Yesterday you had a routine well-check at the Waisman Center across the street from your hospital room window. In the snow, we
walked ran you over for a long overdue appointment. I was unaware of my fragile emotions until they began to ask questions about behavior and development. And it happened…
You see ever since we learned that you would eventually get leukemia, our world stopped. Not everyone gets to see it coming, but we did. My focus shifted from the small part of your life that is Down syndrome to helping you fight cancer. Eventually, I admit, I sort of forgot that you had Down syndrome. Tina the speech therapist told me today that this isn’t a bad thing. “That’s how it should be,” she said. I agree.
But your appointment crashed into me like a thousand waves hitting the shore. Out of no where I was confronted with emotions that I was unable to control. “What can she not do?” “What do you feel are her set backs?” “How is her behavior?” “The results from her hearing test aren’t great…” Like I was learning you had Down syndrome for the first time, all I felt were limitations. Even though they said you were developing great and that they were impressed with your gains, somewhere deep in my heart I felt a lingering ache. Where was this coming from, and why couldn’t I let it go?
Tessa, today I still cannot answer those questions. But I do not need to either. Sometimes there are so many expectations, suggestions and recommendations for your care. Sometimes it is easy to get sucked into the “should be’s” and “not yet’s” and “may never’s”. Some of it comes from specialists and some of it comes from me. Am I doing enough? What can I do different? There can be so much pressure to have you meet your milestones. There are specialists, (Lord are there specialists), therapists, doctors, etc. all contributing to you growing. But the thing that I think everyone forgets about is that you are a just a kid. You are a toddler who needs to just be a toddler, too. It is my job as your mom to draw the line between being a kid and letting “suggestions” dictate your life, and I just hope that I am doing a good enough job of that.
Just know that it is okay to slow down. It is just fine if you take your time. Don’t rush, my dear. Be a kid. Run, skip, throw a tantrum now and then. Keep us on our toes, but please don’t ever feel that you have to live according to the expectations of others. You are doing just fine where you are. You always will be.
For the record, today you sat through scheduled work time twice to complete several different tasks. You climbed stairs for the first time in months and you figured out how to come down them. You fed yourself with a spoon during lunch. You drank from a big kid cup, too! You also rode a trike down the halls of our floor and to the elevator. You sat straight through your second movie at the theater. And this week, you got yourself a super best friend named Bitty!
You are finishing up your last round of your induction phase of treatment! You are doing so great! As long as things continue to go well, (dare I say) you will be done soon!