Monday, February 29, 2016

Leap Day

I remember this day 4 years ago. And just like then, today I am so thankful for this day. Why?
See, this day is an extra day that we are gifted with every 4 years. For me, it means one extra, bonus day with this sweet girl. 
It's one extra day this year that I get to hold her, to kiss her hands, to sniff her sweet breath, to rock her and coo back and forth. It's a day we aren't guaranteed. It's a gift. 

Rare Disease Day

Did you know that February 29 is Rare Disease Day? How fitting to call attention to rare diseases on a rare day such as Leap Day! So, without further ado, here is a little more about our Rare girl!
Waverly was born with Miller-Dieker Syndrome. Her condition affects less than 1 out of 100,000 people. That means that there is a deletion of genetic material on her 17th chromosome. That caused her brain to be smooth, a condition known as Lissencephaly. 
As a result, she is severely delayed in all areas (physical and cognitive). What does this look like on a daily basis for us? She is fed through a tube that goes directly into her intestines and stomach. Her lungs are very weak, and we do multiple breathing treatments with her each day to try to keep them clear. She has multiple seizures a day. She is on an oxygen monitor at all times. She gets oxygen as needed, and is on a bipap (breathing machine) at night to help her breathe and keep her lungs open. We regularly suction mucous from her mouth and nose. We cath her 4 times a day to help her empty her bladder. She is on over 15 medications daily. She is non mobile and non verbal. She cannot hold her head up. She depends on us for every thing.
But want to know what it also means? It means that we now speak without using words. It means we don't take one day for granted. It means we love deeper and more fiercely than we ever knew possible. It means heaven is so much more real to us, as we long for the day to be with her in a healthy and happy state. It means that we have seen how real and strong our Lord is, because who can endure such things without His strength? It means we have known deeper sorry, and deeper joy, than we ever imagined. It means we have experienced how sacred and important life is, all life. It means we have known a love so pure and real that it points us back to our Father. It means that God gets the glory, because of His goodness. In short, it means everything.
Thanks for taking the time to read what Rare means to us today, and for those who love our family so well.

Sunday, February 21, 2016

The Other Side

The Other Side
She quietly confided to a few of us that there were some concerns with her unborn baby. There were some markers of a syndrome. Then came the extra amniotic fluid. Another indicator that there was something wrong. And then the waiting game. 
I identified so much with the worry of what happens when the baby is born. How long will I have with my precious child? What will life be like with all the special needs? What if my baby is healed? 
And then she went into labor. 
And we waited. And messaged each other. And prayed. 
Friends in prayer are a powerful thing. 
And it hit me. This is what it was like on the other side. To be patiently waiting for news of what was to come. It was surprisingly hard for me. I wasn't expecting the emotions. 
And then that precious little one was born. Healthy and whole. 
And we all rejoiced with her. 
And I crashed. 
I was on yet an other side. Seeing what it could have been like. A new baby, an exhausted mom, typical normal stuff. 
But our story was different. 
Two different "other sides". 
Same God on both sides.