Tuesday, October 28, 2008

Points about Coming to Terms with a Diagnosis of Down Syndrome

I want to share with you something I wrote out for someone:
1. Acceptance of the Diagnosis Does Not Mean that You Have to be Pollyanna
I initially received the diagnosis of Ricki’s Down syndrome very well (maybe because I had a relative who for years had been telling me that if I kept on having kids eventually I'd have a Down….). However, I did wonder how long it would take until that thought “I had a baby with Down syndrome” would not be my first thought on arising in the morning. Eventually, after about three weeks, it happened. I was starting to accept it as part of our lives.
When Ricki was about two months old, I went to a friend's baby’s circumcision celebration.. (This in itself was perhaps a mistake. I was straining not to be jealous.) Someone commented about how "well" I was handling Ricki’s diagnosis. I turned to a friend who had lost a child to cancer, and said, "You know I prayed very hard for a girl this pregnancy. Sometimes I feel like SCREAMMING ‘G-d, this is not the type of girl I pleaded for.’" She told me that to be "accepting" is not saying, “Hey G-d, thanks so much for giving me this kid with DS. It is gulping and accepting it, and going on…."

2. Acceptance of the Diagnosis is Likely to Come Piecemeal, in Stages
Later, when Ricki was about 6 months old, and I was overwhelmed with therapies, Passover cleaning, etc., I was standing one day with her at the bus stop. I said "G-d, I just can't take this any more…" I paused. In a moment of self-reflection, I thought: "Ah, Rickismom, you want things to be easier? Who said it is to be easy???" And then and there I said to myself, “I am the mommy. I am deciding that therapy can wait three weeks till after Passover.” At this point in time, I was not only reaccepting the challenge, but empowering myself with the knowledge that I am the one who knows what is best for my family, including both myself and Ricki.


Maddy said...

I won't give you a truism, because you and I have heard them all before many, many times.

What I do know is, ......you can do this.

Best wishes

Maddy said...

p.s. I also know that there is a huge online community who are similarly situated, supportive, understand and only too happy to help you on your way.
Best wishes

rickismom said...

Maddy, I am WAY beyond this point!!!! I am posting this for new moms. Ricki is 14 years old and (almost)I accepted her diagnosis AGES ago!!!!!!!

Terri said...

I too accepted things pretty easily early on. Supportive friends and family were a huge help--the internet was out of my view then, mostly. My daughter is 14 too and I still occasionally have moments of 'overwhelm' usually brought on by a system that won't work with her or someone awful.... Usually we do well--with eyes wide open, sometimes not so much!

I think "what it is/what it's not" conversations really do help folks. You do good work!

Jewish Side of Babysitter said...

RickisMom: I have a question. In her younger years as a baby, did it show that she had down syndrome? did ds babies do things differently than other babies?

rickismom said...

Dear Babysitter,
First of all, there are physical attributes that are pretty obvious in most cases.
In addition, sometimers the children will do "weird" things. Ricki at one year of age was self-stiming" by looking at her hands a lot, and also used to sit and forcefully rock, banging her head on the couch. We managed to train her to stop these behaviors.
Lastly, and most apparent to the parents, is the slower pace-- the longer time it takes to learn stuff. So they are always "behind" their same-aged peers.

TUC said...

The things that strike me the most and make me comforted are the 1 & 2 lead sentences. I am all about stages and if you read my blog then you Pollyanna just isn't my style :-)

Thanks so much for sharing this. You are a very good virtual mentor.