Down Syndrome

I read this explanation of Down Syndrome on a website and wanted to share it with you. This makes it very easy to understand for those of you who don’t know a lot about it.

What is Down Syndrome?
Down syndrome is not a disease, but it is a genetic condition that affects the 21st chromosome. Instead of having two 21st chromosomes, people with Down syndrome have three. Even though people with Down syndrome have a lot of things in common, they are just as unique and individual as anybody else. Down syndrome occurs in one in every 733 live births. More than 350,000 Americans today have Down syndrome. The opportunities for people who have Down syndrome are increasing every day! More and more people with Down syndrome are graduating high school, going to college, working full-time jobs, and living independent lives. The cause of Down syndrome is unknown. While the chances of having a child with Down syndrome increases after the maternal age of 35, 80% of all children with Down syndrome are born to mothers under the age of 35. (I was 35 when I had my daughter with Down syndrome.) The vast majority of cases of Down syndrome are random occurrences that are not inherited. There is a rare type of Down syndrome called Translocation Down syndrome that is sometimes inherited by one of the parents, however it is still only a small percentage of Translocation cases that are actually inherited.

June 17, 2008
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The Little Miracle

Hi. My name is Victoria Jayne and my mommy and daddy tell me that I’m a miracle. They don’t think I understand them when they talk to me, but I do. I see them when they smile at me and tell me that they love me. They tell me that they are amazed that I am doing so well. I hear them thank someone named “God” for taking care of me when I was sick. I think I know who He is. He made me all better. I’m thankful for what He did for me, too.

All my band-aids fell off of my boo-boo and I thought you might like to see my scar. The doctor told my parents that as I grow that my scar will not grow with me. In fact, it may only be a few inches tall when I get to be a big girl. Then you will hardly notice it at all. Isn’t that great?

I want to thank all of you for praying for me. My mommy and daddy were so worried about me when my heart wasn’t working right. I remember them crying for me. I heard them say that they asked all of you to pray for me and I am so thankful you did. God heard your prayers and did something amazing in my little body.

Thank you for loving me and my family!

June 16, 2008
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Happy Father’s Day!

Today is a special day. Father’s Day. This day we recognize our husbands and father’s for what wonderful men they are. We take a few moments to reflect on everything they have poured into our lives and to thank them for the sacrifices they have made over the years for us. I have three special men in my life to which I dedicate this post.

Mark:
You are such a wonderful father. You stepped into this role naturally. I still remember the nervousness we had when Elyssa first arrived. It seems just like yesterday. Well, I guess it almost was! She is only going to be three next month! You have had a lot of experiences as a dad since three years ago. You went through three pregnancies with me hardly to ever miss one of my OBGYN appointments. You went through three labor and birth experiences with me, being such a great coach while I was in so much pain. Even then you were showing what love you had for me and for your children to come. We’ve also gone through so many doctor visits, tubes in ears, specialist visits, heart surgery … you name it! You’ve been there through it all with crazy o’l me! Thank you for just “being there” and not making me face any of what has come our way alone. You always made yourself just as vulnerable as I did. You were “open” and that means a lot.

To see you hold and love on your three girls is always such a thrill for me. You have always tried your best to provide for them and protect them. They know you love them. You make that evident. In everything you do, you are always thinking of your family. You try to think ahead of how things will affect us and our future.

You are a godly man with such a tender heart for people. Your girls could not ask for a better dad and role model. You are a gift to them.

You are a gift to me. I know we are not without disagreements at times, but to know that you will always be there for me is a great comfort. Your commitment to me and your children is such a blessing. A lot of men these days walk out on that kind of commitment because it is sometimes hard. You have stepped up to the plate and given our marriage and your children your all. We thank you for sharing your life with us.

We love you!

Daddy:
Thank you for being such a wonderful father to me. You taught me that character is much more important than anything else. You have always been a man of character and people see someone they want to be in you.

You were always a godly leader and made sure we were in church and were learning about the Lord. Because of you, I’m now married to a pastor and love working in the church. What a legacy to leave behind! My children will know the Lord because of you and even their children’s children.

I want you to know how proud I am of you in everything you have accomplished in your life. Sometimes you may think you wish you would’ve done more, but in my eyes you’ve done everything. You have been a wonderful husband and father. What more do you need to do? Things of this world will pass away, but what you have invested into your family will continue to live on as we pour into our families what we have learned from you. You are the best and I could not be more thankful to have you as a father.

Thank you for loving my three girls. They always have so much fun with you. It means a great deal to us that you stayed with Elyssa and Natalie when we were at UAB for those weeks. It was a huge comfort to know that our girls were being cared for by such wonderful grandparents. I know they enjoyed that time with you even though they missed us, too.

Thank you for everything you do and for just being “you.” I love you, Daddy. Happy Father’s Day!

DAD: (my second dad!)
Thank you so much for accepting me into your family. You have been so wonderful to me. It means so much to me that you have always shown so much love to me.

I will never forget all three of my girl’s births. You have always given me such a big hug after everything is over. We always seem to cry then. That has been a special time for me and a great memory. I especially will never forget the birth of Victoria when we brought all of our family in the room to see her for the first time. You all were surrounding my bed and I told everyone that she did have Down Syndrome and heart defects. We all cried together, but you said that we would love her no matter what. There was never a question that her Granddaddy would love her! For that matter, we knew we would all love and accept her.

Thank you for all of the ways you have shown love to us. You and mom bless us in so many ways and we could not be more thankful. You are so giving and loving. You never have to doubt that we feel your love. We pray that you feel as much love from us.

Thanks for being a great Granddaddy to my three girls. They love you and think you are great!

We love you so much and hope you feel so very special this Father’s Day!
June 15, 2008
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Looking Better All The Time!

Here are a few great, recent photos of Victoria. She is looking better and better each day. Her left eye is much improved and I’m really praying that whatever has been going on with that eye has resolved itself permanently.

We are a little nervous because it seems Victoria is finding her fingers on her left hand. She hasn’t actually started sucking on them, but she gums them from time to time. She has never seemed real interested in a pacifier, so she may go for her fingers. We kinda hope not, but we’ll see!
Victoria’s progress continues to amaze us. God has truly done marvelous things in her life and we feel so thankful to be a part of His plan.
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