On This Day She's 6

“We know what your daughter has. It is called Aicardi Syndrome.” Average life expectancy: 7-14 years. November 9, 2007…that day was the hardest. That day was the lowest. After I caught my breath, I thought, let’s make the most of these 7 years. Then I thought, I hope they are a long 7.

Here we are today on Reese’s 6th birthday. Part of me wants to celebrate the wonderful year we have had, battling seizures, avoiding the hospital (yea!!!), smiling, laughing, using switches to communicate, growing, and loving. The other part of me doesn’t want to admit she’s 6…because that is one year closer to 7.

Now I know there are no guarantees. 7 is not the magic number. It’s just the low end of the average. But I don’t like it. It has loomed in my mind for 6 years as the age I didn’t want to get to so fast.

Back then, on that day, I thought these years would be hard and long and painful. And some of them have. But I had no idea the beauty and blessings that would accompany the brokenness. This journey has been ugly and beautiful, painful and joyful, gut-wrenching and glorious. We have come to know what faith really is. We have felt God’s peace in the midst of raging storms, and we have learned the meaning of true surrender. I think the greatest part of suffering is that it creates in us a desperation. And in that desperation, if we cooperate, we can find a beautiful friendship with Jesus Christ. Desperation will lead us somewhere. And I believe God allows it because He wants us to find Him and trust Him and know Him and really love Him. If we cooperate, we find true meaning and peace.

Truth is, 6 is not so scary. God has taught me that no matter what, she will be OK, and we will be OK. I’ve released my life and her life to our Creator. And there is so much freedom in that release.

In listening to Chris Tomlin yesterday, these words echoed like never before. They sum up what I’ve gained in loving Reese and what lies on the other side of desperation.

There’s a peace I’ve come to know
Though my heart and flesh may fail
There’s an anchor for my soul
I can say, “It is well”

It is well, Reese. You are well. We are well. Thank you, God, for giving us Reese. And thank you so much for 6 years.

Happy Birthday, Sweetheart!