"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Monday, October 5, 2009

How wrong one can be?

Being this is Down syndrome awareness month, I've been thinking quite a bit about when we found out that Carly was in fact born with Down syndrome.

We found out the day Carly was born, that there was a possibility that she was born with Down syndrome. However, the doctors did not feel there were very many soft markers. A couple, but nothing that was real alarming. Still to this day, that remark from the doctors just floors me. A couple of markers? Really? Give me a break. Either she has them or she doesn't.

I remember the labor and delivery nurse asked me how old I was..this only hours after having Carly. I told her that I was 35. And that I had just turned 35 a few months prior. Of course I just knew that was it. My age did it. I was more than 35 at the time of Carly's birth. That must have done it. 35, the number that all people talk about. Over 35 and pregnant. Like it's a sin. I just knew it was all due to my age. What other reason could it be? How wrong can one be?

Within a few weeks, we had our confirmation of a Down syndrome diagnosis. We went through shock, anger, grief and all those other emotions that one goes through after a major, life altering shock takes place. All sorts of thoughts went through our minds at that point. Would she be able to sit up? Would she be able to walk? Would she learn to talk? We had no idea what to expect for our daughter.

I had seen both ends of Down syndrome. My cousin (my moms niece) was born with Down syndrome 25+ years ago. She isn't able to walk, talk or feed herself. I had also seen the other end of the spectrum regarding Down syndrome. My 2nd cousin has a son, who is now around 12, who was born with Down syndrome too. He walks, or should I say RUNS! He talks. He attends public schools. However, just because we knew that it didn't ease our doubts for our daughter. Our minds quickly leaned toward the worse possible out come for our baby. How wrong can one be?

I didn't know how I was going to take care of this baby. I only knew how to mother a typical child. One who didn't have any "special needs". I would soon find out, you parent these kids the same way you parent any other kids. We gave Carly utensils at dinner time, just as we did with our oldest two. Imagine my surprise when I found out that using spoons and forks are a huge milestone for kiddo's with Down syndrome. I never thought about it. I just went about being a mom as I did with our first two.

Carly did sit up. She did learn to walk. By 18 months she was cruising.Walking all over the place. She was feeding herself with utensils by the time she was 1 year. I doubted her. I doubted me and my ability to care for her. Teach her. Help her achieve all that she were able to.

Since having Carly, I have found out that although age may increase your chances of having a child with Down syndrome. Age is not all to blame. Teenage girls have been know to have given birth to babies with Down syndrome too. Age is a factor, but it's not the only contributing factor. As I said, I just knew my age was the reason for Carly being born with Down syndrome. How wrong can one be?

For those of you wondering about me having 2 cousins with Down syndrome. I did run that past my genetics doc. She informed me that there was no link between the 3 separate (Carly included)diagnosis of Down syndrome in our family. I don't actually buy that. You see, this is all on my mothers side of the family. My moms sister had the first child in our family with Down syndrome. My moms first cousins daughter had the second child in our family born with Down syndrome. I have the third child born into the family with Down syndrome. Coincidence? I'm not for sure. I think that there has to be a link somewhere.

For those who don't have a child with Down syndrome. You may think you can relate to us moms who do. You cant. There is no way for you to 'get it'. Not until you have walked in our shoes can you 'get it'. For those who underestimate our kids. Remember, I was underestimating Carly from the get go. All I can say is~How wrong one can be?


Stephanie said...

I love the last paragraph of your post. I didn't know you didn't know Carly had Ds until after she was born. That must have been really hard. What do you think, better to know for sure , Have a really good idea(that was us) or not know at all?I wonder if God knows the best way for each of us.

Cheryl said...

This was a great post.I love what you say at the end.You're so right.

Lacey said...

Do you know what kind of DS Carly has? Jax has translocation, which only happens in 3% of DS kids and is the only one that is genetic. But with Jax it was just a fluke, so he is 1/3 of 3%, very unique indeed.

Sasha@ Blyssfulhealth said...

I found out prenatally, so a little bit different situation than you. I can't believe they asked how old you were. Ugh.. I love your last paragraph as well.

Leah said...

Your story sounds so much like mine. I was 34 my husband was 27 so what were the chances? I knew from the moment they held Oliver up to show us our new son that he had Down Syndrome, my words to be exact were "whats wrong with my baby? he looks like he has Down Syndrome!" my reaction still racks me with guilt but I cant change that, what I can change is other peoples perception of how amazing our little boy is. Sure some days I could pull my hair out but the majority of days my heart near bursts with love. I agree unless you've walked in our shoes you will never understand, in fact I think if they knew half of what we do they'd be envious *wink*