This idea was suggested to me by Jenny at Our Little Chilli Tribe. I haven't been able to stop thinking about it since she suggested it. It has been interesting for me to look back at the time Beth was born. I kept journals myself growing up and into adulthood, plus wrote journals for my girls as they were growing up. Friends they had, when they first learned to ride their bikes, schools they attended, favorite teachers, pets, etc. I've gone back through those and honestly, I'm shocked at the way I thought about things. The way I viewed Down Syndrome. Please keep in mind the "R" word was widely accepted back in the early '80s' I don't use it in anger. In some ways, it's heartbreaking that 'that' word does in fact describe my precious daughter.
March 30, 1985
Beth was 5 months old
When I write or say those two words, Down Syndrome, it's like I'm in a fog. They don't mean that much to me. I mean, it's like it hasn't really hit me yet. See, everyone keeps telling me that I'm handling it so well. I think maybe the reason is because I block out 'mentally retarded' and substitute 'Down Syndrome'. Down Syndrome is nothing big; so she'll be slower when it comes to sitting up. We're all not good at something.
When I tell people she has Down Syndrome, I think of her being physically slow but mentally normal. She'll be exactly like you and me, just take longer to tie her shoes. She'll graduate from high school, just one year behind. I don't think about her drooling or throwing her food or screaming; I can't picture her not understanding me when I say, "We're crossing the street, take my hand."
I don't know, maybe she won't be severely retarded. One thing I do know is that I just don't think about it. She's not 'retarded' she's 'Downs'. She's not going to embarrass us in public, she'll just look a little different. Other kids won't tease her, she won't be stubborn. She'll be absolutely normal only she'll have this label cause of the shape of her eyes. Like someone who is left handed, Beth is Downs.
I so remember feeling that way! Looking back now my guess is I just had no clue what to expect. We didn't know anyone who had Ds. At 5 months old, Beth was just a baby! My baby! My love for her was undescribable. To imagine what she would be like in 10, 15, or 20 years was way beyond my imagination. It's easier to handle one day at a time. Thank goodness because that's the way life happens. Beth isn't 'absolutely normal'. Other kids have teased her. She doesn't throw her food because as a toddler, she got in trouble when she did. But each of these happened one day at a time and we handled them one day, one thing at a time.
Remember when I wrote about the family we saw at the mall? Their daughter was 23 months old and running, jumping and going crazy! It wasn't until the next day I remembered Beth didn't learn to walk until 24 months and certainly wasn't running and jumping for a couple months after that. I had a fleeting thought about Ackleesia walking sooner than Beth. That was it! Then I turned to wash the dishes or take out the trash or whatever. Turned to live my life. It does get easier. Those expectations, those time tables the world puts on us (or do we put them on ourselves?) eventually fade away to the joys and sorrows of life.
Oh and to let you know, Beth does embarrass us in public. I hate it when it happens. When she spills food on her shirt, or puts her hand down her skirt to remove a wedgy. (How do you spell wedgy? Is that a word?) Anyway, it happens. I used to think it happened because she has Down Syndrome. Wrong! It happens to all of us! It happens because she's a person! So we wipe her shirt or tell her to wipe her shirt. I frown and whisper to her to 'get your hand out!!' Then we head to the music store or Penneys or wherever. Secretly I'm wishing we could ALL just pull out that wedgie when it happens!! Better than doin' that wedgie strut thinking no one notices!! :)
But ya know, if I could talk to that scared mom all those years ago, I'd tell her not to sweat it. Your daughter is your daughter, period. Every parent is embarrassed by their children at some point! Not everything happens because of the Down Syndrome. Most of the time it's just because she's a kid. The important thing is don't take things so seriously. Lighten up, relax.
It's going to be okay.