Potential

“The man who thinks he can and the man who thinks he can’t are both right. Which one are you?” ― Henry Ford

Since Mia was born, I’ve gotten a lot of “How ARE you?”s from well-meaning people. Most of them are social workers or doctors. I was starting to get a complex. Am I not emoting enough? Do I not look okay? Is my shirt inside out or something? Then I read the “Clinical Report – Health Supervision for Children with Down Syndrome” article from the AAP, Pediatrics, August 2011. On the development checklist they are supposed to “Assess the emotional status of parents and intrafamilial relationships” at “all heath visits.” I mean I’m sure they care and all, but it’s a required question like “Are you putting her on her back to sleep?”

My answer is always the same, “I have mostly good days and some bad days, but we’re doing alright for the most part.” I don’t want to sound too positive just in case the doctors start getting suspicious. Is she in denial? The fact is that it’s the truth. I still have some bad days, but the majority of days are just fine. The funny thing is that those bad days are usually right before a doctor’s appointment. It’s kind of like post traumatic stress syndrome. I’m always expecting bad news. I flinch, but have faith.

And so far things with the doctors have been good. Good cardiologist appointments, good pediatrician appointments. She’s a healthy little girl with a small heart murmur who also happens to have Down syndrome, so I get to exhale for a couple months.

Today we had our first visit with the occupational therapist. She assessed little Mia and was very pleased with what she saw. She gave me some really good ideas about some new things to do with her. We’re still working on building those little muscles. We’ll see her again in two weeks.

We have a lot of appointments this week, so I’ve been answering the “How ARE you?” question a lot.

A long time ago, I watched a mom and her daughter on Good Morning America. Her daughter was a 14-year-old virtuoso musician who was the youngest winner of a violin competition. I can’t remember which one off the top of my head. I know it was one of the big ones. I remember even then being really inspired by her story. When her daughter was born, she had an APGAR score of 1. She had to be resuscitated and had multiple problems. The doctors all told her the same thing, “You need to prepare yourself for the fact that this little girl will be severely handicapped and face significant developmental delays. There are a lot of things she may never do.” She left the hospital and decided she had two choices. 1. Give up and accept the “fact” that her daughter had no real future. 2. Give it everything she had and work tirelessly to maximize her daughter’s potential and love her no matter the outcome. She obviously chose number 2.

I’m not telling this story because I believe that Mia is going to be some kind of violin prodigy one day if I make sure she does tummy time. (Although if she wants to take violin lessons I won’t say no.) Her genetics and the Trisomy 21 are powerful barriers. Many parents and children work very hard and gain very little in results. Potential is nurture AND nature. I’m telling this story because it reminds me daily that her potential will NOT be defined by an article from the American Academy of Pediatrics or any doctor’s or well-meaning person’s “worst case scenario.” I won’t make decisions based on the assumption that she “shouldn’t” be able to do it. There are a lot of things humans “shouldn’t” be able to do, but they still seem able to do them.

Potential is a nebulous thing. While I have faith that Mia’s potential is awesome and she will be able to do lots of things a “typical” child can do, I don’t know that for sure. We’re going to work hard and do a lot of praying. I know that I have a lot of preconceived notions about what babies with Down syndrome can and can’t do. Given the fact that Mia has shattered many of these already, I need to work diligently to make sure that my assumptions about her abilities based on fear don’t become self-fulfilling prophecies. The reality is that I don’t assume Fynn can’t do things. Why would I do that to Mia? Down syndrome is unfair enough for Mia. No need to add the insult of a parent who doesn’t believe in her.

So how am I? As determined as ever, thank you very much. Mia has some playtime/working out to do, and Fynn wants to start learning his letter sounds and do some finger painting.

I better make some coffee.