Voices Carry

Hush hush
keep it down now
voices carry

-- "Voices Carry" Till Tuesday

Whatever this phase is I'm going through seems to involve a great deal of feeling geographically and emotionally isolated. I have definitely felt worse in my life, but this type of feeling seems to have no end these days. Today I allowed myself to vent in parent group about this new feeling of isolation. I talked about how I don't trust the medical professionals here, most of which have quite obviously never had a patient with Williams. I talked of how brutal having a special needs child is on a marriage. The strikingly loquacious speech pathologist was scheduled to give her monthly lesson today on promoting communication and language in our children but allowed the group to vent and talk for most of the session. Sometimes it seems the people who lead these sessions vent more about their own lives than we do sometimes, and I often find it unprofessional and highly annoying. There are mothers there with children with a variety of conditions, including Down syndrome, mild to severe learning disabilities, fetal alcohol/drug syndrome, and autism. We are all beginning long journeys with our children, and I suppose even if every mother had a kid with Williams, we would handle things very differently. However, there is no doubt that I get something from other WS mothers that I can't get anywhere else on the face of this planet. The people who are supposed to help me the most are by far the least helpful, and the people who are new at this are the most reassuring of them all. I only halfway regretted voicing my opinions this time. Part of why I feel so alone is that every time I try to let some of my feelings out, I'm generally extremely sorry I did and curse myself afterwards all the way to the car (stupid, stupid, stupid). Frankly, the response I get usually just makes me angry and sullen. I usually promise myself I will never discuss my feelings again except here in this blog. The only thing that made me start chewing my fingers until they bled to suppress any blossoming rage was that it was explained to me by the speech pathologist that I need to fight for my child because nobody else in the medical community will. No shit, Sherlock. So fighting for my child will magically guarantee more qualified, competent medical professionals will appear in this community? Color me unreasonable for being frustrated nobody seems to care or for wishing there was a Williams clinic within 1000 miles.

I think there is quite a bit of fight in me, thank you.

I was asked to hold an infant for a few minutes during the session while his mother temporarily left the room. Again, nothing in my blackened heart budged. As my biological clock begins to run out of time, I feel absolutely nothing at all. I actually felt guilty for a few seconds about feeling nothing but then found myself wondering if it was socially acceptable to hit the Taco Bell drive-through at that time of the morning. I couldn't help it. After all, this is the same baby who smells a little like a gordita supreme to me.

Overall, my blueness has improved. In part this is because I called the cardiology office, and the woman who answered the phone actually remembered Erik from last year, even though his cardiologist has moved into a different facility across the street (one of my fears was that he was lost to followup). They asked if they could call me back, and I agreed. I was soon informed that since Erik is doing so incredibly well, he would not need another echocardiogram until October when he turns 3. I very politely explained that it is because he is doing so well I have become more of a paranoid freak show than the mothers who are go in with their children every three to six months. The nurse very appropriately and genuinely laughed with me and said I was completely welcome to come in and get the study early to help alleviate any worries, but I declined and said I put all of my faith in this particular doctor and that we would see them in October. Wow. I'm so glad I called. For once I did not feel like I had been swept under the rug by the medical community. If only all of his medical care was of that same quality.

Tomorrow a phlebotomist comes to the house to take our blood and urine for our new life insurance policies. This means I'll go easy on the gorditas, margaritas, and cigars today.

After that, I'm not promising anyone a dang thing.