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.
Thursday, June 25, 2009
...maybe too much has happened since I posted last. Changes not only with Drew, but the rest of my family as well. I'm not even sure where to start. I suppose that's what happens when you procrastinate for so long. I'll try to break it down into manageable parts and to keep it brief (please keep in mind that "brief" for me is a very relative term).
What Drew can do..
Drew is still using army crawling as his main means of transport. Why change something that works so well? If he can scoot away from diaper changes and medicine time and catch the cat, then why rock the boat? He does still get up on all fours - because he knows everyone will cheer when he does. Such the ham my little Drew is. His secondary means of transport is the butt-scoot (or should I have said "hiney"? oops) He has finally learned to push himself up into a sit - yay! Once there he will scoot backwards on his bottom all over the place - it is absolutely hilarious! He looks like a dog itching his behind except he goes backwards. This worries me a little because he doesn't look where he is going and there have been some accidents, but I guess bumps and bruises are just part of growing up. He also learned to pull up onto furniture into a stand. All by himself! Of course he fell a couple times and now he won't do it anymore.
Drew's other new accomplishment is stacking two blocks. This may not sound like much but trust me when I tell you this is HUGE! I'm such a proud mama! Some very good news is that Drew's GI doc is pleased with his eating progress (drinking is still slow but progressing) and has cut back on the "tube-food". She also discontinued his Reglan (the drug he was taking to help empty his stomach) - and so far he is doing great. Last, but certainly not least, Drew has his first word! His first word is "bubba" which is what we call his big brother. "Bubba" is quite pleased of course and hasn't stopped gloating yet.
Drew has also had a number of other firsts these past 2 months - sadly I cannot post pictures as a freak accident with a digital picture key-chain has COMPLETELY fried my laptop and all the new pics I was fiddling with at the time. The "geek squad" is currently attempting to retrieve said pics but no promises. Yes, I know I should save to a back-up device before fiddling. Trust me, I won't forget again.
My parents are moving to Alaska :( Unfortunately that is the only place my father could find a job worthy of him. I have never lived more than 5 minutes away from them so I am having a tough time with this. My husband Paul left for his military welding/sheet metal school in Virginia on May 4th. He is doing very well and getting good grades. Of course. I miss him very much :( About a month before he left we found out...
... I'm pregnant. Almost 19 weeks now. No, it wasn't planned. I was not very pleased at first - of course the throwing up all day long every day didn't help with that - but I am in a pretty good place now and even starting to enjoy it, although I am a bit lonely. I still worry about how I will handle an infant and a toddler and a teenager too, especially since Drew still needs the feeding tube, therapy, doctor visits etc. but I know that lots of others have navigated these waters and lived to tell, so I have faith that I can too.
What if this baby has Down syndrome too? you ask. What if it does? I know now that it's not the end of the world - its the beginning of one. Not to say that I'm not hoping for a little bundle with your typical number of chromosomes. I admit I am. The health nightmares that Drew has had to face and the obstacles he will have to face later in life are not something I would choose for my child. Mostly I just hope that this baby is healthy no matter how many chromosomes. Oh and it would be nice if it could be a girl this time! :)
Thursday, April 2, 2009
Going to the grocery store with Drew in tow can be an adventure. There are usually looks of curiosity, and often questions, the tube in his nose does not help with this of course. I don’t usually mind at all, though sometimes I would just rather not engage. I, like everyone, have my days where I don’t want to be “on”, days where I would rather zone out on the trashy magazine headlines and not speak except to say “debit” and “thank you, you have a great day too”. Yesterday was one of those of days for me. As I filled my cart up with items carefully tucked around the car seat with the sleeping baby, I had more than one stranger approach me. I tried to avert, and it worked for most. A smile, a “how cute” “why thank you” and then on I rolled. Then there was the elderly gentleman who said, “what a precious gift you have” “yes I know, thank you” I replied. He was my favorite. He didn’t even have that look of curiosity on his face about the tube. He seemed genuinely happy to just see a mother with her baby. We exchanged just a few more words, I would have chatted longer but I really wasn’t in the mood. On I rolled to the check-out line, which one is shorter? Which one has fewer kids? (they ask more questions as we all know :) ). I chose my line, behind a very bachelor-looking man buying a lot of steak and some beer. “Almost out of here” I thought. Then it was my turn, and the cashier asked “What is that tube for?” Awwwwwww MAN! I almost made it! “Well, its a feeding tube" I said and then because she looked a little confused I went on to say "He was born with a heart defect and couldn’t eat for the first 6 months of his life, so he forgot how to suck and can’t take a bottle. He’s learning to eat now and is doing very well, but it takes time and hard work.” I mentioned the open heart surgery and what a trooper Drew is, and she asked “So, he’ll have a normal life then?”….um…… I didn’t know what to say. She wasn’t trying to be rude, I know, but I was floored. I hadn’t mentioned Drew’s having Down syndrome. I’m not sure why, I just know I didn’t feel like talking at all, so I guess I was just trying to give the least amount of info that was necessary. “Well” I said “Drew has Down syndrome, so I guess he’ll have as normal a life as is possible” I then went on to say “Whatever normal is. Does normal even exist?” I guess I could have just said “yes, of course he’ll have a normal life” but I didn’t. I could have used this oppurtunity to educate, but I was tired and crabby and distracted and I didn't. As I left though I regretted my words a bit, I felt a little like I'd sold Drew short and I couldn't stop thinking about it.....
Will Drew have a normal life? What is normal? If normal is getting to nurse or drink from a bottle, then Drew hasn’t had a normal life. If normal is only being in the hospital a day or two after you’re born, then Drew hasn’t had a normal life. Is it normal to throw up all your food at least once a day, eat through a tube, have open heart surgery, spend more than half of your first 6 months of life in the hospital, have hundreds of doctors appointments, take 4 different medications and have 3 different therapists, well, no. I don’t think most people would consider that normal. But if normal is having a brother, and a father, and a mother, and grandparents, aunts, uncles, cousins and family friends who love you, then Drew’s life is sooooo normal. If normal is learning new things, (at your own pace of course), being curious about the world, smiling when you're happy and crying when you're sad, then Drew has a normal life.
The more I thought about it, the more I realized just how normal Drew’s life is. How normal it will be. There is actually very little of the “normal” we expect for our children that Drew won’t have. Drew will learn to eat, he’ll learn to walk, he’ll learn to talk, either with sign language or verbally (or both if I have any say in it). He’ll color on the walls, yell at his brother, refuse to take a bath. He’ll push the limits, he’ll get into trouble. He’ll read stories with his mom, play soccer with his brother, and go on fishing trips with his dad. He will go to school, he’ll have friends, he’ll get teased, he might tease others. He’ll have his favorite subjects, and his least favorite. He’ll have his favorite teachers, and his least favorite. He’ll play sports. He may not be the best player on the team, but that’s normal. As he grows he’ll have crushes, he’ll get his heart broken, and maybe even break a heart himself. He’ll go to a school dance, a football game, he’ll graduate. More than likely he’ll have a job, some days he’ll enjoy it, some days he won’t. He’ll have days when the world treats him well, and days when it doesn’t. These things are all normal. Someday I think he’ll find a wonderful girl, fall in love, yes, he could even get married. Perhaps I am naïve, but I think he’s got just as good a chance at making a go of it as anyone else really. Will he be able to take care of himself all on his own? Maybe not, but how many of us can get by in life without ANY help at all? Will he have children? Well, no, that would be very unlikely, but lots of people don’t have children. I'm pretty sure he won’t become a doctor or a lawyer or a professional ball player either, but then most “normal” people don’t. All in all, I realize, Drew will have far more “normal” in his life than not.
Friday, March 27, 2009
So far mom hasn't taken me up on any of my offers, she just shakes her head and says I am "mischievous". I don't know what that means but I think it must be good because she always smiles when she says it.
In these past few months I have also been working very hard on my eating, and I can even sip thick liquids without spitting them back out on accident (I sometimes do it on purpose though, just because its fun). I am also getting up on all fours and rocking back and forth. Sometimes I scoot backwards, which is okay. I'll keep working on the forward. I also can stand with help now, it still feels weird but my therapist says it will get better. I still don't really like to hang out with anyone but my mom. She calls it "separation anxiety" I call it good taste :)
Well, that's it for now... I have a kitty to go chase
Tuesday, January 13, 2009
In an attempt to cheer myself up; I decided to take on a project. Why I thought it would cheer me up to try and figure out how to create a slide-show by myself and then somehow get it onto my blog I do not know. Perhaps I was more focused on the end result than on the inevitable frustrations involved in getting to the end result. Not necessarily a bad thing I guess.
I felt I needed to do something to share the lighter side of things. One of the most important things I have learned in my lifetime (so far) is the power of laughter. As parents in general, and parents of children with special needs in particular I think we have a tendency to take ourselves a little too seriously. Not to say that we shouldn't take parenting, or our children's struggles seriously; but there is always room for laughter. I think one of the best lessons I can teach my children is the importance of finding the fun in every single day, even the "bad days". Laughter is like a band-aid for a bad day.
So here it is... my blog's first slide show. It's entitled "Ode to Laughter", and is just a collection of pictures that have the power to make me smile. enjoy.
Tuesday, January 6, 2009
I hung up the phone feeling deflated. I feel like I've let my baby down, like I haven't done enough, pushed him hard enough. I think for me this is the thing I struggle with the most. I am not a go-go-go high energy person. I am naturally laid back, not pushy, not assertive. With my first child I did not have to work so hard, he did just fine. For Drew I have had to learn to be someone I'm not with doctors, nurses, even strangers. I've had to question, confront and advocate for my son. Now it seems I have not done enough. I haven't met the goals I've set for myself either, to be the best mother to Drew that I can be, to be the mother he deserves. I know our kids don't come with an instruction manual, but it seemed so easy with my first child, Tony, (so far) that its especially difficult for me to accept that I'm not a "natural" at parenting Drew as well. I really dislike feeling so negative and may not even publish this, but then, I committed to sharing the whole story so.... maybe I have an obligation to let others know that it's not all roses and rainbows. So, yep, sometimes I get down. Sometimes its thorns and rain.