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?

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....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.

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!

Happy Birthday, Brennan!!!

Today is Brennan's 1st Birthday!!! I honestly can't believe he's a year old already. This has been the fastest year of my life. And while the year has been a quick one, I feel like I have learned more than is possible in just one year. To think that one year ago, I knew absolutely nothing (really absolutely nothing!) about Down syndrome and now I know so much about all aspects of it....as if Down syndrome has always been a part of my life. I have spent countless hours reading books, articles and blogs, have attended conferences, workshops, classes and have been honored to meet many families who are travelling the same path. But, alas, today is supposed to be about Brennan and not about me.

From the day Brennan was born, he has looked directly into my eyes, like he could see straight into my soul. He reassured me that I was the right Mom for him, even when I wasn't sure that I was. I will never forget the first time he smiled at me and the tears I cried as I felt like he was telling me that everything really would be okay. He has such a calming effect on me and on others. My friend, Brooke, once said "if you're ever having a stressful day, all you need to do is hold Brennan and you will immediately feel a sense of calm." Even Eric, who is admittedly not a "baby person" loves getting one on one time with our little man.

Brennan smiles like he means it. He gets the biggest smile when he sees me - as if I'm a long lost friend he is so happily surprised to see. He is adored by his siblings and loves them in return. He can be somewhat shy and reserved around people outside of our family, but at home he just glows. He's the perfect addition to our family and I love him more than I ever thought possible. Happy Birthday to our sweet little ray of sunshine!

Cousins

Eric's sister, Lisa, and her baby, Cameron, came to visit this weekend from California. We had a great visit and were happy to finally meet Cameron. Cameron is just 4 months younger (and 10 pounds heavier!) than Brennan. He's a really happy baby with the best belly laugh.
It was the first time I've seen Brennan really playing with another baby. I caught part of their interaction with both of these teething babies really wanting the teething ring. At first, they were both holding it......

Then, Cameron pulled it toward him - but Brennan wasn't giving up quite so easily (can you see Cameron's displeasure at his cousins actions??)Then Brennan pulled the ring away and Cameron put his hand on Brennan's shoulder as if to say "hey, give that back to me."
It was so cute watching them play. I hope we'll be able to get them together again soon.

World Down Syndrome Day

Who knew? This time last year, I had no idea. But, today is actually World Down Syndrome Day (on 3/21 - since there are 3 copies of the 21st chromosome....cute, huh?). In honor of this day, I wanted to share a couple of videos that I think are important to watch, to think about, and to hopefully share with others. Both have to do with the word "retard/retarded" - otherwise known to me and many other parents of children with special needs as the "R" word. This is a word that I know I have used in the past. I didn't mean any harm by saying it - but I said it. Looking back, I wonder who I may have hurt without even realizing it. I imagine that many of you who use this word and other similar language don't mean any harm, but it is hurtful - so incredibly hurtful. Hurtful to the many people who have intellectual disabilities...and to the people that love them.

In my journey thus far and when envisioning my future with Brennan - the hardest part is the prejudice and ignorance of others that we will encounter. It hurts to my core....a feeling so intense, I've never experienced anything like it. So, please think before you speak. Realize how hurtful words can be. Talk to your kids about it, too. Because the more we know, the better we are. Hopefully each generation will be more caring, more compassionate, more understanding and more accepting than the generation before. We can all do our part in eliminating hurtful and demeaning language and making this world a better place for ALL people.

Hello Spring!!

A few pictures as we say a fond farewell to winter.......