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.

Chilly

Samantha & Erik

Our trip over the mountains to visit my soon-to-be 90-year-old grandmother was placed on hold because of an approaching storm that looked like a pulsing, chartreuse booger on our meteorologist's radar screen on last night's news. It did snow here all day Thursday, but we don't have much to show for it now. Thursday was the day we had pool therapy in the morning and a home visit just an hour after we got home from that. It was insane. On top of everything, I grocery shopped, worked, shoveled snow, cooked dinner, and rescued a stray dog that refused to leave our property and sat in the storm all day. I am happy that we survived the week, although I'm now exhausted. I'm glad that our IFSP has been rescheduled for March.

Erik stacked some blocks this morning, but he is more into demolition than construction. Last night I built towers, and he systematically destroyed them Godzilla style. Each time a tower met its demise, he would exclaim, "Oh no!" or "Oh nuts!" He later fell off the love seat like a seasoned stunt double, crawled up onto my lap, and said to himself, "Poor baby!" What a character. I laughed a lot yesterday.

Since my computer's hard drive kicked the bucket, I had to reconstruct an updated backup of my blog to store on a CD. It was interesting, to say the least, to revisit what I have written here. I have nearly 200 pages of written material now. I was genuinely surprised to see just how far I have progressed over the last year. My bad days are few and far between now, although they still sneak up on me. I am glad I have a place to sit and write how I feel. I cannot share my feelings verbally to this degree with anyone, even if I pay them good money to listen. I have always had a difficult time expressing how I feel verbally.

Most of my fear now comes from the unknown, especially when it comes to Erik's future health. I have learned to take one day at a time in that regard and enjoy my moments with him as fully as humanly possible. I can also do nothing in terms of predicting what his level of functioning will be at this point except for hope for the best and attempt to teach him the best I know how. This requires a great deal more creativity than I anticipated in terms of helping him understand the world. I imagine it's hard for some people looking at my life and reading how I feel to understand why I write what I do. I can't describe how difficult it is to simply enjoy things like most mothers when I am being instructed how to teach my child to speak by speech pathologists, how to walk by physical therapists, and how to eat, dress, and even play by occupational therapists. Erik and I are both being evaluated and scored. The truth is, this has simply sucked a lot of the normal out of being a mother. No, I don't enjoy things like most mothers. I never will. However, I feel less and less sorry for myself as time passes. Why? What I discovered long ago is that I actually treasure each smile, word, step, and accomplishment more than most mothers ever will. Watching Erik reach each milestone is simply extraordinary, creating in me a first-man-on-the-moon-type of feeling in my heart, releasing a thousand butterflies in my stomach, and making me feel I could easily walk on air.

I remember being pregnant with Erik and driving home from the hospital after we found out we were going to have a boy. I have always wanted a son, and even though I was alone in the car, I actually said out loud, "God, I'm not worthy of this!" I had tears running down my face, and I was the happiest girl on the planet. I wanted to fall to my knees. At that moment, I was imagining a very different life for our family than the one we live now. I had no idea where Erik would take me and how many wonderful people he would bring to me. Despite all of the challenges that we face, I still feel the same way every day. I'm incredibly blessed to know this little boy, and it's a true honor to be his mother. I'm still not close to being worthy of such an incredible gift and such gigantic responsibility, but I take great comfort in the fact that I know I am doing my very best.

As Erik would say, "All right! All right!"

Sheesh. Somebody pass the freaking Kleenex.

Today I plan on watching the storm swallow the mountains, and I'll start a batch of chili eventually. You are welcome to join me! I wish you all could.

White Chicken Chili

1 T vegetable oil
1 chopped onion
3 cloves crushed garlic
1 can (4 oz) diced jalapeno peppers
1 can (4 oz) chopped green chiles
2 tsp ground cumin
1 tsp dried oregano
1 tsp ground cayenne pepper
2 (14.5 oz) cans chicken broth
3 cups chopped cooked chicken breast
3 (15 oz) cans white beans
1 cup shredded jack cheese

Heat the oil in a large saucepan over medium-low heat. Slowly cook and stir the onion until tender. Mix in the garlic, jalapeno, green chiles, cumin, oregano, and cayenne. Continue to cook and stir the mixture until tender, about 3 minutes. Mix in the chicken broth, chicken, and white beans. Simmer 15 minutes, stirring occasionally.

Remove the mixture from heat. Stir in the cheese until melted. Serve warm.

(You are what you eat. I like mine hella spicy. You can substitute mild green chiles for the jalapenos to tone it town, if you'd like.)