Thursday, December 11, 2008

My baby has Down Syndrome

My baby girl born July 22,2008, has Trisomy 21, a.k.a. Down Syndrome. I love her very much she is so sweet.I didn't know she had Down Syndrome until she was born because I refused the amnio, it wouldn't have changed anything had I known anyway.
Some days I'm perfectly fine with her having Down Syndrome and some days when I'm alone I just sit and cry.I have to be careful about crying because I don't want her siblings to think I'm sad about having Ruby.I'm glad I have Ruby but I wish I could change things for her.I didn't realize how many people hate others with special needs,they think they are a burden on society.I wish Ruby could be like her brothers and sisters,I know we will learn a lot from her but I don't want her to have to be different,I don't want careless people to make fun of her, or to think I should have killed her before she was born!

7 comments:

Kari said...

Hello. I am happy I stumbled across your blog. All the feelings your expressing I have felt at some time. You will adjust to your new normal. I had a hard time the first year. I cried alot too. Tristan will be 5 in January and he is the most awesome little boy! I reflect on how much I have grown and learned these past 5 years and almost pity the girl I used to be. Trust me Ruby will knock everyone's socks off. Congratulations!!! I hope Ruby has the best First Christmas. If I could give you any advice the number one thing I can suggest is Stress less. Before you know it your baby will be off to preschool and I personally regret worrying so much and not cherishing the baby years more. :)

Michelle said...

it's perfectly ok to have all those different feelings...especially when this wasn't something you were expecting. No one wants to go to the hospital to have a baby and then receive a life-changing diagnosis for your baby. It takes some time to get used to and come to terms with.

BTW - my daughter, Kayla, was born on July 15 - 5 yrs ago though :)

Lisa said...

I am really looking forward to sharing this journey with you. As I said in my blog, your Ruby and my Finn are very close in age, so you and I are probably at very similar stages in processing this whole thing. If you go back and read Finn's birth story at the very beginning of my blog, as well as the early posts I made, you can see that you're not alone in your feelings. You also might want to check out my friend Laurie's blog - Days With Dylan (the link is in my blogroll); her son was born June 28 and she also didn't find out that he has Ds until after he was born. I'll tell you, when I started blogging about Finn, I had absolutely no idea that there was a whole blogging community out there comprised of parents with children with Ds. It has become such an important source of support for me, I honestly don't know what I'd do without these people. I hope you find the same thing.

Qadoshyah said...

I just came across your blog.

My mom has 11 children also and I am the oldest of them. Babies 10 & 11 were boy/girl twins for my family. The boy was born with DS. My brother with DS is now 3 1/2 years old.

He is such a huge blessing to us. With all the kids in the family, it is a huge motivator and encouragement for my brother to do things. I'm sure it'll be the same way with your little Ruby! My brother is involved with everything my family does. Is he slower at times? Yes, of course. But, I couldn't imagine my life without him.

Because of my brother, my mother and I wrote a book about DS. We put it together because it has everything we would have liked to have learned about when my brother was younger. There are many articles written by various doctors & therapists. And there are many stories from parents and some from siblings. You can see more info about it at www.gotdownsyndrome.net/Book/whatyoucandobook.html. If you click on the link to buy the book there is a 15 page preview.

Feel free to email me if I can be of any help or support :)!

Qadoshyah
qf@gotdownsyndrome.net
20 yr. old sister to 10 siblings including boy(DS)/girl twins - Feb. '05

Shelley said...

I just found your blog. I have 2 sons who have Down syndrome. They are both adopted, so I don't know what it's like to find out a diagnosis at birth. But, I did want to tell you that while it may not seem like it now, there will come a time when you don't even really think about Down syndrome that much. My boys are just my boys...they march to the beat of their own drumb. But you know what, so do my other 3 kids. The best advice I can give you is....just live. If you focus on Down syndrome, it can become quite overwhelming. If you focus on your daughter, well...it's as easy as raising your other kids.

Your daughter is beautiful!

JaybirdNWA said...

I didn't realize that John and Ruby were just a week a part in age. I have enjoyed reading about your journey and look forward to reading more.

Lianna said...

Hi there,
My name is Lianna and I wanted to touch base with you. I noticed that you are following my blog so I thought I would read your story about Ruby.

I love the name Ruby. When I think of the name "Ruby", I remember my grandmother. She had a June birthday, and her birthstone is ruby. So, it is a name dear to my heart.

Congratulations on Ruby's arrival. Now, at six months later, you may find yourself feeling more confident -- more sure of what it means for Ruby to have Down syndrome. And even still, you may face feelings that repeat themselves in new situations. I believe that is perfectly normal, and helps us as parents to search out the best we can for our children.

I am looking forward as you write about your journey with Ruby. This is such an exciting time in your life -- albeit busy, I am sure!

Best of Happy Wishes for 2009!