Preparations

In a few weeks, we are having our big night celebrating Boston Children’s Hospital, Isabelle and our amazing runners. Our runners are preparing for the marathon with their training and disciplined mileage. This event is requiring lots of preparation which is being expedited by some incredible family and friends. There are many kinds of preparations I participate in daily. From packing my gym bag, getting the kids ready for the day, or preparing for a presentation, I am in a constant state of in between. That is a good thing. 

Tonight, a family is preparing to bury their niece, daughter, granddaughter and cousin. Another senseless victim of narcotics she succumbed on saturday night to an overdose. One of many that have plagued this town over the past few months. Tonight a mother is preparing for one more night without her son. 30 days later after he died when he should have been enjoying post-fontan life. All around me people are preparing themselves to walk through another difficult moment in their lives. 

And there is the preparation we are  starting as we slowly trudge towards open heart surgery number 3. Now I can see what is happening when she runs. I can see her lips turn purple at the drop of a hat or a few degrees. Her sister tries to get her to chase her around the rom and she can only make it around the coffee table. She doesn’t realize it’s because she has half a heart that doesn’t have the stamina to follow suit. I do though. I know I am looking at a toddler who is ready for this next step. And I am far from prepared mentally to hand her over once again. Oh I talk a good game, Dr. Emani rocks…we got this…but when I stop to think, my stomach twists into knots.

A few new developments since Izzie’s last surgery. She’s older. She panics when she sees a white coat. Or scrubs. She knows what they are and her fingers instantly grip my shirt in fear. She cries and looks to us to get her out of whatever situation we have her in. But the situations are to keep her safe, like the vaccines for RSV. Thanks to that vaccine we have been fortunate enough to fight off respiratory infections. She doesn’t know that it helped her she just knows that every time she sees Nurse Laura she gets hurt. Just like she won’t understand that we have to get her sleepy so we can see pictures of her heart, that the blood draws that will hurt her are so we can make sure she is ready for the surgery that will save her life. Surgery that will hurt. Chest tubes that will hurt. It all hurts and it hurts me to think about it.

I run in the morning not just so I can get back into shape but so I can feel for a few minutes (sometimes for longer) what it feels like to be Izzie. What it feels like to run and not be able to catch my breath. To have limitations. I run because I want to understand how she feels. And I run because I can. 

The overdose really gets me because we may lose our daughter to a physical anomaly that we never asked for. At the same time, no one asks to be a drug addict. No one wakes up and says “I think I will get drunk, yell at everyone and lose my job.” I woke up and thought “It will be different this time. I won’t make the same mistakes again.” And lo and behold- ia made the same mistakes. Any premature death feels senseless- whether it is from complications caused by a condition or self-inflicted. The result is still the same- a loss. And how do you prepare for that?