Monday, December 17, 2012

The Life Gift- A Very Special Post


I have a special blogging friend, Nancy, from Felt So Fine. She is an amazing writer. She and her family have been through an incredible journey over the last year, which I asked her to guest post about and she kindly shares in this moving piece. My sister in law has had her life saved by a kidney transplant. My younger sister is headed for a heart transplant. I hope as you read Nancy's story you will consider becoming an organ donor if you are not already. In this season of giving, there is no greater gift than the gift of life.
 
 
 
It’s been one year.

 

One birthday.

One summer vacation.

One first day of school.

One Thanksgiving.

 

One year ago today I put on my brave face and kissed my son goodbye, then watched as they wheeled him away to the operating room.

 

To take out his heart.

 

Fifteen weeks earlier, with a sparkle in his eye and a bounce in his step, Spencer walked up the school steps and into his classroom for his first day of kindergarten.

 

Four weeks later, our faces etched with worry, we cradled him in our arms as we passed through the doors of the Emergency Room.

 

“What could be causing this stomach pain?” We asked them. “He just hasn’t been well for days.”

 

An ambulance ride to the Children’s Hospital two hours away and then the diagnosis.

 

I was alone when the doctor dropped the bomb that shattered my world, “It’s his heart. Your son is a very, very sick little boy.”

 

Fifteen long minutes later, Matt arrived and we tried desperately to comprehend what they were telling us but it was just impossible to believe.

 

“His heart is failing and we don’t know why.”

“He needs a new heart.”

“He might die waiting for a heart.”

 

No. Those words are impossible. He’s only five years old--the blink of an eye to my mother heart.  Just last week he was riding his bike and so…ALIVE.

 

But impossible or not, this was real. And this was our life now, so we took up residence in the cardiac ICU of that beloved hospital.

 

We lived minute to minute. Operations were performed to buy him some time. The Berlin heart, not yet FDA approved, was attached to his dying heart to buy him even more time. 

 

After weeks of holding our breath, we finally dared to breathe. Doctors and nurses began to smile for the first time.  He was critical, but stable.  No more ECMO. No more ventilator. The Berlin was a miraculous gift of time. Time that we so desperately needed.

 

Because we were waiting.

 

Waiting for something that had no schedule. Waiting for something that had no guarantee. Waiting for something—the only thing—that would allow us to take our only son home.

 

A new heart.

 

The wait was excruciating. I had to put it out of my mind so as not to lose my mind. Don’t think about when or if, just be grateful for today.

 

Days became weeks became months. We celebrated Halloween and Thanksgiving in the hospital and now Christmas is coming.

 

But he’s still with us, so we’ll be grateful for the chance to wait.

 

The wait became more frightening as his own heart grew closer and closer to its own final beat. We were in a race against time, with no control over the outcome.

 

What do you pray for in a time like this? Certainly not for the death of a child! Not mine. Not theirs. But we need that heart.

 

So I pray for peace.

 

Peace for us while we wait.

 

And peace for a mother and father who will face the unimaginable grief of losing a child.

 

Peace for them in that horrible moment when a doctor gently asks, “Have you thought about donating your child’s organs?”

 

Oh, if they could only see him! Would it make their decision easier?

 

And still, we wait.

 

And pray.

 

And then, the call.

 

“We’ve found a heart for Spencer!”

 

Joy and fear! Relief and worry! The longest of long days.

 

And as they wheeled him away I thought my heart would break.

 

~ ~ ~

Today is beautiful. It’s finally snowing outside. It will be a white Christmas after all. He’s building a snowman and teasing his sisters and drinking hot chocolate. And smiling.

 

And he gives me a hug and I think my heart might burst.

 

One year.


 
And we have been grateful every day for every beat of his beautiful new heart.

65 comments:

  1. God bless them, Shelly! I have been an organ donor all my adult life. It's the right thing to do and everybody should become a donor and help save a life or two or three.

    Nancy wrote:

    << I had to put it out of my mind so as not to lose my mind.>>

    I have been tossing and turning every night since Friday, unable to sleep, tormented by terrible images. If I am suffering to this extent I can only imagine the hell 20 sets of parents in Connecticut are going through. I urge all of Shelly's readers to donate to the support fun that has been set up at a local Newtown bank. Those families need our help. Details are online. Thank you!

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    1. Shady: I'm still shaken by Friday's tragedies. It hurts so much to think of it. As a teacher and a mom, it forces me to think the unfathomable.

      The best way to hit back at such evil is by doing good things. Just like in Nancy's story, good can come from the awful, if we just let it.

      And thank you for already being an organ donor- such a simple act on our parts could make such a momentous change for someone else.

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  2. This post squeezed my insides. Praise to God for Spencer's miracle! The perspective I gain from a family's journey with young children fighting for their lives has changed me. Every moment of health and "normalcy" I enjoy with my family is made precious and not to be taken for granted. Dear Nancy, Spencer and family: Merry Christmas and a Happy New Year with abundant blessings of God's love. I'm so thankful for your sharing of this story; it helps me to appreciate and celebrate this season with my Children and not slip into my usual Grinchy attitude.
    To Shelly and Family: Merry Christmas my beautiful friend! Sending much love and thankfulness this year and always!

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    1. Jenny: Amen to that, my friend! And a very Merry and happy Christmas to you all- gratitude is one of life's best seasonings.

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    2. Merry Christmas to you too, Jennifer!

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  3. Shelly, thank you for the reminder of giving the special gift that keeps giving. This is a very special blog post, Shelly. I pray your sister receives her "life gift" soon. I am having to put some things out of my mind, too. I am a little lost for words now.

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    1. Cindy: Thank you for your prayers. In all the hurt we feel from Friday's horrible turn, I am thankful that we have today, and with it the opportunity to do the most good we can.

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  4. Beautiful story of hope and joy. Thanks for sharing it!

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    1. Linda: Nancy and her family have been such inspirations to me~

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  5. Nancy--(and Shelly) Oh, my gosh, the day before Simeon's surgery on his kidney/ureters....I'm bawling! Beautifully written. So much to be thankful for and such a bittersweet for one parent to lose and one parent to gain, all part of God's plan, His Will, the cycle of death and life.

    Thank you God for this new heart for Spencer, he will do great things with this giving heart!

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    1. Jamie: Nancy is an amazing writer and communicator and I cried this morning when I first read her story. I am praying for little Sims~

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  6. Shelly a lovely story worth sharing. Thank you . Blessings.

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    1. Just Be Real: I am so very inspired by them and how their faith and steadfastness held them through such painful times. Spencer is an amazing little boy~

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  7. Very powerful. I am suddenly quite thankful for the health of my own family.

    Thank you, Shelly.

    Pearl

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    1. Pearl: Nancy is so eloquent. She also inspires me to be thankful my husband and children are in such good health, something too often taken for granted.

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    2. Thank you, Pearl for your kind words on my blog. Have a Merry Christmas!

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  8. Your posts always make me tear up, Shelly. Thanks for sharing this story of gratitude and health---two virtues that are often intertwined. You are a beautiful writer and person.

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    1. Saumya: Nancy is truly a gifted writer, and she brings out the highs and lows of the emotions in this piece exquisitely. You bring out a good point- gratitude and health are intermeshed so delicately, and we too often miss that point.

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  9. I have tears in my eyes. What a brave family and precious child.

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    1. Beth: They are an amazing family and Spencer is a walking miracle to me!

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    2. Thank you, Beth! He is a brave little soldier that's for sure!

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  10. This brought tears to my eyes second time I have cried this morning reading blog posts........

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    1. Jo-Anne: My tears today from Nancy's story are happy tears this time, for the miracle of Spencer. Nancy wrote this so well that it makes me have tears even after reading it three or four times.

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  11. I am so happy that a miracle occurred for Nancy and her little son. It must have been such a desperately worrying time for them all. I'm with Jo-Anne about the tears. I think we have all been feeling so emotional after those horrific events of Friday. Organ donation is SO important, and everyone should carry a donor card. Sending blessings to you my friend.

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    1. thisisme: It is so cathartic to shed tears over something so good and miraculous, instead of the horrible evil of Friday. Nancy and Matt were amazing all through this. I remember reading her posts and being awed by their strength. Thank you, friend. Organ donation is SUCH an important thing, and making people aware is sometimes all it takes.

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  12. Dearest Shelly,
    OMG, what a lovely boy and beautiful writing from your friend Nancy☆☆☆ Sometimes, we hear that the patient of taking organ donation going abroad. Dear Shelly; I DO pray for your sister's operation for the success!!!
    I don't have much knowledge about this but I appreciate this post for the chance to think about it, my friend.
    Be God with all the people in the world at this special time of the year.

    Sending you lots of love and hugs from Japan to my dear American friend, xoxo Miyako*

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    1. Orchid: Thank you, my dear friend, Miyako. It means the world! I had no idea until I began reading Nancy's accounts and my sister started with her process, just how advanced these transplant surgeries have gotten. What they can do nowadays is mind boggling.

      Have a wonderful week, my friend!

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  13. I've been following the Felt Family for just under a year now. Such an inspirational story.

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  14. I follow her blog also...the whole story is so amazing! and the pictures..oh my gosh...unbelievable.

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    1. Annmarie: It does my heart good to see where he started and then how he is now. Amazing!

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  15. So finely written! Every parent can understand the wrenching feelings.

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    1. jenny_o: Nancy is such a wonderful writer, and conveys so well all they went through.

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  16. This particular account I'm on now for my work I sometimes get patients who are sick like this little one, waiting for a heart. They are listed with where they are on the transplant list. I often wonder how it is as a parent waiting; now I know with you sharing this story, Shelly. I am sure very nerve wracking; I think peace is the best thing to pray for indeed. Yep, donor organ here!

    betty

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    1. Betty: You have a unique view, also. I'm so glad you are an organ donor already. It makes such a difference!

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  17. My heart felt like it was twisting as I read it. I really have been squeamish with the idea, which is ridiculous. I'll do the right thing.

    Shelly, thanks for letting her share this story. It gave me the push I needed.

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    1. Theresa: I was the same way before health problems hit my family members and we became more famliar with organ donation. And following Nancy's story as it unfolded has made me even more certain that it's the right thing to do.

      Good for you! Thank you!

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  18. Your sister, your sister-in-law, and your little friend Spencer, all had life-saving experiences, thanks to organ donors. I am also the beneficiary of an organ donor, though it was not life-saving, it was sight-saving, and I am truly grateful for generous people who think ahead to the lives of others after they are gone!

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    1. vanilla: They are the true spirit of generosity. I am thankful one was there for you, too~

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  19. Your sister's transplant yet to come. Praying for early procedure and quick recovery. (I read your statement right, but my comment was not completely accurate-- but it will be!

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  20. Nancy did a beautiful job of writing Spencer's story. My family and I did a great deal of praying while Spencer was going through such a terrible, uncertain ordeal. I know many many people prayed hard for that sweet boy. It's wonderful to know God answers prayers.

    Nancy was a pillar of strength throughout the trial and her faith was incredibly inspiring to me.

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    1. Crystal: I think for the rest of my life I am going to be inspired by the strength I saw from Nancy and Matt and their whole family in her blog posts. And yes, God was faithful to answer the many prayers that were prayed for that sweet boy.

      And hey- it's good to hear from Crystal Pistol again!

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    2. Hey, Crys! Thank you! Have a very Merry Christmas with your cute family!

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  21. Thanks so much, Shelly and Nancy, for the very moving and important reminder of how important organ donation is. I'm so very happy that Spencer has a new heart and is here this Christmas to build snowmen and tease his sisters! Thanks so much for sharing this!

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    1. Dr. Kathy: It is such a miracle, to know how very sick he was, and then to see the pictures and videos of him now. It just goes to show we should always have hope~

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    2. Kathleen, Thank you for your comments! It is a very special Christmas for us this year.

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  22. I too am an organ donor. I don't know if I have any part that is worthy. But isn't that the real gift of life! I think God would be proud.

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    1. Sandie: Good for you! And yes, I am convinced He is.

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  23. Shelly, Thank you so much for inviting me to do this. I am overwhelmed by all of the kind comments on your blog. People are amazing!

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    1. Nancy: Thank you SO much for writing such a beautiful, inspiring piece. I know it furthers the cause of organ donation, and with your natural eloquence, I believe you are going to be asked more and more to tell your story. You totally inspire me, my friend~

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    1. JBR: Thank you, friend! I hope yours is the best one yet~

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  25. I read this piece while sitting next to my very own five year old boy. Because he's just a boy, he's too busy eating his snack to see the tears rolling down my cheeks. Thankfully. I am an organ donor, and God forbid anything happen to my children, they will be donors, too. The hearts in my family fail, but not until they are the hearts of a grandparent. Not the hearts of a child. I loved the prayer for peace. When my father was dying of a heart attack, my very own prayer for peace was answered, and carried me through the pain. Thank you, Nancy, for sharing the story of your sweet boy. Thank you, Shelly, for introducing me to Nancy's amazing writing!
    -Amy

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    1. Amy: Nancy is so very talented, and I have a feeling that her talents are really going to be put to use in this new year to help promote causes like organ donation. Her story really helps me keep things in proper perspective.

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  26. Shelly, thank you so much for sharing Nancy's story, which is so touching. This is the beauty of blogging: Through this vast interconnection of hearts and minds, we learn so much and are reminded what is of value. Gracias, Tejana.

    ~Lorna
    _______________________________________


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    1. Lorna: I think for the rest of my life, this story is going to inspire me!

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  27. Shelly, I can see why Nancy's post here is so riveting. Oh, I do hope and pray that Spencer is well and happy, and that both families have the peace that she spoke of.

    On my next blogging break, I will click over to her site and hope to see a photo of her son.

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    1. Anita: Spencer is a true miracle. When you do visit Nancy's blog, you will get to enjoy great pictures of Spencer and his sisters on their first day of school this year- so heartwarming!

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