While you may not have specifically known, it probably doesn't come as a big surprise that February is American Heart Month. February 14th in particular is National Donor Day. Valentine's definitely hits differently this year in light of Annika's transplant.
I've spent a lot of time over the past couple of days pondering Annika's donor. Was her donor a boy or a girl, a man or a woman? How old were they? How did they enjoy spending their time? Did they like animals? How about stuffies? Were they obsessed with banana peppers? (Annika claims that she's always liked banana peppers, but she lately she's been eating them by the bowlful.)
Naturally there are harder questions that pop into my mind as well. Did they have a family? Siblings, spouse, children, nieces, nephews, cousins? How is their family coping with their loss? Was their passing unexpected? (Probably.) How did they die? (I pray they didn't suffer.) Are they at peace? Is there any way our family can offer comfort?
Last night, I watched Return to Me. It used to be one of my favorite movies, but I haven't allowed myself to watch it since Annie's initial cardiac arrest in December 2022. I was all by myself, so I indulged and let the tears come--so many tears. I cried so much that when I dropped the remote control and it fell part this morning, I discovered that the inner battery compartment was still wet from my tears.
The reality of transplant is very different from how it is portrayed in the movies. Annika obviously wasn't waiting for transplant on her death bed with blue lips like Minnie Driver. However, when Minnie Driver imagines all the things she'll be able to do with a new heart, she dreams of riding a bike.
This is our dream too. I can't wait for spring to come so I can see Annika ride. A few months ago we were researching e-bikes for children. Now I wonder if I will be able to keep up.
In honoring National Donor Day today, I feel a little sad. My own heart is heavy as I grieve with our donor's family, whoever they are and wherever they may be. I am mindful of their loss, even as we celebrate Annika's renewed life. Our families are connected forever through this shared heart.
I think of their gift every time I feel Annika's heart beat. It took a little while, but I think this special heart is settling into its new home. In the immediate days following transplant, you could see Annika's chest heave with every beat. The veins in her neck were grossly distended. Her pulses were bounding and her blood pressure was so high. It felt as if her transplanted heart was protesting being torn away from the person it loved, and was literally struggling to get out.
Two months later, and this shared heart beats calmly. The blood pressure looked so good at yesterday's appointment (102/68) that the medical team cut Annika's dose of amlodipine in half. Just this morning this transplanted heart helped a spunky little sixth grade girl walk to her elementary school to swap Valentines with her classmates. We'd nearly made it home before I realized how monumental this moment. Walking home from school had become nearly impossible for Annika. She had to take so many breaks and was so miserable because she was in so much pain. Today she ran the final few blocks.
By choosing to donate, you don't just give an organ--you donate life. How do you express enough gratitude for the gift of life? A huge part of the movie Return to Me revolves around the letter sent by the transplant recipient to the donor's husband. Minnie Driver waits an entire year to post it because a thank you note feels far too little for a gift so big. I get that.
We haven't posted a letter yet, but we will. I'm a bit torn about how much to involve Annika in the process. It's a heavy thing to know that somebody died so that you could live. Her prayers for her donor and their family are so tender and sincere. She is extremely grateful for this tremendous gift, but it's also a gift she never wanted. She didn't want to have cardiomyopathy. She didn't want a transplant. She just wanted to be a kid and go to school and play tag with her friends and hold lizards, just like every other kid. At the moment, her relationship with transplant is complicated. Thanks to this incredible heart, she can run for the first time in her life. However, because of this transplant, at the moment she can't go to school or hang out with her friends, plus holding lizards is off the table indefinitely. She's grateful, but she's also lonely and grieving all the ways her life has changed forever.
The other day, I spoke over the phone with the parent of an older heart transplant child. (On social media, these kids are often referred to as "heart warriors.") Her daughter is now Talia's age, having had two transplants, one as an infant, and a second five years later. She confided how her daughter has faced major mental health struggles. For many years it seemed like her daughter was fine--the poster child for heart transplant success. Beneath the facade, however, she was feeling crushed by the weight of being perfect in order to honor the lives of her donors.
While deeper and more meaningful, February 14th won't ever be the same to me, just as Heart Month will always feel complicated. For the moment, I would prefer to carry the debt of gratitude for Annika so that she can feel light enough to play and sing and be a normal kid again.
To our donor, thank you.
***
Heart Love:
A Valentine's Tribute to Annie's Donor:
6:45 am. Attempt to wake Annika up by unlocking the gate and allowing Zion upstairs. Zion gave up too soon and simply settled in for a snooze.
7:15 am, report to Primary Children's for an echocardiogram. Everything looks great. Here we can see Fred beating strong as Bluey plays in the background.
8:30 am blood draw to check tacrolimus levels and blood cell counts. When we got back to cardiology, they gave Annika this beautiful Minky Couture blanket to celebrate Heart Month.
Over the course of the visit, we met with two echo technicians, a medical assistant, the pharmacist, the pharmacy tech, the transplant nurse, the nurse practitioner, and finally the cardiologist. Annika left with a minky, a rose Lego set for knowing her transplant medications, plus refills for twelve different prescriptions.
Trying out our beautiful blankie at home. Definitely gives off American flag vibes as well.
At home we enlisted Eli's help and his 3D printer to make 51 twisting hearts as Valentine's for Annika's sixth grade class. I wondered if giving out hearts might be a little too much given recent events, but decided we could get away with it.
Waiting for her classmates outside.
Zion came along.
Happy Valentine's Day!
Walking home pain free.
Happy Heart Month! Thank you for sharing your love.
