A Little Something Extra

Monday, October 4, 2010

31 for 21... our new family

When you get a diagnosis that your child has Down syndrome, whether you receive that diagnosis prenatally (as we did), at the hospital, or after your child has gone home, you *usually* go through some sort of grieving process.  Why?  Because Down syndrome is horrible?  No.  But let's face it... we all have dreams in our minds about what our family will look like.  We might not count on our child becoming President of the United States, a world-renowned cellist, or a CEO.  But we believe that anything is possible for our "perfect" child.  So when we hear that our child is not "perfect" (by the world's standards), we tend to grieve.

I certainly did.  Should you feel inclined, you can go back to those months leading up to Micah's birth to find out bits of ways in which I grieved.  I received a VERY informed piece of advice from a friend during that time.  Andrea advised me not to waste time grieving the little things, like "Micah won't be able to ride a bike when he's five."  As she said, there's time to grieve that later... like when he's five... because I'll probably grieve it then anyway, regardless of whether I grieved it before he was born.  Andrea is a member of my "parents of kids with special needs" family.  There's a subset to that group, and it's my "moms of kids with Down syndrome" family.

Frankly, it's a family I never expected nor wanted.  I was pretty content living in my little "Christian moms of typical kids" family.  But I LOVE my DS family (yes, I know that's not "people first language," but give me a bit of grace here, k?).  I've met some amazing people, all because Micah has Down syndrome.  For example... we went back to WI for the first annual DS awareness walk in the Fox Cities last weekend (see pictures from Saturday's post).  The night before the walk, there was a small event at which Rachel Coleman (Signing Time) shared a bit of her journey.  At the event, I was able to spend some time with some women who have helped me A LOT during the past 3 years since we received Micah' diagnosis.  Meeting some of their children before Micah was born took some of the fear away.

Anyway... here are some photos of some members of our new family.

L to R: Jennifer, Sherry, Debbie, Melanie, Danielle, yours truly

L to R: Sherry, Maria, me, Melanie, Rachel Coleman, Mary, Michelle, Danielle, Debbie

Melanie (our vision-casting walk coordinator) and Rachel Coleman

Melanie and Rachel signing "elk" (if you were to sign "deer," your thumbs would be touching your head... for "elk" your hands are not touching your head)

Anyway... I'm grateful for all of you, my friends of little ones with designer genes.  You bless me beyond words.  I feel privileged to walk this journey with you.  And if you haven't been to a national conference yet, please consider attending next year in San Antonio.  I was blown away in Orlando at NDSC.  I kept thinking, "Wow.  I've never seen a group of parents more passionate about their children." (to those of you not in the "parents of kids with special needs" family, please don't take offense... it's just that when you have to advocate DAILY for your child, that passion you have for your child tends to grow).


Cathy said...

Great post! I'm thankful for you too!!! I would love to go the convention but not sure how the hubster would feel about going and I'm too much of a scaredy cat to go by myself. We shall see!!!

Anonymous said...

I love reading you posts. You have a beautiful family. I wish I had the support group that you do. I wouldn't give up the experiences my husband and I have gone through the last year as it has changed us for the better and opened our eyes to all disabilities. Your blog makes me feel welcome in the DS community.

Jonathan said...

Thanks for posting about this. I have learned so much from you and your posts and have seen you grow so much, too!


Emily said...

Lovin' this post! I love my DS families!

Michelle Z said...

It was so good to see you & the family this weekend! I've missed you around here!

Anonymous said...

I am doing research for my university paper, thanks for your brilliant points, now I am acting on a sudden impulse.

- Laura

Jen said...

First time here and you had me in tears with the first post. That's darn good writing. You are so right about how passionate us DS mommas can be about our little ones.