Wednesday, February 10, 2010

The Wonderful World Of Down Syndrome

I love to read the blogs of other moms out there who are navigating the world of Down syndrome like me. Some of the blogs are funny. I believe that God gives all mothers of children with special needs a certain sense of humor. Some of the blogs are sad as mothers struggle to understand the "why me" of down syndrome, heart defects, childhood cancer, or the death of a child. Some blogs are inspirational as they tell the tale of adoptions of children with Down syndrome from European orphanages-what amazing stories they tell. Some blogs are informative as the mothers help spread information about something that they have tried that worked for their child. Others are, like mine, a ramble of daily life intended to keep distant family and friends connected. I created this blog just for that....keeping family connected. I had hoped it would help us stay connected with the grandparents, but it turns out that it is just too complicated for them to figure out. Ironically, the people I am keeping updated are people I do not know personally, but am connected to through our experiences with the world of motherhood and Down syndrome. I have recently debated about whether I wanted to continue posting, since this was not my original goal.

That is until I came across a couple of blogs recently that really touched me. They are about new mothers accepting a Down syndrome diagnosis, prenatally and at birth. I read their words, felt their pain, and really thought about what it means to have a child with Down syndrome..... I remember the day we found out Rachel would have Down syndrome. Rachel was diagnosed prenatally, and we received the results on Mike's birthday. I remember feeling that my world was crashing down around me. I sobbed that our family would never be the same and that we would never be able to do anything as a family again. I feared that having Rachel in our lives would be a detriment to the older girls. I felt that no one in the world had ever gone through the emotions that I was going through, that my circumstances were unique.

I was over the shock of the diagnosis by the time the pregnancy was coming to an end, but I dreaded the day Rachel would be born and my "perfect" little family would become the "Down syndrome family." The day she was born, I remember holding her in my arms and thinking, "Now what?!" Every time I looked at her I saw Down syndrome and not her. I was reading lots of books about Down syndrome and what to expect, and the most memorable thing I read was that they are babies first. Babies first!! So obvious and yet still a revelation! Over the next few weeks, as I got to know Rachel, I began to realize that she was not this terrible package of problems, like many sources would have you believe, but she was a beautiful little girl. She was indeed just a baby. I was surprised at how, despite the Down syndrome, I felt she was perfect. The flat nose, the small low set ears, the Simian crease in the palm of her hands told my brain that she had Down syndrome, but my heart told me she was a perfect little girl.

The years have just zoomed by and Rachel has accomplished many things. She signed her first word at 10 months, sat unassisted at 10 months, finally perfected the crawling technique after months of crawling on her belly and elbows. She learned to scoot around the house on her bottom when she wanted to carry something to another room, but could not walk yet. She started preschool when she turned 3, learned to walk shortly afterwards, and learned to go to the potty at 4 years. I remember how excited I was when she figured out how to sit up on her own!! I don't remember that about the other two girls, but it was so exciting when Rachel did it. With each accomplishment I have cheered her on with such excitement and marvelled at how wrong I was in thinking our lives were doomed because of her. She is an amazing little girl and she has changed my perception of people with special needs. We are not the "Down syndrome family" I had feared we would be. Life goes on and it is good.

I am in total agreement with all the moms that I encounter in the blogging world that this is not the journey I expected when Rachel was first diagnosed. We, as a family, do smile again and we do get to do a lot of things that I first thought we wouldn't, but there are things that could be different for us if Rachel did not have Down syndrome. Rachel is six years old and needs to be bathed, taken to the potty, assisted with dressing, have her teeth brushed, watched with vigilance to keep her from wandering out of the house. She does not speak except in hard to understand, single word requests. Bless her heart, she tries, but I just cannot understand a lot of what she says. She is still very dependent on me for most things at a time when the other girls were starting to become more independent.

I do not want anyone feeling sorry for me, I just want to say that having a child with Down syndrome is hard at times. It is certainly not the death sentence that I thought it would be in the beginning, but having a 6 year old that functions like a 2-3 year old gets very tiring! Because of this, I have decided that I need to remain in the blogging world, because I need the other mom's out there! I need to laugh with them and cry with them and have them tell me that they go through some of the same things I am going through. That it is okay. As I read the posts from the new moms, I realize that even though I felt so alone with my thoughts and emotions at the time of Rachel's diagnosis, I was not. There were lots of other moms out there going through the same thing. If only I had been blogging then! As I read these blogs I am realizing that I am not alone today either. It is great to have these friends out there in the cyber world.

You know, my family is a Down syndrome family, and it is not so bad. Yes, Rachel is still very dependent on me for lots of things, but she is learning something new every day (well at least every few months ;-) ) There is nothing better in this world than a hug from her. Someone talked about how wonderful a child with Ds can hug and suggested it was because of their low tone, that they felt so great to hug. Whatever the reason, she is a great hugger! She has a smile that can light up a room. She is the one that shows me that my two older girls do indeed have compassion for someone other than themselves.

The people I am connected to through this blog all know how special these kids are-some are just beginning to realize it and others are well into their journey, but they know. Some of them also know that it can also be hard, sometimes, to have to continue to be there for a child that takes longer to become less dependent or to see a child younger than yours do so much more than yours. The moms in the blogging world know where I am coming from, and as one mom said, I can blend in here! These moms are some of the neatest and most interesting people I have met. I look forward to seeing what they are up to and what accomplishments their kids are making. I appreciate the knowledge they share and the experiences they pass on, and I love being a part of their blogging world. I love being a part of the Down syndrome world. It is indeed a wonderful place to be.


  1. Wow Tracy, what a neat post. You have me feeling quite emotional. :-) I too have pondered "to blog or not to blog?!" as like you I started up only to keep connected with friends and family. But I'm so glad you are still blogging as I love hearing what's been going on and reading about your family! Thank you for sharing your world with us.

  2. What a touching and honest post - it is great to hear your perspective as a mother with an older child with DS (my son is only a year). I too have found so much support among the mom blog community!

  3. oh Tracy, you HAVE TO KEEP POSTING. As the distant family member who is actually able to "figure it out", this is my connection to you guys... this is how I watch the girls grow. Where else would I find a Rachel-on-the-counter screensaver?


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  5. I don't know how I missed this post. Just read it and LOVED it! I agree with everything! Morgan has added so much to our family but it isn't easy. She has some challenges and is very defiant which can make mornings and getting ready so difficult but I wouldn't trade her for anything! She's made me such a better person and our family more colorful. I just wish some of our blogging buddies lived closer. :)

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