Cora's Pen Pal

Thank you all for the incredible outpouring of love and support over the past few months, but especially after the last few days since we learned we were coming home. I started writing this blog because, frankly, I had grown tired of the question, "how's Cora doing?," and I wrote it for the audience of 20-30 friends, family members and coworkers I thought might read it from time to time.

I have been moved beyond words by how many hearts Cora has crawled into through these writings. Whenever someone tells me they read this, I nearly get tears in my eyes. Because I have been able to connect with people, some of whom I don't know at all, I have been able to survive this experience. Sitting down at the end of the night and reflecting on my day has become my regular routine and it's allowed me to process so many of the thoughts and emotions I've experienced. Thank you for reading it, and for over and over again reminding me that we're not alone.

Cora getting better and coming home feels like a victory for all of us.

Today at the hospital was spent preparing for going home. I met with the pharmacist, had final sessions with the physical therapist and occupational therapist, and spoke with medical equipment providers.
It is starting to feel real that we are leaving tomorrow.

As happy as I will be to walk out that door with Cora, and as delightful as it will be to bring her to San Rafael, I would be lying if I said a part of me won't be sad. We have formed some amazing relationships at UCSF. You can't go through something like this and not feel bound for life to the people who cared for your child. Jason and I both often try to think of the ways we could express our gratitude to the people who really saved us. I've thought about putting a list on this blog. But then I would want to write a paragraph or two about every single one so you would know just how they poured their heart into helping Cora, and this would quickly become a novel.

One day I will find an appropriate way to thank them.

The other people we will miss most is the family we have walked with side by side since the day we landed at UCSF on November 7th. Their daughter was born the day before Cora, and they were right next to us in the NICU those first few days. Then they moved down to the cardiac ICU, and the next day we did too. On a Tuesday their daughter had her first surgery. Then on Wednesday, Cora had hers. Their little chests stayed open for a week, then they were closed on the same day, one right after another. Everywhere we've been, on every unit, they've been right there with us. They've never left UCSF. Three and a half weeks ago their daughter had another surgery, and two days later Cora had hers. Only last week, Cora turned and started to get better, while their daughter turned and started to get worse. And now we are leaving, and she is much, much worse.

I visited with them today, as I have done nearly every day for so long. They are facing terrible decisions, and are living life's terribly awful and incredibly unfair hand. As I held on to their little girl's leg today and petted her beautiful head of hair, I prayed for the same kind of miracle we've seen with Cora. It just isn't fair. Why should we be leaving and they be staying? Why should the thousands of prayers work in favor of Cora, but not in favor of this little angel who is so absolutely and completely worthy of saving?

Through all these months, I always hoped that one of us would walk out of the door, and the other one would be right behind. But the girls' little partnership isn't going to go that way, it appears. We have always joked about them being pen pals one day, although of course no child born these days will ever know what a letter is. But we promised to keep them in touch through the years, two special friends for life, who can relate to one another because they are special and they are survivors.

I don't know why I'm writing this all, on the eve of our coming home. There is of course so much joy in it for us. But there are people that have shared our world and become like a family to us over the past six months, and we will deeply miss them all. Some are caregivers, some just other families walking this impossible road.

We will always be grateful to each of them and will, I'm sure, feel linked for life. Cora's triumph is not just coming home. It's that she has indelibly attached us to the many people who have cared for her, to our community, to our families, and to love in general. I know that no one of us will ever be the same.