Down syndrome, and rambling thoughts

I woke up extra early this morning, I do cherish some alone time and I went to my support group and read about a young man with Down syndrome who was depressed. No one knew why, until he finally opened up and explained how he was feeling. You can read about him here: BLOG What spoke to me about this young man was a concern I had about my now two soon to be three daughters with Down syndrome. For Meghan it will be easy to tell her, not for a millisecond did we consider you not being a part of our family.

For Kara and Amanda; Kara's mommy and daddy left her at the maternity house after they learned she had Down syndrome, and Amanda is the 4th child in her family, she was given up because of her diagnosis. How do I tell them they were cherished children when their own families did not want them? They will be loved and cherished by us, but I know they have to carry pain from being left and not knowing the loving embrace of their mothers after their births. When Meghan was a tiny infant she did not like to be left alone and would yell until someone returned, not crying, vocalizing, like "Hey, hello? Hey out there". It was uncanny that she could communicate her needs so well. These two angels would likely have cried out and been ignored as the caregivers tended the 30 other babies in their care.

We heard many hysterically crying infants while at the baby house in November-December last year. In fact I had to leave because it made me ill to hear the need and not be able to answer it. Several times the caregivers were sitting and watching TV and eating sunflower seeds while the infant(s) was screaming. I was angry with them and upset for the baby(ies). I left the orphanage in tears many times because of their indifference and laziness; something DH said because he had worked in orphanages here (we don't call them that) and said it is unheard of to sit and relax when the children needed you. I inferred that they did this to all of the babies in their care and the babies learned they could not count on anyone to give them attention, and forget about loving them. HOWEVER, Kara did have two older women who obviously loved her and took very good care of her, I could see it in their eyes. When they worked neither came out of the room and lazed about. When I opened the door they were often rocking babies and singing to them. You could tell they cared about the children, but the young workers seemed to like to watch TV more.

Well, we have been home with Kara for 3 months, I can't say that people have rushed to our home to see our new daughter, s few very good friends, yes, thank the Lord for them. We are so excited and happy to have Kara home but yet many of our old friends clearly do not share that excitement. To be honest, most of them can't wait for their children to leave home, and look forward to that empty nest, I guess I am the opposite.

I think a lot of us are shocked at the reactions of friends and family when a child with Down syndrome enters our lives. When we decide to adopt a child with special needs, many people react badly, and try to talk us out of it. Some just don't say anything but stop returning calls and emails. I suppose that is when you decide to leave those friendships in the past and move beyond them.

I have done a lot of reading about Down syndrome since Meghan was born 7 years ago, I made it my goal to know all I could about her diagnosis. I joined support groups both in person and on-line to help with the day to day things parents of typically developing kids do not understand. My friends here tried to be supportive, but they did not know what we were going through. Meghan's doctors did not send me to any of these groups, they did nothing to help us, support us, and one told us to give her up for the sake of our other children, and that she would destroy our lives. He was our doctor ONE day.

We got some wonderful and supportive phone calls after all our friends heard about Meghan, we also got quite a few strange reactions that baffled us. I guess my favorite was from a woman who had a daughter with cognitive issues herself; she told me to tell everyone I had an affair with an Asian man, since Meghan looked Asian to her. At the time of her birth I was working with senior citizens teaching fitness classes for them. I loved them, and they had given me a huge baby shower, some however used the term "Mongoloid" to describe Meghan, and a few were off put by us keeping her in our family. In their day it simply was not done.

I was lucky to be able to see their attitudes change, Meghan was not allowed in the day care with the other children because she has a floppy airway, but her doctor allowed me to take her to my senior fitness classes. They all understood if they were ill, they should not come. From age 3 -8 months they watched her grow and change. They saw her popping her chest to the music, laughing when they did, smiling at their antics, interacting with them.

During that summer they saw her learn to get out of her car seat, scooting across the floor to their chairs so she could take their water bottles. After a time I could see that they loved her spirit and determination. They also started to say; "She is more like a normal baby than not", now it wasn't a statement I liked hearing (the NORMAL aspect of it), but it showed that Meghan helped change their minds about kids with Down syndrome. Many of them adored Meghan and asked for her when she was finally allowed into day care.

Meghan 2 weeks old

Meghan helped teach some older folks about the true nature of children with Down syndrome. Many people think we are "enlightened" in America and sometimes we we sit and point fingers at those women in 3rd world countries who walk away from their children when they see physical deformities or hear of genetic abnormalities. I can't say Americans are more enlightened, I think a 90% abortion rate tells me otherwise.

I think about the children we have, our homegrown and adopted children with Down syndrome. How do they feel when people stare at them, or the ignorant say cruel things, or a whole group of doctors decide that a child like them does not deserve life, and encourage pregnant moms to terminate them?

These are the beautiful children who have been in my life since Meghan's birth, these are faces I look into and see beauty and hope, and love.

I met some of their moms shortly after Meghan's birth, we all belonged to a huge on-line support group, but it seemed all those people did was talk about school issues, so we splintered off into our own little support group, 15 moms from across the globe with infants under 6 months of age. Many of their children are pictured here.

Others I met later on, most of them were much younger than I, and most did not know until their baby was born that they had Down syndrome. One of the mothers was 18.

If ACOG has their way, they will never be another family surprised by the birth of a child with Down syndrome, they want to test all expectant mothers. What would be the purpose of this testing if not to have a 100% abortion rate of what they believe to be "defective fetuses". Many who have given birth to or adopted children with Down syndrome have issues with these guidelines. We wonder what they are saying about those who are already born with the diagnosis of Down syndrome, it is understandable why they are depressed, and why the young man in the beginning of my blog is feeling so upset.