Our introduction to Trisomy 21
We would like you to meet our 5th little darling, that many call Emmy. I think she has more nick names than all of my children put together!
Emmy was born nearly three years ago, on March 17. For Catholics this is an amazing day. For some Irish Catholics, this is more than amazing, this is the only day that matters. For us, it would be a day that we would never forget. After her birth, we would find out that Emmy had a cluster of features that would lead doctors to suspect that she had Trisomy 21.
On the day Emmy was born, we had more questions than we did answers. What did we know? We knew we would be okay. We knew that we loved her beyond words. We knew that this was indeed part of the plan for our lives. No doubt about it. What didn't we know? We did not know she had a heart defect. We did not know enough about Down syndrome, Trisomy 21, or the fact that people called it by two different names. We did not know if this would affect our other children, (thank God it did, it has been such an amazing gift to them). We did not know if she would be able to do the things that other children do. I would say we did not know more than we did know. We turned to people who had gone before us to learn what we did not know. We turned to God to help us to continue to have the strength to help Emmy develop to her best potential. We read a lot, we prayed a lot. There were many resources that came from perspectives that were different from who we are. We are a Catholic family. We read about families who were of all different faiths. They told their stories, with their traditions woven in and through them. They were beautiful. So while these stories were absolutely wonderful, they were missing something for us. They were missing our faith journey. We could not fully "see" our family in the many books, web sites, and other resources. They could not answer the questions we had whirling through our heads. Would our daughter make her First Holy Communion? What about her faith would she understand? Along with the questions we had, many authors would share with us how their faith helped them to understand the diagnosis that their children were given. We looked for our faith in their stories. But struggled to find it.
We hope that we can give that gift to other families who are new to Trisomy 21. Our beautiful faith reminds us of the dignity of all life. We pray that our stories will share our journeys, with the Catholic faith woven through them. We hope that what ever your faith is, you will find hope here, and see the joy that our children have brought us. We would like you to meet the families who have chosen to participate in welcoming you to the world of Trisomy 21. From Emmy, her siblings, and her parents, welcome...to Holland.
7 comments:
Hello,
I just happened on your blog and wanted to say that we also have a young lady who was born on March 17th, but in 2004. She is almost four. She is number 12 in our family. Will be looking at your blog some more later tonight.
Debra and Hope
Our daughter Veronica (means true image-of Christ we hope)was not born on March 17, but she is 15 years old now and remains a joy - the youngest of eight. She reads, does math (does not like story problems) and she was Confirmed today. She chose "Regina" as her confirmation name because she wants to be a queen. She has earned gold, silver and Bronze medals in swimming at the State Special Olympics. She loves to act, sing and dance.She participates in a girls club with "regular" girls and a teen club for special needs youth. She is like her older siblings in so many ways - but more unconditionally loving.
You have a lot of wonderful times to look forward to - even with the worries we have sometimes about her future, we would not change a thing.
peggy and all
Hello.. Glad to see your blog here. As a Catholic family we too had the same questions. Our Samantha Marie was born in -05 The yougest of 6 children so far.
Steph
Hello! My son Joey was born March 14, 2006 (I was hoping for a St. Patrick's Day baby) and was also blessed with a little something extra. We are also Catholic (Irish Catholic at that). I'm happy to see this blog started up, thank you!
We also have been blessed with a daughter who has that little something extra on chromosome 21. She is the 5th of our 11 children and we wouldn't change her for all the world. As Catholics (of Irish decent) we firmly believe that each child is a precious gift from God. Your blog is a beautiful affirmation that these children truly are created in the love and image of an awesome God.
Aye, indeed all life is precious, sacred and worthy of our Lord's blessings. Thank you for raising awareness of these dear, sweet children.
http://plaincatholic.blogspot.com/
I see these posts are from two monhts ago, but: St. Patrick's Day is good, but our girl was born on Christmas Day! (29 years ago.) We learned that she has mosaicism when she was 25. I'm glad the president of the Mosaic Down Syndrome Association told me about this blog. Since the ACOG guidelines are "mandating" prenatal testing for Trisomy 21, and with a 90% abortion rate for prenatally diagnosed babies, I think it won't be too many years before most surviving babies with Ds will be Catholic. At Easter mass yesterday, I observed 3 such families, including my son and his wife, who's 11th baby (our granddaughter) was born last October. Looking forward to posts on this blog.
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