Transitions

Erik and I just returned from breakfast at my parents' house and then school/parent group. We ate my mother's to-die-for rhubarb custard pie with Erik's great-grandmother, who was here to visit and watch my mother's symphony concert.

With the change in the weather, I feel enormous changes coming in our family as well. Erik uttered the word hungry after a nap the other day, although he has not said it since. He has never told anyone he was hungry before. It was reported by some staff members at his school that he has actually been seeking the company of other children and calling for them by name instead of running away from them. Today was no exception. He was singing a little song to himself when we left. He has transitioned into his big boy bed, which intially went well, but now I can't get him to go down for a consistent nap. This means the two to three hours I had during my morning to work or write are ancient history. My blog entries may become further apart for this reason. I also suspect he is not staying in bed at night, although he always stays in his room. I will go by his door at night and see that his light is on. I turn it back off, put away his toys, and lead him back to bed. I find him playing on the floor in the morning, and he is becoming uncharacteristically surly at the end of the day. I suspect he is not sleeping enough, although he does get a decent nap in his playpen at my parents' house in the afternoon. As much as I cheer for his new accomplishments, things have definitely been turned up a notch in terms of being challenging. What is most scary to me is that after months of successful therapy, Erik is lightning fast on his feet. He runs straight down the road for the street and does not consistently follow commands to stop as he heads for cars and trucks roaring by at 50 miles per hour. We are all working with him on this. He often becomes angry and frustrated in public and easily wrenches his hand free from mine to run from me when I try to steer him in a direction he does not wish to go. It's typical 2-year-old stuff mixed in with an inability and/or unwillingness to follow simple instructions and commands. His therapist agrees this is scary stuff.

Am I ready for this? Oh, heck, I don't know.

The last time I felt like this was in October after he received his AFOs and instantly talking to strangers for the first time. I was frightened then, and I suppose I am frightened now. I adjusted before, and I imagine I will adjust again. It's part of watching him grow.

We are anticipating four more weeks of summer early intervention program after the Fourth of July, and we will continue home visits. After that, it's off to preschool in the fall, baby, on the short bus. Even though he will spend two years in preschool, this is a pretty gigantic step for me. It seems like I just became a mother, and, although I do not consider myself overprotective, it is hard for me to let him go a little more as time goes on, knowing how dangerous this world is for a trusting soul like my son is...and will always be. It is simply no longer possible for him to be with me 24-7. He seems to thrive despite each and every change and I love to watch him succeed.

I now find it easy to explain this journey I'm on to a mother with a typical child. No, I can't describe exactly how it feels to another parent, but I believe I succeed in getting as close as humanly possible here. What I can honestly say is that many of the things parents usually watch their children do automatically we are required to teach our kids to do -- from manually positioning their bodies in order for them to learn to move themselves to teaching them the simple art of play. It can be exhausting to my bones, but it can be rewarding, too. I have a library of handouts and publications to instruct me how to best teach my son to do things most children take for granted. I have manuals on his particular syndrome. I received approximately SEVEN thick handouts today on language, music, play, and toileting today. At group today the speech pathologist told us about a woman whose first child was born with a disability. This mother threw herself into caring for this baby and doing what she was instructed to do by professionals. By the time her second child came, she saw everything she was required to teach her first child just happened in her new baby. Naturally. No handouts. No books. No speech pathologists. No physical therapists. When I watch other children, I am amazed. Many times I see a child do something on the playground that comes completely natural to them, and all I can utter is, "Wow." I have heard the exact same word come from my husband on such an occasion. We look at each other, smile weakly, and shake our heads in disbelief.

On the other hand, Erik is incredibly amazing, too. No, many things do not come naturally to him. It's frustrating, hard work for both of us -- as well as the people who love and care for him on a daily basis. But when he does that one thing that I never thought I would see him do, I honestly feel like I can walk on air. I know he had to put his heart and soul into learning how to do it. And that is something a parent of a typical child may never fully understand. That is one of the incredibly beautiful, bittersweet gifts that come with having a child like mine.

As for any bad feelings I have had lately, I have concluded that (a) I still have bad days here and there and (b) because I don't have as many bad days and my husband and I are on different pages at our own speeds on this journey, I feel lousy. That's right. I feel bad for not feeling as bad anymore. It's part of the process I didn't see coming, but here I am.