P.S. Forever Thankful

On a more serious note, I’m sure many of you are craving, just like we are, more details about the origin of Hope’s donor heart. We are given extremely little information about the donor out of respect for the grieving family. We don’t know how old the child was, the sex of the child, the location of the heart, the mode of transport to Children’s or any other identifying details. Apparently, there have been some families in the past that have searched for the donor family the same day of transplant and tried contacting them, which is obviously completely inappropriate and disrespectful of the grief that family must be feeling, however well-intentioned. The proper communication process works much like adoption. Both parties need to communicate to the neutral third party, the organ donation group, that they are open to communication. Only if both families submit agreement are they put in touch to communicate directly. We’ve been warned that there is a good split between families that are comforted by communicating with the organ recipient and those that find it too painful, so we shouldn’t get our hopes up that there will be a joyous reunion with the donor family. On the chance that they don’t wish to communicate, John and I thought we’d share our gratitude with the universe in hopes that in some way it reaches through the ether and wraps the family in a moment of comfort.

The excitement we felt when we were told there was an offer of a heart was immediately tempered by the realization that a mother and father were somewhere on the other end of this offer suffering such a profound loss it brought us to tears and we felt heartbreak like neither of us have experienced. In a moment when any person would be consumed in grief, this family had the capacity to make a decision to do something to help someone else and save several lives. Nothing can ever take away the pain of this loss, but we hope to help fill that space in their heart with the gratitude of a life saved by a selfless act to donate their baby’s heart. Every year on 11/12 we will celebrate the life of the unknown (for now) donor as a way to honor this gift. We are overwhelmed with gratitude and pain simultaneously and we hope that every day Hope lives is a tribute to their lost loved one. We hope that the donor family can know we acknowledge that the decision they made spared us the same reality they faced and for this we are forever thankful. They gave us Hope, both literally and figuratively; something we hope to share with them one day in person.

13 thoughts on “P.S. Forever Thankful

  1. I have always been an organ donor. It has never crossed my mind to consider my child’s organs being donated. Hope has brought a new outlook in my life, and something to make people aware of.
    I talked with the woman that was there for the CODA, and she really made me open my eyes about how you can’t register you child as an organ donor so that is one reason there are so few infant transplants. I for one, am very greatful for the family that thought about saving another child’s life! It really does take a special person to be so unselfish!
    I pray one day they can meet Hope and see the joy that their baby has life in a special and loving family!
    God Bless them in the most difficult time 🙏😇

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  2. These are the same prayers that I have offered up since I heard your news of the gift your little girl was receiving. Joy for the potential of the life that Hope was receiving and prayers of comfort and thanks to the family who made such an unselfish sacrifice. Happy thanksgiving.

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  3. Have been an organ donor for as long as was able to! Easy for me but I am sure very difficult for families of children to make that brave decision. God bless you & your family & the family that was able to help others during their grief

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  4. While it’s obvious you are excited for Hope to have received her new heart it’ also is apparent how sensitive you and John are to the family who donated their child’s heart and the grief they must be going through. Hopefully someday they will be able to be at peace with the decisions they chose.
    Glad to hear Hope is doing so well.

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  5. I thanked the world very often the past few days. I am overwhelmed with gratitude joy love happiness along with grief for the human baby that gave Hope a future.
    As an adoptive mom we celebrate the legal adoption day as Special day.
    Knowing that I would not have my daughter with out Kotis choice to allow that. It is the best gift I could Imagione ever receive , until this week that is!
    So no rejection signs????
    Thank you for allowing us to share so fully with you two. It has been a ride & a joy.
    I am So Excited to meet her as soon as POSSIBLE!!!
    Grand Auntie B

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  6. Oh my heart is so full! You have such wonderful words of gratitude and love❤️! Hope is pretty special and was sent to equally special parents! Love you all! This has definitely opened my eyes to the gift of organ donation!

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  7. I understand the bittersweet joy you are feeling, we felt the same with my mother. And of course, you’re handling it with the same strength and grace you have taken on this whole journey. Hope is very lucky.

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  8. My heart breaks for them and rejoices for your little family. I pray for Hope and pray for the family that lost their little one also. I am thankful and grateful. God Bless you all ❤

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  9. You have a beautiful, spirit-filled way of expressing yourself, Tess. There can never be profound joy without agonizing sadness – it’s the balance of life. We’re keeping your family and the donor’s family in our prayers – their selfless gift to Hope – and others – has surely pleased God.

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