Looking back...

Tonight I was looking through my video's on my phone and ran across a video I had taken of Maddie. It was one of her first seizures that she had. I wanted to catch it on video in hopes of expediting the hospital process. I watched it tonight and all I could do was cry. At the time of the video I was still in denial that anything horrible was wrong. But now being on this side of her diagnosis all I can do is feel sadness and hurt. It reminds me that our life has completely changed since that day. Before we thought about dance classes, school, weddings and everyday activities of an infant. Now our life is full of doctors appointments, close monitoring, worry of the future...just to name a few. It's so easy to let myself think everything is OK because on the outside she looks so good and hasn't had a seizure in over a month. But it's nights like these that everything can seem so dark. I am reminded that my sweet, precious daughter has tumors on her brain and heart and will possibly have more on other organs as she grows older. It's a reminder that her life will more than likely be full of blood tests, MRI's, EEG and EKG's. It's a reminder of how someday I will have to explain to her why she has such a different life. It's a reminder that Chris and I have no choice but to be strong advocates for our daughter. But through all the tears and sadness, I am also reminded that Chris and I aren't alone... God is being strong for us when we can't. He is taking care of her like no one else can. And that gives me comfort in the times sadness. I wish this was all a bad dream, but it's not, so I will wipe away the tears and keep loving on my sweet girl like there is no tomorrow.

I somewhat hijacked this blog... I know this was intended for "Maddie updates" so I'll get on to the good stuff.

Maddie has been seizure free for over a month now. She seems to be developing very well. We took a trip to Boston in May and she traveled like a champ. I was so proud of her! She has a lot of doctors appointments coming up in July and then a trip to Dallas in August. So please keep praying for her. I am finally having surgery to fix my right shoulder on July 25th so we will also need a lot of prayers for that. It will be a big transition for Chris and my family since they will be taking care of her until I can heal. I was told that I could be in a sling for up to 6 weeks. I'm hoping and praying for a very quick recovery.

Thank you all for the prayers and words of encouragement. As always it's what keeps us going.


Love always,

Chris, Heather and Madilyn