Hitting The Wall

What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got?

-- The Cowardly Lion (Wizard of Oz, 1939)

I have decided not to write about what happened at church, at least in graphic detail as I have a tendency to do.

I just can't.

The majority of the time I am one put-together kinda gal. Sure, I'm a little on the shy side, but nothing like I used to be, thanks to Mr. Erik Quinn. I have a generous supply of polite smiles ready to dole out as needed, and the average Joe would never know I have a care in the world as they passed me on the street. I am blessed with the ability to make people laugh to the point of snorting beverages out of their nostrils and consider myself a lot of fun to be around in general. Sure, I have my bad days, but, thankfully, I live and work the majority of the time in the privacy of my home, and nobody has to know what kind of day I am having. Only my friends, family, and on line diary readers have seen me show what the last three years has done to me emotionally here and there. Most days are actually pretty great, anyway. I do know how incredibly lucky I am. How wonderfully blessed I am. I am beyond thankful for what I have. However, the bad days that come occasionally are straight from the depths of hell, and they usually sucker punch me in the stomach without any warning whatsoever.

Sunday I slipped for the first time in public. Big time. I felt myself breaking, and I couldn't stop what was coming. I slipped for all of the world to see. I found myself hopeless and weak, and I can't even begin to talk about it, even here. We went to church...yada, yada, yada...my husband steered me out to the car halfway through the service in the driving wind and snow with our son in his arms. He told me that although some everyday situations like church weren't working out at the moment for us, we would learn to find our own way. On the way out the door, we passed a mostly bare Christmas tree with a few slips of paper the youth group had decorated hanging for dear life onto the branches in the storm. As I watched, several of them ripped loose and flew across the street to kiss the surface of the high school athletic field and disappear into the winter sky. I found one I liked, detached it from its twisted wire anchor, and placed it in my purse. When I got home, I placed it on my own tree.

The church called today. I let the answering machine pick up. The woman who discovered me in the downstairs hallway sobbing and pathetic apologized for what happened and asked what it would take to make our lives easier. She said, "We really need to move forward from this." Oh. Okay. Where have they been after they offered to meet with us weeks ago? Where were they when they all went on without us, like the rest of the world tends to do, enjoying the spoils of Christmas plays, cookies, and the scent of coffee in the crowded hallway while we sat at home? Where were they when my son simply glanced at the interior of the nursery on our last few attempts to attend and began sobbing because of his blossoming anxiety and the memory of the sounds of a fussy baby from weeks before? Just what should I do about the fact he doesn't fit in anywhere? The fact we have no place to even SIT when we attend church except for out in the hallway?

Right, let's move on and put this bit of unpleasantness behind us all.

Please. Tell me what to do to move forward. How to keep my heart from breaking when my son is practically begging me to turn the car around instead of visiting a friend and her child because his brain can't process the normal noises children like hers make. What to do when I can't attend my best friends' baby showers ever again because most of the little things associated with babies make me physically ill when I look at them. What to do when my son tries to wrench his hand from mine and run out into traffic, not seeing cars coming, and punches me, kicks me, and growls at me when I restrain him. What to do when we are instructed to bring him to Sunday school despite the fact he can barely hold a crayon. What to do when a police car passes with its siren screeching in the night miles away and he wakes up screaming. What to do when I am increasingly isolated in my own home from my own friends who are raising the typical kids he desperately wants to love but cannot physically stand being around. What to do with a kid that is proving to be exceptional in most areas, despite missing 20-some genes, but who cannot seem to function in the outside world surrounded by his peers. What to do when there is just a little less Erik and a little more Williams syndrome in his face and in his voice each morning I go into his room. Tell me how to move forward. Please.

Because you asked that question, I feel as hopeless and frightened as ever.

Why?

I couldn't tell you what would make my life easier at this moment even if I tried.

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.