Wednesday, March 18, 2009

Just had to share

I think as a parent of a child with Down Syndrome, a condition where over 90% of prenatally diagnosed cases are terminated, there is this sense that to say anything negative about our parenting experience could literally be putting lives at risk. Is it worth sharing the not so great parts?

There are a few reasons I keep this blog. One reason is to keep family and friends updated on the boys, another is to meet other parents who have children with Down Syndrome (we are quite the on-line community, wouldn't you say?). I keep it because it is a great way to preserve memories for the Charlie and Calvin. And last, I keep it because I hope that in some way it can help new parents of children with Down Syndrome.

My desire is to honestly share my experiences as a mother of two boys, one genetically different than most. I want people to see that we are just a regular family. That we do normal things. That our lives are not negatively impacted by Down Syndrome.

Our lives are richer for that tiny little chromosome. That extra 21.

But, today I will say it. I will confess that there are times that I wonder. I wonder what life would be like with two 'regular' kids.

I had this idea of motherhood before Charlie. I had visions of warm home-made bread, of clothes drying on the line. Cloth diapers and long walks in the forest. I had ideas of a tidier home, and a hot meal every night. Ideas of going to the park and watching the kids play on the jungle gym.

I don't mourn Charlie having Down Syndrome anymore. Down Syndrome is simply a part of Charlie I would never want to give up. But here and there, I will admit, I mourn the loss of a more regular life.

With a child with a disability there is so much emphasis on therapy, learning, development, health issues... Charlie is 3 years old now. He is in preschool! Where did the time go? Where is the laundry that was supposed to be hanging to dry? Where's the homemade bread and yogurt? What happened to mornings spent outside in the garden, dark soil squishing between baby toes? Where is that simple life?

Truth is, it was washed away in hours of therapy. It was burnt up driving to appointments. It was avoided for the sake of a child who cannot, even and age three, safely play on a jungle gym alone, or be trusted not to run into the street when spending time in the garden. It was set aside when the cloth diapers proved too bulky for him to learn to roll, crawl, or walk in.

I miss that ideal life sometimes. More so now that Charlie is in preschool 4 days a week, and Calvin and I have more time to ourselves. I see Calvin doing all these things at the tender age of 1. All these amazing baby things and I think how easy it is to simply guide a child's development as it unfolds rather than coax, prod, will it to come forth.

He's catching him, you know. Calvin is catching up to Charlie.

Sigh...

It is a different life we have. It is not what I had envisioned.

We've adapted. We've created something small and beautiful and wholly ours. It was a wise woman who once told me "There is more than one way to have a good life." She's right, you know.

It's just sometimes... sometimes those old ideas, those coveted ideals, they crop up and nip at the edges of your heart. They threaten to plague you with guilt for not having it all.

I'll be okay tomorrow. Tonight I just had to share.

12 comments:

Stephanie said...

These words are so true
"I think how easy it is to simply guide a child's development as it unfolds rather than coax, prod, will it to come forth. "
I feel those same words everyday.
Megan definitely gives me more work, I need to think outside the box for her....Olivia, I show it once and she does it, not much more than guidance is needed....
But for me and you, God intended us to see life from a different perspective, I still continue to question, why me, I am not good enough at this, I wanted it simple.
However, if I pictured my life w/o Megan I wouldn't be who I am today and that is definitely a better mother to my other children and a stronger person not afraid to fight for what is right.
HUGS to you! And very well written!

Cate said...

love this. so true. thanks.

Terri said...

Wow, I have tears in my eyes cuz I can so relate to every word you wrote (except for the cloth diapers-just not for me). Cameron will be turning 3 already in July (starting preschool) and it breaks my heart to think that I have missed out on his baby time going to appts. and therapy. I don't have the luxury of being a SAHM so I feel like I am losing out on a lot of time with both boys.

SunflowerMom said...

so well written, thank you for your honesty. yes, it is a different life- good and bad. i marvel at how easy things are for Ella, how quickly her babyhood is going. I watch Aidan learn and am just so proud of his rapidly growing knowledge. i too long for things to be eaasier for Sean, for just SOMETHING to be simple for him.

Mommy to those Special Ks said...

I had those same visions of motherhood and my first child was typical and it STILL didn't happen that way. I know there are days too when I wonder what life would be like if I never knew what an IEP was. Hmm Thank God for our Down syndrome community! :)

Kim said...

You ladies are so amazing. I have tears in my eyes just knowing you are out there to hear me, and understand. Thank you.

jenegie said...

Very well written. I have so many emotions about having another child and witnessing "typical" development. For now I am just amazed at all of the things Emmy has learned in 2 short years, it helps me stay in denial.

It stings though, when the feelings you are describing come to surface. Like when I take her at daycare and all the kids are ecstatic that "baby" Emmy has arrived.

I also loved what you wrote about feeling afraid to speak about these feelings because of the abortion rates. I also fear that people may not understand my feelings and just assume that I am too emotional, still grieving or that I don't love my daughter with all of my heart.

Thanks for writing this. You do a great job at expressing your feelings. I love your blog.

jenegie said...

Very well written. I have so many emotions about having another child and witnessing "typical" development. For now I am just amazed at all of the things Emmy has learned in 2 short years, it helps me stay in denial.

It stings though, when the feelings you are describing come to surface. Like when I take her at daycare and all the kids are ecstatic that "baby" Emmy has arrived.

I also loved what you wrote about feeling afraid to speak about these feelings because of the abortion rates. I also fear that people may not understand my feelings and just assume that I am too emotional, still grieving or that I don't love my daughter with all of my heart.

Thanks for writing this. You do a great job at expressing your feelings. I love your blog.

Lovin Mama said...

I think about these same things. I try to never complain because I don't want people to think its bad to have a kids w/ DS. Goldie is 2 now and I'm finally admitting that it is harder. I'm having to give up some things. I used to be the mom with laundry always hanging on the line. Now the dryer is my new best friend. I've learned a lot about compromise and I know there are more lessons ahead for me.

Laurie said...

Yep..."There is more than one way to have a good life." And what I always say is, "It's not wrong (or bad or worse), it's just different." We don't always get what we want or expect, but God still blesses.

datri said...

Hey, just wanted to send some {{hugs}}. Wonderfully written post.

Sharon said...

First of all, I just found your blog and have enjoyed reading about your two sweet boys. Second, I think we all have "those" moments...it's so natural to wonder the what-if's. But, most of all, I love the saying "there's more than one way to have a good life" - how very true. Having a son with special needs was not part of my plan - but our life is good...very, very good!

Related Posts Plugin for WordPress, Blogger...