DS Parents – Guilty of Feeling

I started to say I learned something the past two days.  However, I realized I was simply reminded of something. A lot of parents, especially moms of children with Down syndrome and other disabilities, have a lot of guilt and are not always given an opportunity to be able to freely discuss their feelings.  I have been hurt and I have also become more than a bit irritable on many occasions when folks declare, “I didn’t have prenatal testing because I wouldn’t have terminated.”  Not always but sometimes the tone is self-righteous and accusatory. It sounds like this, “Oh you had a prenatal test so you must have been thinking you would abort. That is appalling! I would never…. ” If you know me, have heard me speak or have read my stories – you know that I did not have a prenatal diagnosis for the purpose of terminating. I’m sure most people don’t realize that’s how it comes across, but sometimes it does.  I respect that others chose not to have a prenatal diagnosis and I’m fine with that. I want to be supported in my decision, too. I think that’s what many parents are looking for: understanding and support and to be able to say “this is what I feel. Couldn’t love him or her more, but there are days when…” You can fill in the blank.

Daddy caught a moment of fun and glamor for Rachel and mom!
Daddy caught a moment of fun and glamor for Rachel and mom!

Often when I write articles and give speeches, I get this feedback: “Thank you. Thank you for saying what I feel but I have been made to feel so guilty for feeling this way that I don’t say it.”  That bothers me. Of all places we should be able to share freely with our comrades in the Down syndrome community.  When I wrote “A Glimpse of God’s Grace” for the Kansas City Star’s Faith Matters section, I had five emails to me saying just that.  Every time I blog about this, I have such messages. Yesterday alone, I received 15 messages that echoed this sentiment in some form or fashion.  Three of those messages from yesterday:

Thank you for posting this!!!! You took the words straight out of my heart and mind. I’ve come across other parents who about take your head off if you say you would consider this….so thank you for saying it if that’s how you feel. I love my daughter, but I, too, would take away her challenges if it made her life a little easier.”

Thank you! I was beginning to think I was the only one looking at this discovery as a good thing. Down syndrome does not define my daughter, she would be herself without it. Life would be a whole lot easier for her without it.”

“….Something like this has the potential to improve her health as well as cognitive function, and I don’t feel as though I am playing God in wanting my child’s life to be easier than it is now. Thanks for showing me I am not alone in this belief.”

Last week I joined some other DS bloggers at the NDSC Convention. We discussed why we blogged. I said I blogged to create awareness, to educate and advocate. I also find it kind of fun to share our crazy, “fun finds us life.”  Sometimes I blog for my own catharsis because writing has always been my escape and therapy.  Deep down in my heart of hearts I believe that God has given me the privilege of speaking up not only for individuals with Down syndrome but for their parents too.  I hope my willingness to share helps others to navigate this journey with a feeling of support and understanding. These comments tell me that I am doing just that.

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  1. Jawanda , Mark and I were talking about the new ‘Discovery” last night and we both said if there was a way to make Rachel’s life easier of course we would take it! We love her as she is but would also like to help her in any way possible to have a wonderful life.

  2. Jawanda, I think anyone who has a child that is differently abled or has a chronic disease would feel as you do. We continually pray for a cure for crohns disease so that someone else does not have to go through what our oldest child or my brother and sister have gone through. Would I have not had her had I known, of course not, she is a joy and a beacon for others with this disease. She lives her life to the fullest and always for God. Life is just different for her. God Bless you for your writing and how it affects others.

  3. Thanks for reading! I watched the agony my parents went though when my brother died suddenly in a tragic car accident. As horrific as the pain was, they would have done it again for the 22 years they had with him. So it is with all of us. We don’t want to see our loved ones hurt. Hurt and challenges cannot be avoided but we would love to pick and choose – or so we think. My at the time 17 year old niece said it well when she learned of my prenatal diagnosis. “She’ll have challenges but we all have challenges. Hers will just be different.”

  4. Jawanda, keep up the great blogging! I would not change a thing about my daughter’s personality, but if there becomes a way to stave of Alzheimer’s we would take it!

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