Down Syndrome - 24 Years Ago

I was looking through some old books the other day and found one titled Elizabeth Joy. It caught our eye in the store 24 years ago because of the title. My middle name is Joy and our Beth, well her official name is Elizabeth.

Elizabeth Joy is the story of a 2 year old (at the time) girl with Down Syndrome. Beth was two when Chuck bought the book for me for Christmas. I couldn't wait to read it! To read about someone else who was going through the exact same thing as we were?! Amazing!

Remember, no cell phones, no computers, no blogs, email... it was very isolating.

I flipped through the pages the other day and had forgotten that I had highlighted paragraphs that explained exactly what I was going through. The author is from England so her speech is slightly different from American English, plus it was written 26 years ago, before 'people first' language. It surprised me to re-read some of the chapters:

"Strangely, I had never felt I could ask God for a normal baby. I'd always felt He was asking me to be prepared to accept whatever He sent us, as if we were being prepared.... "

"I had really wanted to explain to my friend how I felt about it all. I think she expected me to be devestated. I told her how God had prepared us for Elizabeth... the sense of preparation while I was pregnant. I never felt that He deserted me. He was more real in hospital than at many other times in my life. I had certaintly learnt things I could never have learnt without losing the very thing I'd set my heart on: a normal child."

"It was good to explain to my friend that she didn't need to feel sad for me. It's been hardest for me when people have not reacted at all. Maybe they don't understand and perhaps they are afraid of saying very much. But to have people react as if I'd said my daughter has a cold makes me feel like I must be imagining the pain I feel."

This part I underlined and put a star next to it. Talking about comparing your child to others -

"It could create a lot of guilt if you felt the child's progress depended entirely on your own efforts."

I remember feeling guilty. If Beth wasn't doing the same things as other kids, even kids with Ds that I probably wasn't working with her enough. Wasn't doing enough for her. I remember the guilt was intense. I knew I shouldn't compare her with others, but it's hard not to.

Oh my gosh! When I read this this week, it brought back so many memories!

"It had been so difficult at first when friends arrived with their babies. I had felt as if I had nothing in common with them. It had surprised me when they had mentioned diapers or feeding and I had realized I was doing similar things. But I still felt unlike all other mothers, as if I'd never 'made it'. This feeling took a long time to disappear."

Oh my gosh yes! I remember feeling like this! Sitting in a room filled with moms and their 'typical' kids, I felt so isolated and alone. No one knew what to say. It was like I wasn't a 'real' mom. So gut wrenching.

Then she talks about going on vacation and seeing a bus full of passengers:

I began to realize that the passengers were all handicapped. I couldn't take my eyes off them. I knew I shouldn't stare yet I felt compared to keep looking. Was it to see if any of them looked like Elizabeth or what Elizabeth would look like in twenty years? There were several with Down Syndrome. It seemed as if I was looking at people quite familiar to me, no longer strangers. Elizabeth had brought us a special link with these unknown people. Although they would never know it, I had my own reason for especially loving them."

Isn't that the truth?? I'll see someone at the mall who has Ds and I feel like we're best friends! I want to just go up to them and give them a big hug and yell Hi! Like we're long lost friends! I know I'd probably spend the night in jail so I refrain, but you know what I mean!

Re-reading this book has been interesting this week. Brought me back to the days of so much fear. Mainly fear of the unknown. But now that we're here, now that we're living 'in the future' I was so afraid of, I can tell you.... it's not that bad. As I'm typing this, Beth has come upstairs for a snack. She's in the pantry, going through the cupboards seeing what we have to eat. She's about the level of a 12 year old. She loves The Jonas Brothers and is getting out of the Disney Princess craze. She uses the microwave a lot but only uses the stove with supervision. It's a pretty normal, basic life. Devoid of all that fear I had all those years ago.