"As one grows with the child and as the trip of life is unfolded, the special features become part of a collection of goodness and personalness that are your new child. When you reflect you can identify that that 47th chromosome has indeed made a difference but in the sum this difference has made an extraordinary human and someone for whom you could not have realized or anticipated the happiness and strengths that will be seen and felt. Parents tell me again and again how they have been unexpectedly rewarded and blessed by seeing with new vision. These babies have an unparalleled set of personal features that take us with them, open our eyes and fill our hearts. Perhaps one of the most profound experiences of a special parenthood is coming to realize that your old perceptions were too limited and that there is much waiting to be embraced. That extra chromosome becomes a ticket to some new warmth and features that change lives and change them well."
This quote from Dr. Allen C. Crocker was posted by fellow mom, Heather, on an online Down syndrome board that I frequent. It was taken from the DVD "Down Syndrome: The First 18 Months" where Dr. Crocker was discussing his thoughts about raising a child with Down syndrome. I have read and re-read this quote countless times. It is so beautiful, so warm, so heartfelt and I believe each word completely.
Dr. Crocker graduated from medical school in 1948 and has worked with children with developmental disabilities for his entire career. He has advocated tirelessly with the goal of bettering the lives of ALL children. He was instrumental in setting up the Down Syndrome Clinic at Children's Hospital in Boston and has been very active with the Massachusetts Down Syndrome Congress, among numerous other outstanding achievements. Eric and I were fortunate to be able to take Brennan to meet Dr. Crocker when Brennan was just a few weeks old. He was the most caring and optimistic doctor I have ever met. He spoke to us as if we had just won the lottery by having Brennan in our lives. Not a negative word was spoken - which was in great contrast to our experience with other doctors up to that point. Although I was still in a new baby/new diagnosis fog, I remember leaving that meeting feeling encouraged and thinking that maybe Dr. Crocker knew something that I didn't. He helped me start to see our future in a brighter light. As we saying our goodbyes, he leaned down and kissed Brennan on the forehead. It was the most touching moment. What a dear man who has done so much for so many children and their families.
Monday, September 21, 2009
Friday, September 18, 2009
Thursday, September 17, 2009
The Day After
The morning after my pity party, I was still feeling down. At 9:00 that morning, Brennan's developmental specialist arrived unexpectedly. Between her vacations and our vacations we hadn't seen eachother in a few weeks and hadn't scheduled that day's appointment. I was not exactly in the mood for one of Brennan's therapy sessions that morning, but figured we should go ahead with the visit since she was already at our house. And I was SO glad we did. Since she hadn't seen Brennan in a few weeks, she was constantly pointing out all the things he had learned, all the things he was able to do now that he wasn't doing just a few weeks ago. Brennan loves his developmental specialist and was full of smiles and laughs while he showed off his new skills. It was exactly what I needed to get myself back on the right track and focusing on the many positives instead of getting stuck on the negatives. Soon after Brennan's therapist left, I received these from my very thoughtful husband, which also really helped to brighten my day!
We're definitely back on the right track, working on the straw (among many other things) and knowing that he will get it....it just takes time and patience.
We're definitely back on the right track, working on the straw (among many other things) and knowing that he will get it....it just takes time and patience.
Tuesday, September 15, 2009
A Bad Day
Last week I took Jenna to meet her 1st grade teacher in anticipation of the start of school. I found myself holding back tears while we were at the school. But, the tears weren't for Jenna - they were for Brennan. I feel confident that Jenna will like 1st grade, that she will learn and make new friends. I feel the same about Tanner and Parker. But Brennan? I'm not so sure. I honestly can't imagine sending him off to school. Will he like being at school? Will he be able to tell me if he doesn't? Will he be accepted by his peers and their parents? It feels so safe having him home with me where I can care for him, protect him, make sure his needs are met and that he is happy. To send him to school where someone else will be responsible for him seems unimaginable.
After we visited Jenna's school, we were out with a group of kids. Brennan was enthralled with the amount of activity and watching intently with his mouth hanging open, as he sometimes does. One of the kids looked at him and started laughing saying "look at the baby's mouth." He went on and on, laughing and laughing, saying "look at him, look at the baby, look at his mouth." I said something about Brennan being so in awe of all the excitement, that I thought he was probably trying to say "wow" or something like that. I didn't want to make a big deal out of it as I don't think the child was being mean spirited. I think he just noticed something that seemed different about the wat Brennan looked at that moment, found humor in it and wanted to point it out to his friends. It may not sound like a big deal, but it broke my heart. It was the first time that a child has made fun of Brennan for something that Brennan has absolutely no control of and it made me feel terrible. Really terrible.
When we came home that night, I was feeding Brennan and working on helping him drink from the straw cup and just started crying. We've been working on the straw every day for weeks and occasionally for weeks before that and he still doesn't get it. I put the straw in his mouth, wait for him to close his lips, then squirt some liquid into his mouth. The theory is that at some point he will learn that he needs to suck in order for the liquid to come out of the straw. But that hasn't happened. He just hasn't gotten the hang of it and I'm feeling so frustrated. I want so badly to be done breastfeeding, but obviously can't until he can get enough liquids from another source. I feel like I need a break - a few days away without the kids - and I just don't know when that will happen if I can't wean him. There are many other skills that we've been working on for much longer than the straw, but the straw is the only one that causes me frustration because it directly affects me and my ability (or inability) to have a much needed weekend for myself.
Basically, I had a big 'ol pity party for myself that night. I cried and cried and cried. I haven't had a night like that since Brennan was a couple of months old. So, maybe I was due.
After we visited Jenna's school, we were out with a group of kids. Brennan was enthralled with the amount of activity and watching intently with his mouth hanging open, as he sometimes does. One of the kids looked at him and started laughing saying "look at the baby's mouth." He went on and on, laughing and laughing, saying "look at him, look at the baby, look at his mouth." I said something about Brennan being so in awe of all the excitement, that I thought he was probably trying to say "wow" or something like that. I didn't want to make a big deal out of it as I don't think the child was being mean spirited. I think he just noticed something that seemed different about the wat Brennan looked at that moment, found humor in it and wanted to point it out to his friends. It may not sound like a big deal, but it broke my heart. It was the first time that a child has made fun of Brennan for something that Brennan has absolutely no control of and it made me feel terrible. Really terrible.
When we came home that night, I was feeding Brennan and working on helping him drink from the straw cup and just started crying. We've been working on the straw every day for weeks and occasionally for weeks before that and he still doesn't get it. I put the straw in his mouth, wait for him to close his lips, then squirt some liquid into his mouth. The theory is that at some point he will learn that he needs to suck in order for the liquid to come out of the straw. But that hasn't happened. He just hasn't gotten the hang of it and I'm feeling so frustrated. I want so badly to be done breastfeeding, but obviously can't until he can get enough liquids from another source. I feel like I need a break - a few days away without the kids - and I just don't know when that will happen if I can't wean him. There are many other skills that we've been working on for much longer than the straw, but the straw is the only one that causes me frustration because it directly affects me and my ability (or inability) to have a much needed weekend for myself.
Basically, I had a big 'ol pity party for myself that night. I cried and cried and cried. I haven't had a night like that since Brennan was a couple of months old. So, maybe I was due.
Friday, September 4, 2009
A Sports Article?
I'm admittedly not a big sports fan, but while doing my daily facebook check, I came across this article that my friend Patty had posted. It's about a father and son and their recent trip to a St. Louis Cardinals game. It is an incredibly touching story and one worth sharing.
Look at Those Teeth!
Here's Brennan showing off his pearly whites!
He got his first tooth when he was 11 months old. The next tooth came a couple of months later and he's been teething ever since....with tooth number 9 currently getting ready to make its appearance. They've all come in rather slowly and look like they'd be really painful, but luckily haven't seemed to bother him much.
He got his first tooth when he was 11 months old. The next tooth came a couple of months later and he's been teething ever since....with tooth number 9 currently getting ready to make its appearance. They've all come in rather slowly and look like they'd be really painful, but luckily haven't seemed to bother him much.
Dave Hingsburger
Most of the blogs I read are blogs of fellow moms of kids with Down syndrome.....with one exception. Almost a year ago, I came across the blog of Dave Hingsburger. He has worked in the field of disabilities for over 30 years and recently became disabled. He has an interesting perspective having been an advocate for others, now being an advocate for himself as well. His posts are;
heartwarming:
http://davehingsburger.blogspot.com/2009/08/shoes.html
heart wrenching:
http://davehingsburger.blogspot.com/2009/08/blog-post.html
thought-provoking:
http://davehingsburger.blogspot.com/2009/08/change-is-due.html
http://davehingsburger.blogspot.com/2009/05/pity.html
inspiring:
http://davehingsburger.blogspot.com/2009/05/kelly.html
He is an amazing advocate for people with disabilities and has a gift for putting his thoughts into words. Stop by his blog once in a while, you'll be glad you did.
heartwarming:
http://davehingsburger.blogspot.com/2009/08/shoes.html
heart wrenching:
http://davehingsburger.blogspot.com/2009/08/blog-post.html
thought-provoking:
http://davehingsburger.blogspot.com/2009/08/change-is-due.html
http://davehingsburger.blogspot.com/2009/05/pity.html
inspiring:
http://davehingsburger.blogspot.com/2009/05/kelly.html
He is an amazing advocate for people with disabilities and has a gift for putting his thoughts into words. Stop by his blog once in a while, you'll be glad you did.
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