It's been a rough few weeks in the Down syndrome world. We have lost three, young and beautiful children.
I wanted to write about one of the little girls, Annie. Sometimes the internet and Facebook drive me nuts and other times, I love what it has done for our family and for others.
Rumours start floating around and I usually jump the gun.
I had read that Annie was denied a heart transplant because she has Down syndrome. I don't know if this is truly accurate information. I have heard many stories in the past few months, where a child was denied a transplant because they have Down syndrome. I have read articles from Canada and from the US, but it seems to be more of an issue in the United States.
I have two children and both girls should receive that exact same medical care and attention. I will not tolerate the medical profession telling me that because Adele has Down syndrome, she is not eligible for any kind of transplant. Adele is a human being, a valued life and she deserves the utmost care and attention, should she need it. She has the right to life, she has the right to be taken care of and should anything ever happen to Adele, she deserves to be taken care of just the same as somebody without Down syndrome.
This truly infuriates me and to be honest, when I first read that a child was denied a transplant because of Down syndrome, I thought it was false. There is no way that because a person has a beautiful ability, they would be denied a transplant.
We, as a community, need to come together and fight this, we need to take a stand. When I say community, I mean the whole world. Every child, every human being, deserves the same medical care.
Playing in the rain!! :)
I understand that if a child with Down syndrome has an underlying medical condition and their body will reject a transplant, I understand why they wouldn't be a candidate. I get it. I know that a person without Down syndrome, who has other medical concerns, would also not be a candidate. I just need to make sure that doctors are not discriminating. I need to know that hospitals are not discriminating. I need to know that every human being will be treated as equals.
James and I are the girls strongest advocates and we will fight for both of them, we will make sure that they are loved equally, respected and that they are viewed by others as equals, I can't stress this enough.
I think that in the future, I am going to write a book.....it will be called;
THE ABSOLUTE MOST RIDICULOUS THINGS THAT PEOPLE SAY TO PARENTS WHO HAVE A CHILD WITH A BEAUTIFUL GENETIC GIFT.
Please feel free to submit your own ridiculous lines.....
- She sure looks like she has a mild case of Down syndrome.
- Her head is so round, she must be mild.
- Kids with Down syndrome are ALWAYS happy.
- I'm so sorry that this happened to your family.
- She looks so normal.
- My uncle's brother's nephew's cousin is autistic, so I know what it's like.
- Why didn't you stop having kids after the first one? WHAT???
- Did this happen because you and your husband are related?
- Wow! How old were you when you had her?
- You are a saint.
- Will you ever have any more children? That's kind of scary!
- Well, I guess it could be worse!
- God has given you a child forever.
- Does she actually look like a family member?
- You sure are handling this well.
- Do her brothers and sisters have a bond?
- Did you actually know when you were pregnant?
- What's wrong with her?
- Did you drink? Smoke? Do drugs during pregnancy?
- Will she always be like that?
- Is it somebody's fault?
- Did it come from your side of the family?
- They don't live very long, do they?
- I guess you won't have grandchildren.
- I'm sure she will get a job, maybe at Wal Mart or something.
- Do you take her out?
- Is her sister handicapped?
- You should feed her more.
- Does she sleep?
- What will happen to her after you die?
- Is the rest of your family ok with this?
- You must be exhausted.
- Ummm....she's so......cute.
- Did you consider adoption?
- Is there a chance that she will outgrow it?
- I guess you can't go on vacations.
- Can I touch her?
I get that in most instances, it comes from a place of misunderstanding. I love to be the one who explains and educates. I love when people ask questions, I love when I get to explain how our world is, some ups and some downs, but a whole lot of love. The only time that it really bothers me, is when somebody is intentionally hurtful. Some of the above are to make you giggle and have a little chuckle. Before Adele, I know that I would have said some of these, so please take this lightly. I am not bashing. I want others to ask questions, I just have no tolerance for disrespect and unkind comments.
When we try to be a big girl and not take a nap!
A Perfect Extra Chromosome - Awe-Inspiring Miracles