What to Expect. . . Now

When Anna was first born, we read the typical baby books and followed along with the 'what to expect' book as she accomplished her very first milestones. But after her diagnosis, we no longer knew what to expect.

The neurologist, pediatrician and therapists all said the same thing, therapy, therapy, therapy. You would think this would come as a relief to me. After all, she didn't have to have invasive surgery or any other kind of procedure and they weren't even suggesting any special therapy treatments. The neurologist made it all seem so normal - just work it into her routine. The pediatrician explained that this was a good time to have a stroke, all things considered, and that a baby's whole life is physical therapy. The way they talked, nothing was really wrong, just delayed.

But for some reason I couldn't wrap this concept around my head. To me, this was a horrible scenario. My baby suffered a stroke inutero and may have trouble for the rest of her life. I felt tremendous guilt, second guessed every day of my pregnancy and Anna's first few months and experienced a lot of self pity. I didn't want to have a child who was different, who had trouble performing what seemed like simple tasks to others or couldn't even do these simple tasks at all. And even though Anna seemed like other children in so many ways - she laughed, smiled, socialized, played - I couldn't focus on that; I just thought the worst.

Plus, I wanted a goal to work toward. I wanted new milestones to aim for. But no one offered new guidelines. This made it worse in my eyes since it seemed to me that maybe the doctors and therapists were holding back on me, that they didn't want to tell me what they feared may be the worst case scenario. So instead of 'no news is good news', no news was a conspiracy of sorts. It seemed to me that they didn't want to be responsible for missed goals or maybe even the possibility that she wouldn't reach some of them at all.

Then May came! We had been doing therapy for about five months at this point and Anna was really making some progress. I had to look back to the prior November in order to talk myself off of a ledge at times (!), but she clearly had made progress. So we decided to keep working at home but subtract one professional session per week from our routine. And we decided to see a new neurologist.

Our 'new' neurologist is a quiet, unassuming man. He spent close to an hour listening to me talk and examining Anna. He was patient with me and sweet with Anna - two qualities our first neurologist lacked. Plus, he had his own practice so we saw him in his office rather than having to go to a large hospital complex - a much more relaxed and less depressing atmosphere. Everytime we entered that hospital, I couldn't believe my happy, beautiful, never even had a cold or ear infection baby had to go where all of these sick people went.

He finally told me what I wanted to hear. Anna's condition was stagnant - she was very healthy, was in no danger of having another stroke and all she could do was get better. And he said what I had been dying to hear for months, she would walk, she would talk, she would feed herself, etc. She would 'recover' it was just going to take time, a lot of time. He also gave me a goal - he said most babies with hemi paresis do not crawl, they go straight to walking. There was no doom and gloom in this statement. It was simply a matter of fact - babies with a partial paralysis of half of their body will walk first - no big deal! And he said that rather than walking between 12 and 15 months, Anna would most likely walk between 18 and 24 months. Another relief. After all, Anna was already 14 months, I could definitely survive, at the most, another 10 months of not walking. Finally! Something to shoot for!

I started to breath again! As I said, we had already cut our professional therapy down to one session per week, and now that Anna was only taking one nap, we changed her at home routine as well. We worked out for a full hour in the morning during Sesame Street. We treated it like an adult would treat an exercise program. Monday through Friday, we worked out in the morning and then incorporated smaller exercises into Anna's daily routines and play time. Then we took a break on the weekends. We still did little things throughout her regular routine and play time but we also just had fun, no longer making every moment about therapy. Whew!

I had finally found a happy medium between a child with special needs and a child who's like everyone else. And I had finally learned to relax and let Anna guide me, not always pushing and worrying. I began to enjoy my daughter's young life and accept it and her for what it was - a little delayed compared to others but still filled with lots of joy, love and, of course, exhaustion!