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.