Posted by Rosie Reeves on January 26, 2015 · Leave a Comment
My child is now on a soccer team. That seems like such a mundane statement, and the driving to and from games and the extra strain to find time to do homework and make dinner is wearing me out. But in the middle of it all I try to take a moment to remember that the fact that she is on a soccer team is not mundane at all – in fact, it is almost miraculous! Doctors told us she might never walk or talk, and yet there she is up and down the field, calling to her teammates. Yes, her legs might be a bit more stiff than the other girls and yes, sometimes her teammates don’t exactly understand what she is saying but for the most part she is just another girl on the team. She is ecstatic when they win and sullen when they lose, just like all the other girls. At one point my baby was labeled “failure to thrive” and the doctor started strongly suggesting a feeding tube. We resisted and worked on finding another answer.
This year at her annual checkup I got a lecture about how much weight she has gained the past year.
When we first got her diagnosis and grim predictions for her future I remember telling my family that I couldn’t allow myself to be upset about a future that might never happen – I had infant twins in my care, plus their toddler big brother. I was buried in diapers, feedings, laundry and medicine schedules. I was too tired to be upset. I had no choice but to take it one moment at a time. Of course I wanted to crawl under a rock, but babies have a way of demanding things, like food and attention and clean clothes.
If you have a newly diagnosed special needs child I am not saying don’t worry, everything will be fine. But I am saying to listen to your doctors, do your research, find support and take it one moment at a time – one bottle, one Sesame Street song or one load of laundry at a time.
Photo credit: Bradley Dean; CC license