Life with a Child with Special Needs is More Ups than Downs

Houston, TX, August 26, 2014 --(PR.com)-- Author Amy Troyer says her son, Ryan, came into this world to make a difference. Born with Down Syndrome, he has given many gifts to his family, Troyer said. “There are many moments of Ups and Downs on this journey but there are so many more Ups.”

Troyer knew there were many inspirational stories from families who have children or siblings with Down Syndrome and she recently compiled them in a new book, "It’s More Ups than Downs," published by Halo Publishing International (http://www.halopublishing.com).

“After Ryan’s birth in 2001 a passion grew in me to reach out, love and share with new parents the wonderful blessings that come from having a child with Down Syndrome.” It’s More Ups than Downs includes stories from families with loved ones ranging in age from 9 months to 64 years old.

A Painful Week in the Down Syndrome Community

from Whoopsie Piggle:
Real Community, Virtually
When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:

• I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.

• I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…

• It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.

• I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.

• I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.

• I certainly did not expect my heart to be broken.

In the past week, three babies have died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.