Vent

Life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride

-- Gary Allan, "Life Ain't Always Beautiful"

Erik and I are having a rough week. Erik's favorite thing to do these days is to slap me repeatedly and yell no. He did both without warning after I made him a sandwich and presented it to him for lunch this afternoon. I concluded that he wanted peanut butter instead of cheese and just didn't have the words to express his disgust. I'm looking forward to the beginning of school when we have a full schedule. I have support group tonight, but I don't feel like talking about anything Erik-related today. I found myself here instead, and so I type, surprised that there are actually words coming from my fingers.

When Erik was a baby, I remember absolutely nothing about being a mother coming naturally to me like I was led to believe it would. I remember holding my limp, horribly skinny little baby on my lap and gripping onto his wonderful, wide feet, pumping them up and down while I asked my own mother, "What am I supposed to do with him? Am I doing this right?" She said that she thought that I was, but I always suspected I wasn't doing the little things correctly. He didn't give me the feedback other babies seemed to give their mothers. Maybe that's why I never wanted another child. I simply can't stomach the rejection again. I just attended my 20th high school reunion, and a few of my old classmates asked me if I was going to have another baby. There were three pregnant women there. I automatically told them how fabulous my life was and that it wasn't on the agenda. Nobody needs to know what's really happening in my head or how messed up that topic is for me.

Some things have changed since I had a newborn, but some things have stayed very much the same. My husband called me from work today to chat, and I admitted I still have no idea how to play with our kid. He is not thrilled with toys, doesn't understand the concept of playing a simple game made for peers his age, and would rather destroy things around the house most of the time than do a structured activity. We still have locks on our toilets and toilet tissue for this reason. While Erik is sticking his head in the toilet giving himself swirlies and spinning glorious, pale loops of toilet tissue into the air, his friends are learning to use these items correctly and have moved on. It just kills me. A friend showed me how to lock my computer so I didn't have to turn everything off, and Erik spent the morning at my desk pounding on the keyboard, despite my strict warnings not to. He had a borderline violent physical reaction each time I told him no and took him to his room but continued to do it, anyway.

What do I do with him instead? You tell me. I can't take him to a McDonald's to get coffee and let him play because he clings to me and hates every second of it. Sometimes he'll even beg me to go home. I can't take him to the playground because he gets run over by the other children, and I die inside after watching the other families, although lately I have been forcing myself to go for his sake. He is beginning to enjoy making his own fun. He sometimes plays with the filthy bark chips and is developing what may be an obsession with the park sprinklers but rarely wants to use the equipment made for children unless there is something to spin attached to it. We inevitably end up alone in the corner of a park, trapped in his own world. He now enthusiastically greets the families riding by on their bikes, and most of the other children ignore him or look at him like he is a freak after he says random things to them or shouts hello 50 times in a row. I no longer care how other parents looking at us, but the other children still kill me. Our outings to get groceries are almost history. He almost doesn't fit into a shopping cart anymore, especially with his plastic orthotics on, and I am unable to control him in the store without him being strapped down. He reaches out to grab everyone who passes by and will not let go of them, which can be quite frightening/embarrassing. And don't even ask me about how toilet training has gone. He will be FOUR soon, and I'm still changing diapers with no end in sight, being kicked in the chest while I try to care for him. Maybe we'll go to the library again soon. That went well last time.

I know that once his IEP rolls around, I can ask for help again. One more month.

His birthday is in October, and he will be visiting the cardiologist. At the convention I learned that ALL people with WS have what is called "elastin arteriopathy." That's a type of general arterial disease. We just need to know if this currently affects his health or not. No biggie, right? In addition, we have to sedate Erik to keep him still during the echocardiogram. Our attempts at unsedated echoes in the past have failed miserably and ended up requiring an additional appointment. Sedation in itself is risky, too. In one afternoon, the procedure itself or the results of the procedure could alter our lives forever. While I know things will likely turn out just fine, I just detest waiting.

So here I sit, trapped at home. Lonely but wanting to be left completely alone.

News from the PT

I noticed that Erik is walking on his toes to the extreme now when he is free of his orthotics. Sometimes to the point where his bare toes curl under like a ballet dancer. His orthotics seem to have effected little to no benefit in the way of training him to walk correctly, although they do continue to keep his feet nicely flat when they are worn.

Today Erik's private physical therapist informed me there has been a definite change. Erik's body is stiff all over, likely because his long bones are growing faster than his soft tissues. This is not ominous news by any means, but I find it very scary at the same time, as I have seen older people with WS, including the humps, the slumps, and the strange muscular contractions. The little physical manifestations that make them appear like the elderly way before their time. Erik blew off the Williams growth charts months ago in the height category. Years ago. He has not gained weight in months but just seems to lengthen. Erik is plain tall, just like me, and yet is unlike his peers with the similar genetic deficiency. The deficiency that produced human beings that were perhaps once called "elves" or "pixies." All I can see ahead is more of the unknown in the form of a rapidly growing boy. How many WS parents have been told their child is tall, even by those who are unaware of this diagnosis? I can only do what is recommended and hope for the best, hoping the genes he has don't clash with the genes he lacks.

More stretching.

More slant board for the heels.

More protein.

More praying things will catch up in him.

I am fully aware that this condition makes any sort of typical change in his rigid little body a giant dip in this emotional roller coaster of mine. I'm trying not to worry. Easier said than done.

Grow, muscles, tendons, and ligaments. For God's sake, grow.

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.