I heard the song Blessings by Laura Story around the same time that we were given Addie’s diagnosis. It is a beautiful song that reminded me of God’s love, care, and His presence during a really dark time of our lives. The words below mean the most to me.
'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
8 years ago today, a team of doctors walked in and gave us Addie’s grim diagnosis. “Aicardi Syndrome”. We knew it was going to be that but to hear the doctors say that and then to hear the words “I’m sorry” sent our world into a blur. Questions swirled in our mind. How would we make it? What was going to happen? What would her life ultimately be like? And here we are 8 years later… Nothing in our lives could have prepared us for the last 8 years. We’ve only survived by our love for each other and faith in Christ. Our mantra Us vs the World has served us well but I also think it masks the struggles that we face every day. In honesty and not being prideful, we kind of make this look easy but it’s anything but.
It’s hard to put into words the emotions that you feel each day for a girl who struggles so much. Some days you feel like a professional having it altogether and knowing what to do for her and other days are tough. One tough day for me was Thanksgiving day. We were in Tennessee for my brother’s wedding and had Thanksgiving dinner at a restaurant with family. Addie was not having any of it she just continually screamed. We tried everything that we could think of to calm her down and even tried to take her for a walk around the restaurant outside to reset the situation but to no avail. I left my extended family, Liz and my girls and took Addie to the car with her screaming all the way. I got her in the car and we drove around until we came across an open Burger King. I stopped and went through the drive through. The kid in the window asked me how my day was and 99 out of 100 times I would have said, “Great” but I just couldn’t bring myself to say that. Here I am in all my pride of being a VP for my company, a leader wherever I go, and having some major life experience (being on the wrong side of 35) and I tell the kid about my day and how I am just trying to get through the moment. I eventually pulled it together and changed the conversation to his plans for Thanksgiving but for that moment I realized I was a mess.
We parked in the parking lot and as I organized Addie’s food. I cried… Hard. I’m not even sure why but it was ugly. However, just as the Lord has been faithful to us all these last 8 years with the sleepless nights, scares, and heartaches, He once again showed His love to me again in my moment of disappointment and weakness. I happened to turn on some music and lo and behold the words that were being sung and the song playing was, yep you guessed it Laura Story and I caught the tale end of the words
What if a thousand sleepless nights are what it takes to know You're near What if trials of this life are Your mercies in disguise
One could certainly explain that away as coincidence but I ‘d like to think that Lord was reminding me of His love and letting me know that He’s present just as he has been these last 8 years of Addie’s life. We don’t know the why behind Addie’s diagnosis and we don’t know about tomorrow but we know we haven’t walked alone these last 8 years and won’t walk alone the next 8 either.