Many of you know my niece Josie. Last week, my sister, Catherine, wrote a poignant piece while waiting for the latest rounds of tests for Josie. Josie is 21 and tough as nails. So is Catherine, although she clearly doesn’t see herself that way. As Josie’s aunt, I love her, and I know that her congenital heart condition is a chronic source of worry. But nobody can express exactly how a parent feels in the waiting room of a hospital, except a parent. The story that Catherine doesn’t tell is the story of how many hours Catherine spent waking to give meds and feedings in the middle of the night. That she moved a mattress, and then her master bedroom to a different floor to be able to better monitor Josie. That she spent hours every day drawing up medications and organizing them so that she would have the proper dosage on hand when she needed them. Actually, I am Josie’s pseudo-godparent. Not many people get a pseudo-godparent, but Josie has one. That’s because Josie was baptized in the hospital as a baby, and I happened to be there helping with Alex so that Catherine and Chris could spend their time at the hospital with Josie. She was baptized, not because of some antiquated ideas about heaven and limbo, but because her family wanted her baptized. And I was there. I am not sure who Josie’s actual godparents are, but that day I was godmother and godfather. And here is Josie’s story as told by Catherine last week:

I am posting this while I am still waiting for Josie to be done with her MRI. It’s a long read, so read if you like.

The time is passing so slowly sitting in the waiting room while my daughter Josie gets a MRI of her heart. This MRI will determine the next step in her heart journey. They are trying to determine whether she will have another open heart surgery, her 4th or if she can get away with just a cath lab where a new pulmonary valve will be placed inside her old one.

It has been 10 years since her last heart surgery. My mind has started to wander off into thoughts of another open heart surgery. Does she remember the last one and all the pain she endured or is it like child birth where you remember that there was pain but you forgot how incredibly painful it was.

In the back of my mind I have put my summer on hold until this day. I feel like I can’t plan much until we have answers. Even though I know nothing ever happens quickly in Josie’s heart world. We could very well be walking out of here with a wait and see strategy. The anticipation is what starts to eat at you. What will they say? What decisions will be made today? Will it be worse than they thought or better? So many questions if only I could stop my mind from running through them all and just be patient. So I write this note in the hopes of killing time and distracting my thoughts from running away from me. Not sure it’s working. For the love of God, when will she be done.

I will now let my thoughts wander through the 21 years that Josie has walked this earth. Well, she has only walked for 19 of those years but those first 2 years she fought hard to learn to walk. I will forever have this picture in my mind (which always makes me smile) of Josie sitting on the sidewalk, in front of our house, with her hand on her head in a kind of ‘woe is me’ moment after falling down during her many attempts at walking. She is just this incredibly strong women who has fought for everything she has ever wanted. Nothing comes easy for her. To this day she has not once said, “I’m done, this is just too much,” regarding any challenge that has been put in front of her. If I could be half of her strength and determination, I would be a better person. Holy cow, she is still not done. We are now getting close to her next appointment.

While in this waiting room I have watched people come and go. I let myself wonder what their story could be. What journey are they on? Did it just begin or has it been on going? Everyone has a story. Where will it take them and how hard will it be? I always throw an invisible, stay strong, to each family that I see. Hospitals are the worst, filled with the most incredible doctors, nurses and support staff in the world. Without them we would be lost and alone. They have supported us through these last 21 years when ever it was needed. They always kept us informed and explained everything as many times as we needed. They helped us to make the best decisions and gave us the best care possible either here at U of M or in Cleveland. Did she fall into the MRI machine?

I’m running out of inspiration and moving into impatient. Ugh!! I think they lost her.

I’ll keep you posted.