Saturday, March 19, 2011

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.


Adelaide Dupont said...

May I say how very glad that that Englishwoman did not ask for a "normal" baby. It does seem a bit wrong to bargain with God in that fashion (and I a humanist).

And spending the night in jail is nothing to spending a life in fear.

Unknown said...

This post was absolutely beautiful! I love how you have chosen to embrace down syndrome. You share so completely and honestly. It is refreshing : ).
Thank you!

Kristin said...

I have to admit, I do have spells of fear, mostly about school, mostly because I am not good at advocating.

"From the top of the slide" - yes - I made Piper catch Max at the bottom, and prayed he didn't fall off the side! (it isn't as steep as it looks in the picture)

Becca said...

Great post! I'll have to keep an eye out for that book - sounds very interesting.

Unknown said...


My name is mrs. Farida Malik and i along with my family hail from karachi pakistan
I have recently moved to NY-USA permanently and reside in astoria queens

i am now a home maker however i was an acting principal for deva academy for the deaf
and also receieved teachings from the lexigton school for deaf here in NY back in the 70's
i have been involved in social work most of my adult life.

I am writing for my son taimour ahmed noor.
he is now 24 years old and is down syndrome.

Back in pakistan, i had very limited resources to tap for my son
however i tried everything to normalize him and make him more sociablly acceptable

he was in a special school (IBS - institution for behavioral studies)
he was part of special olympics
he was attending creative camps (catering to such individuals)

however, since we had to move here, i am very worried
as we have no knowledge as to where and how should
he be able to utilize his time and make the most of it

he is an american citizen, enjoys indian music, draws and sings
i would really appreciate (humbly) that if some one can assist and guide us
to what oppurtunities are out there for him.

please i look forward to hearing from someone, my number is: 7187770895
you can call or email me anytime for this. i myself would like to assist as much as i can

thankyou so much
awaiting your reply

a worried mother
mrs. malik