Not something I knew much about until I started dealing with its effects. How? Every time I see a picture of Maddie before she was diagnosed, I grieve. I grieve for that time of our life, before everything was so complicated. Every time I see her stare off to look at a pretty butterfly, I instantly go into panic mode wondering if it's a seizure. Every time she sleeps later than usual my mind goes to the unimaginable... I can't bare to even type it out.
The harsh reality is that even though there are days I feel strong and in control, there are also days that seem exactly the opposite. Most people have a hard time understanding these feelings since Maddie looks so "normal" on the outside. They assume because she is doing so well that these awful tumors and this complex disease are no longer lingering over her.
Unfortunately, this is simply not true. I am always waiting for the other shoe to drop. I try to be hopeful, but not naive. I try to be happy, but cautious. I try to be lighthearted, but aware.
Truth of the matter is, I always feel like we are at war with this disease. Whether we are fighting our own fight or joining with another family to help fight their battle. We don't ever let our guards down, we are always waiting and preparing for what's to come.
The only thing that keeps the fear from swallowing me whole is knowing we aren't alone. Although these feelings are very real, we have someone fighting along side us. He is stronger than this disease. He is capable of calming my vivid thoughts. And only He is able to calm the storms that lie ahead.
On the days that these thoughts pull me down, I think of the happiness there will be when one day I'm holding Maddie and know that there is no more sickness in her body and no more tears to be had. She will be healed and I will be free from these emotions and fears.
What a day that will be.