I found this sticky note in my jewelry drawer today...it brought me back to the worst day of my life. The day I realized that I would one day live every parent's worst nightmare. The realization that I would outlive one of my children. This day happened in late March 2012, it's taken me this long to even be able to blog about it. Not really sure why I'm led to share it now, but it's on my heart and finding this note, just let me know it's time.
Late March 2012...Lily was still in her hard pants (body cast) and initial genetic testing had already confirmed that she had some type of Muscular Dystrophy. We were waiting on muscle biopsy results to know what type. I had Googled her symptoms for weeks and
thought I knew exactly what type of MD Lily had. I was prepared, I could handle it. No big deal...mainly because the type I
picked wasn't that bad.
Lily and I picked the bigs up from school and hurried home. Mary Ashtyn and I were going with a group of her friends to see The Hunger Games. It was going to be a great night...one of the first times I had left Lily since her surgery and body cast. We were really looking forward to it!
My phone rang not long after we got home...not a call I expected on a Friday afternoon. It was Lily's neurologist with her muscle biopsy results. I grabbed a little sticky note that was already written on...fully prepared to write the name of the Muscular Dystrophy that I was ready for. As he began to go over the results, I realized my Google diagnosis was wrong...really, really wrong.
I heard Congenital Muscular Dystrophy, not good!! I had skipped over that type in my research, it wasn't good and I did not want to think about my baby having that form of MD. He said it!! I wrote it on my sticky note!! Then he says it may affect her brain...learning difficulties, seizures. He goes on to say that it is a rare,progressive type that will ravage every muscle in her body. As I wrote breathing and heart, I couldn't breathe and I couldn't see because I was sobbing. Honestly, I had not cried about Lily's diagnosis until this phone call. I think her doctor was shocked at my reaction because we had handled everything so well until now. In my mind, I just didn't think it would be this bad.
I hung up the phone, closed my bedroom door, fell on the floor and screamed, "not my baby" until Trent came home from work and picked me up off the ground. We read the sticky note together,cried some more and then started researching Merosin Deficient Congenital MD. (I did make it to the movies with Mary Ashtyn...swollen eyes and all).
By the end of the weekend, we had told our families the diagnosis. By the end of the week, we had found the president of the company who was working to find a treatment for Merosin Deficient CMD. Within a few weeks, we were enrolled in the National Institute of Health study for CMD. We were preparing for a battle that we were and still are determined to win.
The things I wrote on that sticky note should NEVER have to be written by any parent. No parent should have to worry about the things that we face on a daily basis. So, it's strange to say that as a family, we are thankful for Muscular Dystrophy...the bad kind! Through Lily and her daily fight with Merosin Deficient Congenital Muscular Dystrophy, God has healed our family. We are stronger and better than I could have ever imagined after that horrible day when our world changed forever.
The sticky note reminds me of the worst day...
This sweet face reminds me of the best days. The days we get to be her family, loving her and enjoying every second that she is ours.
The sticky note also reminds me how big God really is. After hearing the worst, it's amazing to continue to see Lily getting stronger and improving! God is in control, no matter the diagnosis.
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