A Smattering of Posts Worth Reading: Infertility, Weddings, and a Little Boy with Down Syndrome Who Died Last Week

Last updated on: October 7, 2011 at 1:19 pm by Amy Julia Becker

A Smattering of Posts Worth Reading: Infertility, Weddings, and a Little Boy with Down Syndrome Who Died Last Week 2011-10-07T09:22:59-04:00 Amy Julia Becker

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A post by Joanna Goddard that describes the struggle of infertility: What if You Can’t Have a Baby? Especially if you are struggling with infertility or trying to understand a friend in this position, Goddard’s post might be a helpful guide. I resonated with these words as I think back to how I felt after Penny was first born:

I was a different person back then. Now I don’t even know what I’d go back and tell myself because I don’t recognize that woman. I think I would just hug her and let her cry because sometimes that is all people need. That’s what I needed. I didn’t want to hear anyone say, “Don’t worry, it will happen,” or “You have to be positive,” or “God has a plan,” or “My sister’s friend’s husband’s co-worker’s sister was infertile, and they have three kids.”

Kim Stagliano writes with grace and honesty about the pain of her three daughters not being invited to attend their aunt’s wedding: Excluded: Why Don’t you Want my Special Needs Kid At Your Wedding? She also offers helpful advice on how to include kids with special needs:

I ask you to please include your friends and family whose kids have special needs in your plans. Our life is hard, and we weep for our kids when they are left out. Just ask us if we can suggest accommodations. Most of us will stay at the birthday party, or bring along a helper to keep our kids occupied or even leave an event early if that’s best. We’ll do anything to help our kids fit in to social events.

Mark Leach’s op-ed reflecting on the life and death of Brady Zgonina, a 3-year old with Down syndrome who died last week, is worth reading in full as he discusses the significance of Brady’s life:

To some, no doubt, this will seem shocking: that a little boy with intense medical complications could be seen as anything other than a burden. A burden on his family, on his community and on the taxpayers who helped pay for his care through Medicaid. Indeed there are policymakers, academics, bioethicists, medical professionals, and just callous people who have argued that intensive care for a child with Down syndrome is a waste and simply should not be provided.

There are others who will read this and tell their friends of a sweet little “Down’s boy” who passed away. They will think it comforting to say, “It was for the best” because he is no longer suffering and, for the religious, he is now made whole. Both of these groups have got it wrong.

Brady’s life had a purpose, just like each of our lives do. In his short time, he provided perspective to those who thought they deserved sympathy because of a broken finger or a stressful day at the office. His tenacity was an inspiration to those who see challenges and fold instead of taking them head on. And, the love of his family was an example of pure, unconditional love that they showed Brady and Brady showed them. It was the kind of love we all wish we could experience sometime in this life.

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