Special Delivery

I got home yesterday evening after a long doctor's appointment with my 6 year old, Liam. His heart is too small to safely do the surgery he so desperately needs. Crazy, right? They can do open heart surgery on a newborn and yet the procedure he needs to have done is too risky for his heart size. We need more time. It's such a gamble. Do the procedure too soon, you risk death. And everyday that we wait we risk sudden death.

I do not sleep well at night anymore. Last night I took half  of a sleeping pill and still sleep eluded me. I have a permanent migraine. I cannot turn off the anxiety, the questions, the worry. I feel like if we do it too soon, it will be my fault. If we wait too long, it will be my fault. This of course is not true. But, I have to have control of things to make me feel sane and normal. And this one... is in God's hands. I can scarcely handle that this is what it is. I have no control. All I can do is take care of my son and pray. And then pray some more.

To buy us some time he will be wearing an event monitor 24 hours a day for the next month. This is legit, it comes with a cell phone so the monitoring company and doctor can reach us at all times. The Cardiologist let me know we will be talking a lot. Then we will start Liam on a beta blocker twice a day to slow his AV Node. Hopefully all of this will let his little heart grow so this amazing surgeon can get in there and fix it.

As I pulled into my garage last night, UPS pulled up. The man came into my garage and handed me our special little package. All of Liam's heart monitoring equipment. Sometimes the reality and weight of this situation comes crashing down on me like a ton of bricks.

When I was younger I loved amusement parks and their super fast, twisting, turning, dropping, upside down thriller rides. I hate them now. I feel like my reality gives me that sinking, dropping feeling in the pit of my stomach everyday. My life is a roller coaster with its ups and downs, twists and turns. I don't need a roller coaster for the thrill anymore. Just living gives me that. I remind myself every day that I wake up that life isn't just to be endured; it is to be enjoyed. Some days I find it easier to enjoy than others. But I always thank my Heavenly Father for allowing me the gift of the ride.