Parenting a Child with a Life-Threatening Condition – Page 3

APRIL 24–“The timeless, repetitive waiting.”

Well, today marks one year on the transplant list. On April 24, 2014, Caitlin wrote a blog post about what was ahead. And what was ahead has turned out to be a very long wait.

I was telling a friend that it reminds me of the beautiful show and Pulitzer Prize-winning book, (TALES OF THE) SOUTH PACIFIC. During WWII, a group of servicemen and women in the South Pacific wait to be called to war. The pace is languid, with many beautiful moments. Then, when the waiting period has begun to feel eternal—BAM!—the fighting starts, the planes take off. Everyone goes into action, the languid days over forever.

We’ve had some lovely days that we will probably, in some future time, look back upon with longing. But right now, Caitlin is uncomfortable; everything is a struggle for her. So we are ready, and hoping.

–Maryanne

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MARCH 6–Year to Year

I created this blog exactly one year ago this afternoon, which I realized when WordPress sent me a renewal bill. We were in Pittsburgh to complete the transplant evaluation. Caitlin had been sick all winter. Everything had changed, and we were preparing ourselves for even more change. I never would have really thought that a year later, we would still be waiting. But that is the reality of organ transplantation.

We like to keep the blog upbeat, so I don’t go into any real detail about what Caitlin goes through. In my last post, I referred to a difficult two-week stretch as some “not-great days.” Caitlin intensely dislikes drama of any kind, and does not like to call attention to her problems. But as we mark a year of this surreal time that is waiting for organ transplant, I’d like to toast my noble little bird.

She has been remarkably stoic her entire life. And I’ve been full of admiration, this past year, to see just how well she has coped with the kinds of issues we hope never to watch our children deal with.

I saw this quote by Maya Angelou the other day; it resonated with me:

Having courage does not mean that we are unafraid.

Here’s to Caitlin.

–Maryanne

JANUARY 15–Down By the River Allegheny

Today marks one month since we arrived in Pittsburgh! It feels like we’ve been here a long time, but the days go by very quickly, too. Christmas was festive and pretty in the city, and we were so grateful to receive fun packages and cards and notes from our friends and family, and a wonderful New Year’s visit from my sister and her family.

Caitlin saw her pulmonologist yesterday. As far as her wait goes….her score is pretty high for her blood type and chest size, or so it seemed when he looked at the list. Of course, that still doesn’t mean that a donor will come any time soon, or that another person her size and blood type won’t get on the list and be ahead of her. It fluctuates day to day. But it’s pretty positive.

A friend’s nephew out in CA was transplanted in December (after waiting 2 years!) and is doing really well.

I also had the pleasure, the other day, of meeting with a friend I made when I was here last year. Her husband was transplanted last January and he just celebrated his first year! They are a lovely young couple who have been through so much, and I hope that 2015 treats them very well.

It’s been frigid here, so I haven’t been out taking photos the way I’d hoped to. Still, I strung together some silly iPhone moments from the past month and made the montage, above.

Having Henry around is great. He makes us laugh every single day. He will be 11 in two weeks and we still MARVEL at how puppin’ CUTE he is. His presence inspires us to compose wonderful songs.

“You, me, and Henry, and Andy, and Nicky…. Down by the River Allegheny… Allegheny…”

—Maryanne

DECEMBER 19–Christmas in Pittsburgh

Here we are in Pittsburgh! All is well. We’ve settled in to our apartment. Christmas Eve will mark 8 months of waiting on the transplant list. And now marks a year since Caitlin has been in need of one. Last December, she bought herself a tree, brought it home, and decorated it—-then caught the virus that “broke the camel’s back.” The tree was beautiful! Here it is:

We arrived in Pittsburgh on Monday. The city is festive and our apartment is comfortable. Caitlin and Andrew decorated the tree. For the first time, we have colored lights, but this is a different kind of Christmas, Caitlin says, and it’s all about doing new things.

I can tell you that there is great relief in knowing that we are close to the hospital, and I no longer need to keep the emergency list of medical transport services with me at all times.

Happy holidays to everyone! I’ll post some photos of Pittsburgh in the coming days. It’s an interesting place.

—Maryanne

SEPTEMBER 4–Any News?

The question we are hearing lately is, “Any news?” The answer is “No.” There’s no updating or anything that happens. You basically just wait for the phone call.

August 24 marked four months on the transplant list. We are grateful that we were able to spend the summer here in Boston! We always tell ourselves that our situation could be a lot worse.

This month, we have to travel to Pittsburgh for Caitlin’s six-month checkup. Since she cannot fly commercially anymore, we have to make a road trip out of it. While we are there, we will look for a place to live, as we will have to relocate there once the bad weather comes.

Since we had to stay within that four-hour window to get to Pittsburgh, we were unable to go to any of our usual summer spots (We hope to see you next year Maine, Vineyard, Ireland). We did spend a weekend “on the water,” at an inn at the yacht haven on Boston Harbor. The weather was spectacular and our room had a spacious, comfortable deck. Look at the name of the boat that was tied up just outside!

–Maryanne

June 13, But It Feels Like April….

..because we aren’t experiencing time in the normal way. It was just Christmas, wasn’t it? The real beginning of all this. Yet now it’s mid-June. Summer solstice time. We should be planning trips to the Cape, the Vineyard, Maine.

The other day, Caitlin, driving, said, “I keep thinking it’s April.” The sky was dark with approaching rain. The air was unseasonably chilly. April seemed plausible.

We are not complaining. This is just an update. We are grateful that we can wait here, in a city like Boston. Andrew is here at the moment, down from Maine, and he and Caitlin share a great camaraderie. Nick and I are doing a lot of things we’ve always meant to do in Boston, like biking all the way down the Esplanade, and wandering the North End early on Sunday mornings.

–Maryanne