Progress

I'm not certain where to begin today. Erik and I just returned from school this morning. He now smells a lot like Italian dressing for some reason but seems happy and animated. We braved the ice-glazed roads and sidewalks but made it to school and home safely. It was a fairly noisy day with a full class, but Erik reportedly did just fine. He apparently retrieved a bottle of catsup from the refrigerator upon request for a therapist. Erik's motivation is often fueled by the possibility of enjoying a delicious snack. Whatever works!

The mother I met this summer who has a little girl with Phelan-McDermid syndrome switched classes and was able to join our parent group for the first time, which I enjoyed immensely. Her daughter looked great today. Since the last time I saw them, she has grown (her syndrome causes accelerated growth for a time; i.e., 5th to 75th percentile in a mere two months). She also looked so much stronger. I was amazed. She is learning to use a tiny walker and seems to love it. Although she has not mastered turning it yet, she seems to be quite proficient at moving forward and enjoys her new independence. Although I feel a very real connection with her mother, Phelan-McDermid is very different from Williams, and the range of how severe the effects of this syndrome will be varies greatly. When I can almost bank on any progress Erik makes in terms of development being a permanent, solid stepping stone to acquire more skills, she will always wonder if her daughter's progress is temporary, as regression in motor/speech skills is common and sometimes permanent. She has very different challenges than we do, but our worries, grieving, and joy we feel from our kids' progress seems extremely similar. I have every reason to believe that her daughter will excel and thrive, especially after seeing her today for the first time in months. Seeing progress like this always sparks new hope in me for Erik and renews my faith in general. I have begun to realize that Erik's school is a unique place progress can be visualized and measured. It's not as depressing as it used to be for this reason.

The meeting with the associate pastor went well yesterday. We talked for almost two hours, so my worries of having nothing to say were completely unfounded. She recommended a couple of books which I will hopefully have an opportunity to review and recommend. We talked of pain and grieving. We talked about the individuals I am trying so hard to forgive for blaming Erik's problems before and after our diagnosis on gargantuan deficiencies in my mothering skills/common sense and those who continue to judge me on a daily basis in grocery stores when they see that something is wrong with our son. This has been absolutely brutal on my confidence as a mother. I hope to become deaf to those words and blind to those stares, but if that is not possible, I would at least like to let all the anger and resentment go, as it serves no purpose whatsoever and was never really about me or Erik at all to begin with. I believe most people mean well. In fact, most of the looks and questions we get are from people who simply curious and would like to know why Erik has to wear braces or acts differently from a purely scientific standpoint. Being a part of the medical community and having studied a number of syndromes and disorders in college, I am completely comfortable with this kind of curiosity.

We covered many more subjects, but in the interest of keeping part of my life private and the risk of boring you to tears, I will cease my report here. I am happy that I didn't shed one single tear. Looking back, I now know why I reached out when I did. Our church will be the very first place we "mainstream" Erik. It doesn't sound all that scary, I suppose, but it is a pretty big deal to a parent like me. All of our firsts are going to be very wonderful and very scary. It's nice to have a safe place to try it for the first time.

I had a nightmare about Erik being a fabulously talented pianist but not being able to make it up the steep stairs to the front of the church to the piano. After all, I had enough trouble ascending the steps wearing a ridiculously fluffy gown on my wedding day, perfect depth perception and all (Exhibit A: Wedding video of Nancy lurching up steps like Herman Munster). Ms. T. in parent group (The Woman Formerly Known as Rickets Girl) offered that her church has only one step to a much lower altar. Of course, switching churches for that reason would require a great deal of additional paperwork, so I'll stick with being a Presbyterian, at least for now. I am now confident that if he needs help in any way, he will receive it in a kind and discreet manner.

For parents in doubt: John 9:1-3