July 17, 2006 10:22 AM
What you should know about Trisomy 18
One of the greatest benefits of blogging is meeting new people I would never have had the privilege of meeting otherwise. It's like having a steady stream of gifts coming your way, isn't it?
Actually, the lady I want to introduce you to heard me on the radio while I was at ICRS, then looked up my blog. Since my radio interview was about the culture wars and my evolution from radical leftist to whatever I am today, I don't know if I mentioned having kids with Down syndrome. Probably not. But she found out from my blog that I have 4 boys with Trisomy 21, and she wanted to tell me about her experience with her last baby, who was born with Trisomy 18.
Trisomy means there are three chromosomes where there are supposed to be two. The numbers - 18 or 21 or whatever others - indicate which gene pair has the extra chromosome. Trisomy 21, or Down syndrome, is the most common and I think the most viable extra chromosome situation.
An acquaintance of mine received the news a couple years ago that her baby would have Trisomy 18. I studied up on it to support her - something I highly recommend for anyone who knows someone who is expecting a special needs baby. The internet makes it easy- and the more you know, the more comfortable you will be in offering support.
Babies with Trisomy 18 have an extremely low chance of survival. If born alive, most die within a few hours or days. Even with extraordinary measures, their lives are very limited. In my research, I came across several websites that told the story of how the family prepared for the birth of their baby, deciding in advance that rather than going through a great deal of medical intervention, they would rather spend every minute with their child in a loving and peaceful environment. I had great admiration for the choice they made. Knowing the likely outcome of Trisomy 18, it is the path I would choose myself.
Lyssa May is the mom who wrote me yesterday to share her story and when I went to the website she created for her daughter Olivia Grace May, I was very touched by the perfect way the family handled their preparation for Olivia - including how they told their children and a written birth plan for the medical staff - as well as how they made the most of her brief time on earth. What a testimony to God's grace and faithfulness!
I am going to pass their story on to the TV people who are coming here Saturday. I hope they will share it. But in the meantime, I wanted to share it with you.
The thing is, when we are in our childbearing years, we walk around with so much fear - fear that society builds into us about the possibility of having a child who is somehow "less than." You all already know from my talk about Jonny, Jesse, Daniel, and Justin (for those new here, my 8th child was born with Down syndrome and since the birth of our ninth we've adopted three other boys with Down syndrome) that I don't believe they are "less than" in God's eyes, but only as judged by our culture, which measures us all by appearance and intelligence and wealth - hardly the measure of a true human being.
One of my greatest desires in encouraging moms is to have them let go of that fear so that if God's plan for an individual family includes a child with special needs they will have less negative stuff to overcome before getting to the place where they can receive and rejoice in the baby in a positive and healthy way.
As a mom who's raised kids into adulthood, I can tell you that even the best and brightest will at various points disappoint and cause you grief. Through raising sons with special needs I have learned to see that in God's eyes we all have disabilities. Our harsh judgment and nonacceptance of people with obvious disabilities probably brings more disappointment to God than any physical and mental limitations of those others he loves as dearly as us.
Anyway, if you have the time, do pay a visit to Olivia Grace's site today. It will bless you - but it will also give you more strength and courage for your journey as a mother. 2Timothy 1:7 reminds us that God has not given us a spirit of fear. That applies to the precious children that come into our lives as well.
Posted in Disabilities | Permalink
Comments
Thank you for sharing that website... you were right, it definitely will help to make me stronger as a mother. I also posted the link for it on my blog to share with others.
Posted by: Jessica | July 17, 2006 4:36 PM
I love looking at family photos, I think you can really get a "feel" for what the family is like. I think your family is beautiful. I myself am raising 6. I really enjoyed your post as well.
Posted by: Kelly | July 17, 2006 8:10 PM
Yes, That is a sad but beautiful story. What grace and love they displayed. Thank you for sharing, both Barbara and Lyssa.
Posted by: Holly | July 17, 2006 10:22 PM
Hi. I just read your most recent postings, after meandering through many blogs to find yours...I came from a family of nine siblings, and when we had our child with Down Syndrome (our first), my family wrapped their faith around me. We now have another child, a beautiful girl, and would love to have another (but I keep thinking time is running out for me, I'm 39), but it's the fear that stops me. Fear of having another child with a disability. It's hard for me to remember God has a plan, because somewhere along the way I lost my ability to have faith in God's plan. Slowly, slowly, it's coming back...
Thanks for you blog...
Suzanne
Posted by: Suzanne | July 18, 2006 12:32 AM
What an inspiration! It is so sad to me that families with children with disabilities experience discrimination, and that people consider children with disabilities to be "less than".
I was blessed to be raised in a community where people with disabilities are loved and cared for, and included in daily life. Unfortunately, for other reasons we were unable to stay in that community, but the attitude towards the disabled stuck with me. I have seen how people with Down's Syndrome (and other disabilities) can live happy, functional lives and be a joy to those around them, and if at some point God decides to give us such a child, I would consider it and tremendous blessing, and be honored that He would trust me with such a treasure.
(Also, I wanted to quickly add that Barbara, you are a real help to me with my own weight problems. I'm out of denial, at least. Thank you for being so blunt and straightforward about this issue. I have lost 1 dress size since reading your weight updates, and have started exercising more and eating more healthily. My husband thanks you, too. :D)
Posted by: Margaret | July 18, 2006 1:37 PM
I went to the Olivia Grace May site, but could not find where to go from the first page. No links worked. Wondered if I am missing something since no one else mentioned it. But I would love to see the site. I have wondered before how I would respond and handle a situation with Trisomy 18. I was very moved by your description of how well this family honored and loved their child in the time they had.
Shannon
Posted by: Shannon | July 25, 2006 3:03 PM
