hard place to get to and I’m not there yet, at least not for this latest blow. I’m still holding out a secret hope…well, I guess it’s not so secret anymore is it?

I really need to do some more research about these diseases but it is something I keep putting off, I just don’t feel like facing it…yet. I did the same thing when my son was diagnosed at age 2, first as “developmentally delayed” and then with Autism. I did very little research into Autism because for years I was in a state of denial. I read what I HAD to to take care of my son but I didn’t really DELVE into the subject for quite some time.

Because I had a preconceived image of what Autism was supposed to look like, and because I couldn’t yet accept such a diagnosis for my baby boy, I convinced myself that the doctors were wrong. Yes, all of them…I know, I know, not the smartest thing to do but I didn’t realize what I was doing at the time. Only now, looking back do I see it and understand why.

Don’t get me wrong, I continued to take my son to his doctor’s and specialists and for all of the therapies, special birth to 3 program, pre-school, special ed, etc., I made sure he got all of the treatments I could find for him but INSIDE of me, deep inside, I just didn’t believe he had Autism. It may sound ridiculous but even now, ten years after his first diagnosis, I still find myself starting to drift back into those thoughts of denial on a regular basis. The only problem now is that there is no denying Autism when it stares you in the face every day for 12 years.

By now I’ve done my research and I know what there is to know about Autism but I still allow myself to forget that Tyler is any different from other children until it smacks me in the face. (Which is about every 10 minutes lately). I’m not sure that I can actually “grasp” complete acceptance when it comes to what my son’s future may be, and I suspect that’s the same thing that I’m doing with regard to my own health diagnosis. It’s MY screwed up way of trying to hold onto hope for both Tyler and myself.

Letting go of your hopes and dreams for your child (and yourself) is so difficult. I’m being faced with this issue with my older son too. I think someone is trying to TELL ME something and I do NOT want to hear it! I can’t talk about my older son because he’s sixteen and needs his privacy but let’s just say that I am being forced to let go of all of my expectations, my previous hopes and dreams for him and let him make his own choices. I have to let him have his own hopes and dreams, even if that means that he chooses not to have any.

Parenting was so much easier when they were little. It was a different kind of difficult. I’m so tired I can’t think clear enough to try to explain the difference but I’d trade today’s difficulties for yesterday’s in a heartbeat! I keep telling myself to look for that half full glass instead of staring at the half empty one sitting in front of my face but today it’s hard.