Friday, April 13, 2012

Imaginings of a Normal Day

I wonder . . . what would a normal day be like? A day where Down Syndrome didn't factor into our lives, a day where it wouldn't affect our lives at all. Because as much as I say our life is normal, I also say it's our normal, the normal we are used to because this is our life and this is what we do everyday, it's not really normal. There are so many things we do without thinking that have to do with Down Syndrome. There are so many parts of my day that are intruded into by Down Syndrome. So what would a "normal" day be like? I imagine it would go something like this:

Seth wakes up at 7am without complaint. (never happens)

He dresses himself because he's four and should be able to. (getting Seth dressed is a battle of the ages every morning!)

He sits and drinks his milk and requests what he wants for breakfast. (I'm lucky if I can get him to drink his cup of milk before he throws it on the floor- breakfast doesn't always happen)

He goes outside and waits patiently for his bus to take him to school. (He isn't patient, hates waiting for the bus and if he didn't have DS he wouldn't be going to school at all.)

Seth comes home from school happy and eats a snack and has a drink. (Seth is tired and cranky and clingy when he gets off the bus. He also doesn't want to eat or drink anything for at least two hours after getting home which is a long time since lunch.)

Seth and I go for a walk and he's able to walk ten blocks without stopping or getting tired. (I'm lucky if we make it down the block)

We go to the park and all these stores without complaining from Seth. He's able to express what he wants in the store and he can even hold my hand in the store instead of being confined to the stroller because he knocks everything off the shelves. We go into the library and he picks out a book and we read it together. He can even read a few words out loud. (The reading part is the part I most wish would happen. I so want Seth to have my love of reading, my love of books, my love of learning.)

Seth and I go home, he helps me cook dinner and we all have a nice, peaceful dinner. (Ok so Seth has a fit when I go to cook dinner, he destroys his bedroom and the living room in the time it takes to prepare everything, dinner is 50/50, sometimes he eats, others he refuses to.) Ideally Seth would eat anything given to him but that never, ever happens.

We would read a few bedtimes stories together and Seth would go to bed. No meds, no worries if he ate enough at dinner, no fuss. Seth is really good at bedtime and sleeping so that's no problem. But if he doesn't eat a good dinner he often complains of hunger right at bedtime, thus delaying bedtime at least a half an hour to an hour so he can eat something.

I don't know why I tortured myself writing this. I just wanted an idea of what I thought life without Down Syndrome would be like. Seth probably wouldn't even be in school at this age if it weren't for DS. Or he might be in a daycare program, with me working. There is so much that would be different.

Normal. . . . normal. . . I so want this kind of day. I think when he's older perhaps we will get one. We are making progress with it!!


  1. Hang in there...I'm willing to bet a *lot* of it is age/communication related. He's only 4. SO much will change year to year as he matures and his ability to communicate gets better. (((hugs)))

  2. I agree with Becca, it does get better with age, you will forget this period one day (!). My girl is now starting to dress herself, eat better etc (she is 8, but it did start to get better when she started school at 5 and not pre-school or early intervention).
    It is something I struggle with also, the yearning for 'normal' but also the guilt for yearning it as I love my daughter so much. It is a difficult one to have articulated the angst of such a situation well.

  3. thank you ladies!! That's why I love writing- it helps get it all out, I know I'm not the only one feeling all of this!

  4. Hey I recently bought a book "Down Syndrome Parenting 101" by Natalie Hale (disclaimer - I don't know the author etc ) and found it quite useful. She has a practical and humourous approach to rearing a child with DS. She has what she calls the sandwich method for getting your kids to do things and it really works!! I think it would have been a good book to have when my girl was younger. Cheers, hope Seth is doing ok :-) and you too!!

  5. While it will get better with age, I think that this wouldn't be your life anyway. My oldest is four and doesn't have Ds and she doesn't dress herself and she has at least average fine motor skills. She is also tired and cranky after any time spent away from me (daycare or Grandma's) especially if there has been a lot of stimulation. Also, my second, who has Ds, doesn't do a lot of these things. She is a morning person that wakes regularly at 6 am and wakes happy. She loves books and is clearly interested in learning to read. While she only eats a couple of tablespoons at a time, she will eat pretty much anything I give her (as long as I don't skip her morning banana). She actually usually comes home from school in a fair mood but will be grumpy in anticipation of the bus and going to school. I can relate and even though I don't have sorrow over the Ds, I still wonder what life would be like if the bear cub didn't have it, just like I wonder what it would be like if I had boys or the like. I think it is so hard to separate our child's diagnosis from who they are that we can't know what would change. My youngest is proving me wrong constantly about the assumptions that I made about the bear cub and what comes from that extra chromosome.