Monday, October 12, 2009
Like almost half of babies with Down syndrome, Drew was born with a heart defect. Sometimes these congenital heart defects are minor ones, like a small hole, or slightly leaky valve, and they remedy themselves or can be managed with medication. Sometimes though, they are more serious. Drew’s was serious. He had what is known as a complete AV (atrioventricular) canal defect. To put it simply, Drew had a huge hole in the center of his heart. Instead of four separate chambers, he had one. His oxygenated blood mixed with the non-oxygenated blood. By the time he was one month old he had started to go into congestive heart failure. He was a very, very sick baby. He was hospitalized 7 times before he had his open heart surgery on March 5th, 2008. He was 5 months old at the time. I’m sure I don’t need to describe to you the kind of fear this causes. Any of you parents who haven’t been through something like this feel an ache in your chest just thinking about it. Those of you who have faced losing your child know first-hand. Birthdays are extra special when you’ve faced the possibility of your baby not having one; they are most definitely a reason to celebrate.
Thursday, October 8, 2009
so this is what was in that big box from Nana and Papa - YAY!
ok... now what?
BALLOONS!! MY FAVORITE!
All the way from Alaska, Nana & Papa must love me a lot!
Ride 'em moose-boy!
I needed a little help here...
Thanks Buh-buh (brother)
Happy Birthday to me, Happy Birthday to me...
Sunday, October 4, 2009
I started this blog as a way to share my family - to share Drew. It was my hope that it would bring some awareness to others that our lives are not so different from families whose children do not have an extra chromosome, that my child is not so different either. I have not been very good about keeping up with it, obviously; seeing as how this is my first post in months. No apologies though. I have been busy taking care of the real world, my children, my family, my home; I will never apologize for that. It being October, and October being Down syndrome Awareness Month I did decide now was the time to make the effort. I won’t commit to posting 31 for 21 though; heck I’ll be happy with myself if I can get 3 up.
I will be the first to admit that I am no activist. Most of the time I lean more towards being a pacifist. There are times I feel guilty about this, like I should be doing more to educate people about Down syndrome, to bring “awareness”. While I am (almost) always willing to inform the uninformed when I come across them, I don’t exactly seek out the opportunity. The truth is I am not the most educated parent of a child with Down syndrome either. I know enough to keep on top of my son’s health and development, but I am certainly no expert.
1. lack of knowledge: lack of knowledge or education
2. unawareness: unawareness of something, often of something important
(definition from MSN Encarta)
We didn’t know that Drew had Down syndrome until after he was born. I guess you could say we were “unaware of something important”. We certainly lacked knowledge and education, not just about what Down syndrome is, but about how it would affect our family.
In the two years since Drew was born I have come across quite a few ignorant people. Some so profoundly ignorant that it truly shocked me. Like the hair stylist I came across not too long ago who thought Down syndrome was caused by a mother who “took drugs or something”, or the well-meaning elderly man who informed me that “Down’s kids are so happy and sweet, they’re like angels”. (really? wanna see how angelic he is while I try to change his poopy diaper? ) I usually do not take these comments personally; these people aren’t mean, just ignorant. So in the spirit of education and awareness here is some information for those of you who are currently unaware of what Down syndrome is (and isn’t).
- Down syndrome occurs when a person receives three copies of the 21st chromosome instead of the typical two. This happens at conception (or shortly thereafter depending on the type).
- There are three recognized types of Down syndrome. Trisomy 21, Mosiacism, and Translocation. Trisomy 21 is the most common; about 95% of people with Down syndrome have this type.
- Approximately 1 in every 733 babies is born with Down syndrome.
- While the probability of having a child with Down syndrome increases with maternal age; most babies with Down syndrome are born to mothers under the age of 35.
- Current research shows Down syndrome is not caused by parental behavior or environmental factors.
- People with Down syndrome are born to parents of every race and social and economic background.
- Down syndrome is associated with some physical traits. The most common are an upward slant to the eyes, low muscle tone, short stature, a single crease across the palm and a larger than average space between the big and second toes.
- People with Down syndrome are at a higher risk for certain medical conditions, some of the most common are congenital heart defects, gastro-esophageal reflux disease, respiratory and hearing problems, childhood leukemia, and thyroid dysfunctions.
- Down syndrome does cause cognitive delays, but the effects are usually mild to moderate and vary depending on the individual.
- People with Down syndrome are individuals and possess the same differences and similarities of personality and temperament as those people without Down syndrome.
1. knowing something: having knowledge of something from having observed it or been told about it2. noticing or realizing something: knowing that something exists because you notice it or realize that it is happening
3. knowledgeable: well-informed about what is going on in the world or about the latest developments in a sphere of activity
(definition from MSN Encarta)
The facts listed above provide some knowledge. They help to dispel some of the misconceptions about Down syndrome; but does posting a list of facts really help increase awareness? Am I reaching anyone who wasn’t already aware? I think that true awareness comes with experience. I know for me that having a child with Down syndrome is what caused me to become aware. Were it not for Drew I wouldn’t have a clue, so how can I help others who are not as blessed as I to become aware? I can share my story, my child, with others. Drew will help to increase awareness just by being his wonderful little self. Everyone he meets will be able to see that he is loved, accepted, cherished. Hopefully they will also see that he is neither a “lump” nor an “angel”, but a human being with a unique personality; and that he not only has a place in this world but something positive to offer it.
If you would like to learn more about Down syndrome please visit one of the links I have listed in “Good Links for Information”; or visit one of my bloggy friends from my “Blogs I Like” list.