System Failure Imminent

I have been out of sorts over the last few days, for some reason. I suppose I am still feeling overwhelmed with details concerning the WS convention, my excitement about the upcoming WS run, and witnessing my friend process the fact he has a serious illness that will likely eventually take his life in the too near future. I have been completely going through the motions here at home and can see I am not letting myself feel much of anything at all. Even sitting here tapping at my keyboard doesn't seem to be shaking anything loose. I feel numb and weirdly calm. Something doesn't feel quite right.

I was invited to attend a new support group for mothers recently. I missed the first one a couple months ago because I developed a migraine just before I was supposed to leave the house and ended up twisting in pain under a blanket on the couch. I haven't had a migraine since. Tonight the meeting is being held in the hospital cafeteria. The bad news: No wine. The good news: Sundae bar. I'm not excited about seeing how this will affect me, especially in a clinical setting that reminds me of my occupation and the hellish days I spent there with a baby who cried nonstop. A despondent woman recently hurled herself over a railing there, tumbled through the air, and landed on the lobby floor not far from a glossy grand piano in front of a handful of horrified onlookers. She passed away a short time later. It's comforting to know that I'm not the only one who finds the hospital depressing. Erik's therapist keeps mentioning this group to me and actually sort of pushing it, but I can't figure out if it is really a good idea or not. I have "normal" and "special" balanced quite nicely in my life, and I'm a little wary about adding too much "special" stuff to the mix (that probably makes no sense at all). I do adore one of the women who originally invited me. Her daughter was in Erik's early intervention class and has Phelan-McDermid syndrome. I'm still unable to talk about even small details about Erik comfortably in a social setting, and I am hoping these women can teach me how to do that. I have learned that many people ask me which preschool attends, and telling them the name reveals the fact that he is in special education. Not telling them the name (Oh, he's in a little community preschool) either generates more interest in the name or makes me sound as if I am hiding something. Argh. Will this ever feel natural to me? I know what and how much/little to reveal depending on the listener, I suppose, but my technique simply sucks.

My parents took Erik to the pool yesterday afternoon for therapy. The temperature of the water was too high, so they asked them to wait for 10 minutes. My mother took Erik on a sprint around the block while they cooled the pool down. Therapy apparently went well, and Ella, one of Erik's friends from hippotherapy, was there as well. She has Rett syndrome and is largely unable to speak. Her body is very stiff, and she rocks back and forth on her legs to ambulate. She does this quite well. Erik usually marches right up to Ella when we are at the stables, unafraid and unburdened by any knowledge of her disability, and stares right up into her eyes. She usually looks down at him, blinks her eyes, and rocks back and forth as he smiles and says, "Hi, Ella!" Lately when he has done this, the corner of her mouth turns up as if she is trying to smile at him. It always makes my day, as she played hard to get at first and seemed largely unimpressed with Erik's efforts at charming her. Yesterday Erik easily recognized her voice from behind a door and was excited she was there. My mother said that she was in the pool when they left, and she actually might have attempted a wave at Erik. Hearing this caused my emotions to seep out a bit before they went into hibernation once again.

Erik kicked me, shoved me in the throat, pinched me, slapped me, and growled at me yesterday when he got home and we were alone again. We have really worked to teach him that these things are not acceptable, and, for the most part, he is improving. However, when he is exhausted, it just doesn't seem like he has any filter on his emotions whatsoever. He can't seem to stop himself and even lists the consequences before he acts. I'm not sure how in the world we will deal with this when we travel to California. It's hard to watch, and I have no better solution than telling him he needs to calm down and carrying him to his room until he does so. I am consistent but feel worn down after being hated like this and then having to repeat this process nine times in a row. It sometimes seems we don't get anywhere for hours. There are days during which I feel like I am trying to get somewhere quickly in very deep sand. It is, however, getting a little better. I just hope it does before he learns to destroy my things, which he is at least thinking about doing these days, or gets strong enough to really injure me. I was happy to see a class on behavior problems offered at the convention.

On days like these (hell, weeks like these), I remember those words Anne McGarrah's mother wrote at the bottom of the card she sent to me after her daughter passed away from complications of WS. They were written in red capital letters and have given me strength day after day.

BE STRONG.

Only God Knows Why

I have had volumes to say lately but apparently lacked the strength or the knowledge required to transform my thoughts into words on my computer screen. I will keep some of my thoughts private, as I just can't imagine letting the sunlight hit some of them at all.

In essence, my brain is in overdrive before our IFSP meeting Monday and the first day of preschool Tuesday. I was invited to attend a fundraiser at the stables where Erik receives hippotherapy by a friend I met courtesy of our kids' respective syndromes. I declined via e-mail, as I was feeling incredibly grouchy and the last thing I felt like doing was writing this admittedly wonderful facility another personal check. After she received my somewhat vague and probably uncharacteristic response, she called to check on me. As much as I didn't feel like talking to or seeing anyone, it was surprisingly good to hear her voice. I told her I couldn't quite put my finger on the sudden, week-long bout of clinical-strength depression I seemed to be experiencing. It was then that she admitted to me that there are times when she stops and wonders exactly what in the hell has happened and how she came to be where she is today with her child. We agreed that we both were formerly under the impression these kinds of genetic anomalies our children have simply didn't happen to those around us and that we were exempt from anything besides having a perfectly normal child with beautiful fine and gross motor skills and every single one of their genes. Before Erik, I had no idea a person could be missing genes! What ended up occurring certainly wasn't included in the play books when we were selecting our nursery themes or sipping pastel-tinted punch at our baby showers. Before I gave birth, I once told a friend that the worst thing that could happen was to bear a child who was mentally retarded, as I wasn't nearly strong enough to handle it. I stated that with smug confidence, as I knew it simply wouldn't happen to me, anyway.

I was wrong about a lot of things. It can happen. It happened to us.

Yeah, yeah, I know. We established the fact that much of what has occurred simply sucks long ago, but the way she put it into words really struck a chord in me. She is a positive, strong person who rarely complains. There are just moments when moms like us look up from the routines we have come to consider perfectly normal (Windexing playground grit off of our child's orthotics, covering tiny ears to protect them from upsetting noises other children don't seem to hear at all, administering medicine to control problems that usually occur in the elderly, pulling our child from the sunlight more readily than other children to prevent serious vitamin D and calcium issues, and singing songs over thunderclaps as our inconsolable kid sobs) to stop and say, "Hey! Just wait a cotton-pickin' minute!"

Just what in the hell DID happen? Am I really doing all of this? Is this a dream?

It just doesn't seem real sometimes. However, after a moment like this, reality eventually crashes in on me, and I am coming to the realization that this is forever. There will be no end to it all--and that's if I'm lucky. Pardon me while I learn to breathe again so I can survive the panic attack I seem to be experiencing.

Last week I was feeling especially sorry for myself and my child. I squeezed my eyes closed and let my brain marinate a bit in my blue soup of thoughts, even though I know that's a dangerous and crazy thing to do. When I did this, I saw something completely new. I pictured myself 20 years from now standing in front of a neat line of Tupperware containers on my counter, and I was filling each of them with hot, homemade food to place in Erik's freezer. I stopped my daydream long enough to wonder if he would know how to operate a microwave without burning himself. Would his teeth decay from a poor diet or his brain's inability to allow him to successfully brush both sides of the teeth in his mouth? Would he know how to fix himself a meal? If I was freezing him dinners, he might be living on his own quite successfully, but I would have the same work and the same worry ahead of me. Maybe even more of both!

What would be worse? Having to let him go or not being able to let him go?

I'm afraid of burning out. Of being so jaded I won't love my son the way he deserves to be loved.

Most of all, I'm afraid of never being able to rest. Of watching my friends' children leave home for shiny, new lives and careers as I assemble peanut butter and jelly sandwiches for my baby. I could hardly bear to think about it anymore, so I opened my eyes again.

The future is unknown for every mother, of course. There is no way to know at this point what Erik will be capable of doing or what his life will be like. It's not really up to me in the long run, although I help him when I can. I don't normally ruminate on these things constantly. In fact, I consider myself lucky I may have a mama's boy on my hands. He is a great companion, and we make each other smile. Lately I have needed to think, and my depression seems to be lifting as I sort things out. Perhaps part of what I am feeling is being afraid to let go next week--and of never being able to really let him go at the same time.

I have been wrong about a lot of things.

Even in the midst of my depression-generated daydream, my face was dry, and I looked happy and strong. There is no question that I will do what I need to do. I hardly know the woman in my daydream with my own face, but I hope that we meet up eventually and become one and the same.

I can handle this, and I will handle this. I guess all I can do at this point is let go of his hand and see what happens.

I have been wrong about a lot of things.

New Beginnings

For once I woke up this morning not feeling like a frumpy old lady hiding in baggy clothing. My new attempt at taking care of myself has paid off in three months. Big time. I am unable to state I simply reached my weight loss goal anymore, as I have lost much more than I imagined I could or would. Once I set my mind to it, I lost a grand total of 30 pounds through good old-fashioned diet and exercise. I am a walking Weight Watchers advertisement. When one of my friends suggested I join with her three months ago, I never imagined my life would change like this. I don't do meetings, so I signed up on line and have been tracking myself. The eating disorder I have been babying for years that has kept extra weight on my body died a surprisngly quick death. All I needed was some sort of direction. Some sort of battle plan.

To celebrate, Shaena accompanied me to the neighborhood tattoo/piercing parlor Friday, and I chose a small, bejeweled stud for my navel. Even through I have four holes through my ears, they were placed eons ago in a jewelry store. I don't recall setting foot in a tattoo parlor before. I sat on a sparkly red bench in the sunlight streaming through a window draped with plastic stars while a couple very quiet, hip-looking, nervous young women stared at me, likely wondering what in the Sam Hill a woman my age was doing in a place like that. A very voluptuous, liberally studded young thing invited me back into a room with many windows and had me lie on a table that brought back brief but unpleasant medical memories. The young things looked on through the doorway as I lifted my shirt slightly and she examined my stomach. She stood me up in front of a mirror and marked on me with a purple ink pen before inviting me to relax again on the table and placing drapes around my freakishly deep belly button, talking nonstop through the whole procedure. I am unable to tell you exactly what happened next, as I decided to stare at the ceiling. Shaena stood at my side and watched clamps placed on my flesh, which I found quite uncomfortable. I was told to take a deep breath in and then slowly exhale, at which time she apparently pushed a giant, hooked needle through me without any sort of warning (or anesthesia) whatsoever.

AHHHHHHH, KELLY CLARKSON!

I felt a strange rush of warmth to my stomach, as if I had just consumed a shot of tequila. I pondered exactly what was happening to me physiologically. My body seemed to be under the impression I was wounded, but the sensation quickly passed, and I stood up. Done.

I was off to a fajita dinner with unbuttoned britches.

Today I turn 37. I feel pretty good about that because I feel like I'm healthy once again and I'm ready to let the world see me just a little more. I am over 10 pounds lighter than when I became pregnant and weigh about what I did when I walked down the aisle with sparkling hopes and dreams from the implied promise of a perfect life waiting for me. In a way, I feel like I'm starting over and stealing some of those hopes and dreams back. My innocence is long gone now, and I am old enough to know that life isn't as perfect as I once hoped. I can accept that, for the most part. At least I'm learning to.

I have new strength and a pretty, new battle scar.

Bring it on.