Sunday, October 10, 2010

The Beginning, Part 4

continued from HERE If you are new, DO NOT start with this post. Go back to the beginning of the Beginning, please. Click HERE.

Continuing the pregnancy with a prenatal diagnosis of Down syndrome was our choice and one we never wavered from. However, it would be a mistake to think that we had it all figured out. The truth is Mark and I went through the darkest days of our lives as we grappled with our new reality.

It was early Spring and finally warm enough to sit on a bench outside on State Street. I had met a friend for lunch who was telling me about shopping with her daughter for her first prom dress. As another wave of despair crashed over me I doubted that I would ever do the same with Sophia. Then in a fit of supreme arrogance I proclaimed that I did not want to be a champion for people with disabilities. I knew myself well enough to understand that accepting my daughter's disability would mean I would become an advocate for her and the whole community. It was a job I had not signed up for and did not want any part of. (disgusting, I know).

I want to take my selfish, ignorant self from 3 years ago, hold her tightly and whisper, "There is so much you don't know, so much you are wrong about. These labor pains of grief are giving birth to new souls; your own soul expanded and stretched, your daughter's brand new perfect soul, and countless kindred spirits whose souls will evolve through our story. You will be humbled and honored to be accepted into your new community. There will be more times of sadness but they will be tiny in comparison to the joy. It's going to be amazing. Just hold on!"

Elisabeth K├╝bler-Ross identified 5 stages of grief. For anyone who has experienced loss you know that they are not really stages that you move through and check off on some kind of twisted check list with a certificate of completion at the end. "Congratulations. You are now healed." Denial, Anger, Bargaining, Depression, Acceptance. We move from one to the other, staying longer with some than others. Receiving an unexpected diagnosis such as Ds or other difference, whether prenatally or after the birth of a child, will send parents off on their individual path of grief. Grieving the loss of the child you thought you were having is real. Since the destination is Acceptance, I prefer to call this the acceptance journey.

As difficult as it was for us to adjust to the news, it was also quite hard for others to know how to respond or what to say. I didn't give anyone a chance to get it right at first. In the beginning I had planted my feet firmly in Anger. I heard from many that God only gives children like Sophia to special parents. Just one month before getting our news I said those very same words to my dear friend Neda when I learned that her daughter Arianna had been diagnosed with cerebral palsy. Each time someone said it to me I wanted to drop kick them and myself. So I guess you're not very special then. Really God? Thanks, but no thanks. Turn your attention elsewhere, mmmk? Again, I'm sorry Neda.

Sign me up for prayer chains? Pray that the amnio test was wrong? Remind me that I still had a week to terminate in the state of WI? Demand that I not ever consider such an option? Tell me that everything would be ok? Tell me about your cousin/brother/neighbor's similar experience? Gently suggest I should calm down as it wasn't as bad as I was making it out to be? All were the wrong things to say! Of course not all were wrong. It was my circumstance that was wrong and it was my Anger lashing out to anyone who dared come near me.

click HERE for an excellent list compiled by my friend Gillian of 10 things to avoid saying to new parents of a child with Ds & while you're there subscribe to her posts so she can build her readership & be compensated, please!

So what CAN friends and family members do? STAY! Don't be scared off by the diagnosis or by our awful behavior. Stay because I promise that you too will come through this a better person. *However if you recognize that you cannot agree with our decisions it is better to step aside rather than push your agenda. Listen as we express our fears, sadness, rage. Cry with us. Ask us what we need rather than give the blanket offer of "if there is anything I can do...?" We might appreciate a meal or gift card to our favorite restaurant (check first). Sit next to us and watch our favorite movie while consuming a bucket of buttered popcorn. Offer to watch our kids so that we can go out with our partner or take a nap. Do your own research on Ds (or other diagnosis) so that you can be informed. When my best friend Darcy subscribed to a national Ds organization it showed me how much she cared and was in it for the long haul. If you find a great website/book/blog, offer it to us but do not expect us to read it right away. We might stash it away (or chuck it out the window) until we are ready. Congratulate us on our baby and make a fuss over them just as you would if there wasn't a diagnosis. Keep telling us about your everyday life. We need to be reminded that life is still happening around us and your silly little issues are a much needed distraction. Humor. Help us laugh again. Be patient. You can't fix this and we may take longer to heal or do things that you don't agree with. Forgive our behavior even when we cannot forgive ourselves and just stay.

continued HERE

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Anonymous said...


the prairie

Dana said...

I love that you brought up Kubler-Ross's stages of grief!

I recently wrote a (very small) essay called "Amsterdam International"---spinning off of Welcome to Holland, but addressing the more real, emotional, raw side of coming to terms with the new realization that their child isn't "normal". If you want to check it out, here's the link:


JRS said...

Hi Dana,
I'm so glad you found my story. I had just read your essay on another friend's blog and left the comment that I was glad to read that you had been honest about your airport time that rang so true for me. When I read about others just sailing through this dark time (or only being here briefly) I am happy for them but it just wasn't the case for me. Writing it out has been healing work for me and unfinished business I didn't even know that I had. I'd bet you feel the same about your essay. Thanks again for writing it and for leaving your the comment. I really appreciate it.

gillian said...

Thank you so much for sharing the whole story with us. It's how we all gain strength. (and thanks too for pointing people to my examiner gig :).