Wednesday, April 29, 2009

Susan Boyle

I'm sure you've all heard of Susan Boyle by now. Her performance on the show Britain's Got Talent shocked and inspired. She has a beautiful voice and she is getting much deserved recognition. Her story reinforces the saying "you can't judge a book by its cover." This saying has been magnified in my life by Brennan. I know that with Down syndrome come many stereotypes - both good and bad. I know that throughout his life, people will pass judgement or think they know something about him simply by looking at him. One of my biggest hopes for Brennan is that people will take the time to get to know him. And through getting to know him, will see that he is so much more than his diagnosis. That he is a person with his own unique personality, interests and talents. So, thank you Susan Boyle for helping to open peoples eyes and hearts.

Monday, April 27, 2009

Jenna and Down Syn-Drum

Last week, I took the kids to the Y for swimming lessons. On the way into the lesson, we saw a gentleman with Ds who works there. We stopped to say "hello" and the gentleman said "hi" then leaned down to say "hi" to Brennan in his stroller. He asked how old Brennan was, asked his name, and commented on how cute he was. We had to cut our conversation short since Jenna and Tanner's class was about to start. As we were walking away, Jenna said "Does he have the same thing Brennan has?" I was surprised that she made this connection since she hadn't met any adults with Ds before. She said she knew because people with Down syndrome (which she pronounces "down syn-drum") sometimes look similar. We had been to a playgroup for kids with Down syndrome the weekend before, so I asked Jenna if she had been able to tell which kids had Ds when we were there. She said that sometimes she could...except for Brennan, because according to Jenna, "Brennan doesn't look like he has Down syn-drum." He actually does - but to Jenna, he just looks like her little brother (who she likes to say looks just like she did when she was a baby!).

Friday, April 17, 2009

Quite a Month

In the past month, Brennan has:

moved from his infant carrier into a big boy car seat,

gotten his first tooth,

gotten his first haircut
(compliments of my mom, who agreed that his comb-over was in serious need of a trim)

and perfected his pirate imitation.

He has also been to the cardiologist, otolaryngologist, opthamologist and pediatrician and has gotten the "all-clear" from each of them. Quite a month for our little guy, don't you think?

Wednesday, April 15, 2009

Boston Globe Magazine

A couple of months ago, there was an article about Down syndrome in the Sunday edition of the Boston Globe Magazine. The article was primarily about the choices families are faced with as a result of prenatal testing. Two families in the article received prenatal Down syndrome diagnoses - one family had their baby and the other aborted. Since reading this article, I haven't been able to get this one sentence out of my mind: "Women and their partners use (prenatal) testing so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges, or so that they can end the pregnancy." I re-read that sentence several times and became more upset each time I read it. Profound medical, cognitive and behavioral challenges???? There are so many things wrong with this statement. The only part that is accurate is that of cognitive challenges.....yes, all children with Down syndrome will have some degree of intellectual impairment. Otherwise, there is nothing that ALL people with Down syndrome will have. Some will have health challenges, some will not. Some will have behavioral challenges, some will not.

While I was reading this article, I thought about the thousands of people without any personal knowledge of Down syndrome who, after reading this article, would define people with Down syndrome as having "profound medical, cognitive and behavioral challenges." What is also disturbing is that the Doctor who wrote this article is an Obstetrician who works specifically with "complex pregnancies including those with Down syndrome." He says he tries "to be informative, supportive, and non-directive" with his patients as they make their decision whether to continue or terminate their pregnancies. Based on this article, I find that impossible to believe. Indeed, there is much work to be done to educate people, especially those in the medical profession, on the facts about Down syndrome.

Beverly Beckham, grandmother extraordinaire, describes her reaction to the article here and echoes my thoughts and feelings completely.

Friday, April 3, 2009

A Great Big WOO HOO!

In Brennan's first few days of life, an EKG and echocardiogram were performed as part of the protocol for babies with Down syndrome. I remember the doctors telling us that they saw a couple of defects, but nothing that needed immediate attention. They said these defects may correct on their own, but should be watched over time. So, when he was about 2 months old, we went for a follow-up EKG and echocardiogram and found that the two defects were still present. I admit to being a bad mom and not taking notes or even remembering the terminology or details of the nice little picture the cardiologist drew of Brennan's heart to explain the defects. I heard the words "nothing to worry about right now - come back when he's a year old" and that was it.

So, yesterday was the one year follow-up appointment. This appointment has been in the back (and sometimes the front) of my mind for the past 10 months. I often wondered if these defects were getting worse instead of better. I wondered if he would end up needing surgery. I wondered if these heart issues were contributing to his slow weight gain.
With a healthy dose of anxiety, we arrive at Boston Children's Hospital for an EKG and sedated echocardiogram. The doctor came in and explained (again - since I hadn't paid attention the first time) what defects were initially detected....a VSD and a PDA. She then took a good long listen to Brennan's heart, looked at me with a bit of surprise and said that she didn't hear ANY murmurs (or whatever else she was listening for). From this, she concluded that the echocardiogram would probably not be necessary. She called in the chief of pediatric cardiology who also had a good long listen to Brennan's heart and said "It sounds PERFECT." Could more beautiful words have ever been spoken??? It was the best news possible. Brennan was pretty happy with the news, too and smiled at every doctor, nurse and assistant that came into his room. What a perfect day!