Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Life With An Extra Chromosome (How It Began)

Our lives are pretty much like everyone else's. Except they aren't, because they're ours and not someone else's. So, I guess you can scratch that idea.

I guess we have aspects of our lives like many others. We all try to eat supper together most nights, (but sometimes Dad has to work late), and other times we have to gobble up a Peanut Butter & Jelly sandwich before heading off to a softball game. We try to do something special together as a family on Sundays, (the only day Dad has off each week,) but sometimes we wind up with one child in "Thinking Time" (our version of "Time Out") because she tried to color on the wall in the hallway, one child crying for his paci (that the dog took from him and is chewing on behind the couch), and the other asking to go to a friend's house (while texting another friend on her cell phone.)

So, I guess you could say we're normal. No, actually I don't like that word... I don't really know what "normal" is in this world. Instead, let's say we're "typical."

However, we're not typical. We have something about our family that makes us... well, us. We have an extra chromosome in our family. Rylee, our 5-year-old, has Down syndrome.

As you know, I started this blog because I love to write. And I love to take pictures. And I love to be able to ramble on and on and no one can interrupt me. But, I also wanted to share with you something... or, I guess more appropriately, someone, who took my life in a different direction.

This is how "Life With An Extra Chromosome" began for us...

* * * * *

July 10, 2003

Dear Family and Friends,

I hope everyone is having a wonderful summer! Jeremy and I have so much to tell everyone about our baby that we decided to share it with you in this way! (This story has a happy ending!)

As I finish out my 5th month of pregnancy, the sickness is finally finding it’s way to another expecting mom! Though my energy is very low, I am thankful to have many more good moments than bad! Thanks to everyone who showed concern during those tough months!

During a recent doctor’s check up, we were alerted to a problem. Testing revealed that our baby has a heart problem and the potential for further complications. The doctor indicated that it was serious enough that the baby probably wouldn’t live.

Upon consulting a pediatric cardiologist in a different city, (who spent hours with us on his day off providing a thorough explanation) the conclusion was far less dire. In fact, we were relieved to learn that not only is our baby’s heart repairable, it’s not even an emergency. If all goes well after birth, our baby can undergo heart surgery between 6 and 9 months of age and the success rate is high.

The final test results have revealed that our baby is a girl! Our little girl, Rylee Jayne, will be born early in December and we couldn’t be more thrilled! (First name Rylee, spelled so that the “lee” is after my dad Lee; and middle name Jayne, after a wonderful friend of our family battling cancer… both names are very meaningful to us!)

Also, Rylee will be extra-special, as she will be born with Down syndrome. Jeremy and I, along with our incredible families, are excited to welcome her, thankful to have her alive and are able to live what is predicted to be a healthy life.

We didn’t want you not to hear about it, perhaps say something and then later feel uncomfortable… or to hear about it and assume that sympathy is in order… when no one is feeling sad or in need of sympathy! Now that we know Rylee can live, everyone is happy!

The relationship between Jeremy and I has strengthened beyond belief, and we know the saying is true: “We can’t always control the things that happen to us, but we can control how we react to them.”

Just think, there was only one in 1,700 chances for us to have a baby with Down syndrome*… and WE were picked! We sincerely believe we are the lucky ones.

We can’t wait for Rylee to meet all of our wonderful family and friends. Thanks for being one of them!

Love, Jeremy, Carin, and Jordyn Griffith

* Statistics in 2009 are now 1 in 800.

* * * * *

Story to be continued...


tali said...

I remember getting that letter, and I got goosebumps reading it the second time around. You guys were lucky Rylee picked you, and she is lucky to have such a wonderful family. I'm glad you keep us a part of it!

Jeremy Griffith said...

I got choked up re-reading this!

Kelly P. said...

So beautiful written. I didn't know you all those years ago but I think you addressed the whole situation flawlessly. It's clear God has blessed your family abundantly with your sweet Rylee Jayne!