An Open Letter to Bee's Donor's Family
I wrote this initally for my daughter's medical journey group. But I feel it's important to share here. She had her transplant just over a year ago on June 16, 2016. She's the reason that I became devout. She has brought many into church or down on their knees in prayers or praise. So, to me, it's a no-brainer to share this with you all. Organ donation is a subject near and dear to my heart. It's what I breathe and sleep every day while I care for Bee. There are many appointments, medications, phone calls, etc. for her because she was so sick to before the transplant. She will never be normal but it will take her a bit longer to achieve her level of "normalcy." I'm very proud that she has celebrated another year with us. In that time, she has taught us more day by day. By the Grace of God, we have seen this important milestone.
Having a medically complex child puts you in a small community of parents. You talk more of g-tubes, therapy sessions, trachs, central lines than a normal person. You hear more of infusions, treatments, palliative care and see more pictures of dying children or posts honoring those who have already passed in a week than anyone wants to see in a lifetime.
It seeps into your soul. Their sweet faces are seen in your sleep. Their voices are heard in favorite nursery rhymes..."Johnny, Johnny? Yes, Papa?"
Or in a favorite song... "Don't worry about a thing..."
Each death is remembered no matter how close or far-- your child mattered. Your child was loved by all who met them. Your child is remembered.
With that being said, I pen this letter to a parent, I have yet to meet. Forgive me, for like me, it is not perfect but made with a whole lot of love.
Dear Family,
This week you don't want to talk to probably anyone, let alone us. Thursday marks the end to the most hellish year you've ever been through. I don't truly know what to say. How can I thank you for suffering as I have not? How can I thank you for bearing a burden we were almost called to carry? How can I sit here and thank you for the loss of your baby?
Instead, I will say that I pray for you every day. I pray for your sweet baby in heaven. You have given us everything. You have given us more smiles, more memories. You gave my baby life in a way I could not. Selflessly, you have turned both of our different pains into joy.
Her transplant wasn't glamorous like a heart. Most don't find bowel sounds to be music to their ears. But to my ears, it is a sweet as listening to Yo Yo Ma play Bach's Cello Suites. My sweet baby can go without hourly sugar checks now--which provides this tired mama with much needed rest. Her tummy is filled with formula, allowing her to try to eat real foods, instead of a central line accessed to allow veins to full of IV nutrition. One of the best things of all? Being able to see her beautiful face not covered in blood; not seeing her skin and eyes as yellow as sunflowers on a summer day from all the bilirubin in her blood. A functioning liver. There are no words to describe how beautiful it is or how much most people take liver function for granted.
Life is a beautiful thing in all stages. Your baby's life was beautiful long before it saved mine on June 16th. Most likely your baby's life was filled with smiles and happy memories much like ours before cancer and liver failure were painted into the picture. Because of your decision to let your baby be an organ donor in the toughest hours of your life, the beauty of your baby's life will continue to live on in those they helped. Like our baby, Bernadette. Because of you, she radiates joy and hope to all who meet her. "Bee" touches lives every day. She teaches people the beauty of life. The simple things. The beauty of watching Bee swim. The beauty of seeing her blow out candles on a birthday cake. Watching her relearn to walk again.
You're with us for it all. Your baby is part of our family. You're part of our family. And despite the sorrow, that is an incredible thing.
Your child is remembered. Your child is and always will be loved. We will always express gratitude for all you've endured to make our life more joyful. You are our heroes. Your cape is cloaked in loss. Your mask is stained with tears. However, there you were, in our hour of need, in your hour of sorrow, saving lives.
Much love, respect, and infinite gratitude.
From,
The Sanchez Family