words are not enough

Yesterday was the 4-year anniversary of Annika's first transplant. This was the transplant from a deceased donor, a teen-ager from somewhere in Chicagoland. I've written the family 3 times, always passing the letter through Gift of Hope in order to maintain their anonymity. I've never heard back from them, but I'm not sure what I would expect to hear from them. I think I owe it to that family to let them know that their gift was important to us, that it has meant the life of our little girl. They certainly don't owe us any response in return. I hope that they would tell us, though, if my letters to them are just a painful reminder that they would rather not have.

Those letters are never easy to write. I wrote the first letter to them on a yellow legal pad while Annika was still in the PICU post-transplant. It took her quite a while to get off the ventilator (about 2 weeks), and there was plenty of time to sit in the quiet room and contemplate my own feelings about the transplant and their loss. But, still, my pen dragged heavily across the paper as I struggled to put into words the simultaneous gratitude and sorrow of that moment.

The second letter was written after Anni lost her first transplant to a clot in her hepatic artery. I wanted to make sure that they understood that their child had still saved Annika's life, and that Annika was still using the portal vein donated by their child to attach the piece of liver donated by my cousin. So, in the most literal way possible, she still carried a piece of their child within her.

The third letter was written after Annika's bout with PTLD. This letter was hard to write because we had again come face-to-face with the possibility of losing our child. I can still transport myself back in an instant to that scene of Dr. Whitington entering Anni's hospital room and saying, "Well, it doesn't look good." With every brush up against that unimaginable pain of losing a child, it's harder to know what to say to those on the other side of the gulf.

And now another letter is due, but carrying the news that Annika's portal vein has clotted and is soon to be replaced during the upcoming shunt surgery. It is the last remaining physical link to their child. I hope this year I find the words to make it clear that their child's link to us and our daughter goes beyond the sharing of flesh and into the realm of smiles and laughter and memories bestowed because of their generosity. It's a connection more emotional, more spiritual, and more long-lasting than can be measured in years of graft survival.

Comments

[allison]

Just a note to express how wonderful it is that you attempt to convey these things to the donor family. Certainly they will understand that there really aren't the words, but the effort speaks the heart.

[Yankee T]

Moreena, I am sure that your reaching out to this family has meant more to them than you could ever know. You and your sweet family are always on my mind.

[Phantom Scribbler]

You have a real gift for finding the words, even when words are not enough.

[Running2Ks]

You are so wonderful to keep sharing with them. They need to know how important their gift was to your family. Hugs to Anni and all of you.

[candace]

Moreena, I have too have written to the family of Mark's donor. With no reply. And, it's okay. So, I helped Gift of Hope with the Thank You card campaign, with one of the designs being my own. If you just want to send a thank you, and aren't sure about the words, that's why there's the cards. They are on their web site. Hope that helps. Always thinking of you and the family.Candace

[Annika]

I want you to know that I filled out my donor information the day I found your blog. And the first box I checked was liver. (Followed by most of the rest.)

[Amy]

You have a beautiful blog! I am Purple Kangaroo's sister, so I followed a link over.My mom had a kidney transplant four years ago, also from a cadaver. It is such a wonderful and yet sad gift--one of the greatest gifts one can give!

[Moreena]

Candace - Wow! What a great idea. I've never seen them over there, so I'll have to check them out. Of course, I will be writing myself. I always have to give it a shot, you know.Annika - Beautiful and wonderfulAmy - welcome!allison, yt, ps, r2ks - thank you for the encouragement. I hope that you are right.

[Jessica]

What a beautiful, beautiful post, Moreena....how incredibly touching.

[purple_kangaroo]

Wow, that would be tough. I know my mom still keeps in touch with her "kidney sister"--the woman who received the other kidney from the same donor. These bonds are unique.

[Rowan]

I know that the day will come that I need to write such letters. I still don't know how I will manage to find the right words.As phantom scribbler said, you do have a gift for words. I'm sure you will write from the heart.