Where do broken livers go?

I decided to get out of the house today and get some things from Target. While in the picture frame aisle I got a call from Annette our Donor Network Coordinator. I was happy to hear from her as the two little girls have weighed heavily on my mind these last few days. After she made sure it was an ok time to talk (as if her calling wasn’t the highlight of my day! Next to my lunch company of course), I took a deep breath, why was she calling me?

Then the sentence … I wanted to call you and let you know before you got your letter in the mail. Ugh the sick feeling in my stomach. What went wrong? Was it his heart or his liver? Please tell me not both.  Just tell me and get it over with.  Rip the band-aid off.  The little girl who received Owen’s liver was doing great … then she started to deteriorate.  She was put back on the liver transplant list and she just received another liver.  My gut was twisted … Owen’s gift had failed.  A piece of him died again.  I fought through the feeling and forced myself to thank the heavens that the little girl was still alive.

I had thought (and accepted) that his gift would be his liver but really he gave the gift of time.  The little girl would have died if it weren’t for Owen’s gift.  She still lives.

What happens to a “bad” liver?  Is there a Goodwill for failed organs?  Compost pile?  One of those garbage cans with the foot pedal that opens the lid?

Part of me wants his liver back.  If the little girl can’t use it, maybe someone else could.  I feel like I should bury it, like a dead pet or a time capsule.  It was apart of Owen, and I want it back.  If it could save a girl’s life, then of course have it!  But it doesn’t live within her anymore.  It was tossed away, broken.  Like a item you lend to a friend.  If it can be of use to you, please use it as long as you like.  But when you’re done,  I’d like it back.

I  have to absorb the news.  I find that I need to grieve the loss of his liver, almost more than him.  He died, again.  He was supposed to live on.  A girl’s blood flow through his liver.  This was the hope that I was living in.  This was the happiness I chose to believe in rather than let his death cripple me.  This was my crutch and it’s fallen out from beneath me.  Am I strong enough to walk without it?

After Annette shared this news with me I thought “well I guess we won’t be meeting that family.”  Why would the family even care to meet us anymore?  For us, it’s been the ‘happy’ event on the horizon.  Meeting the donor recipient families.  Now?  Owen’s gift won’t mean as much to the receiving family as the actual liver within their daughter.  Another dream I had for Owen, slipped through my fingers.

My mom asked me, “What would you do if you were in the other family’s shoes?  Would you still want to meet you?”  At first I didn’t know … I felt like I would be so overwhelmed and connected to the family of the actual organ.  But then I thought back to Owen’s story.  A NICU nurse, who worked on Owen the night it all happened, came through the line at the funeral.  She was so upset and just kept repeating how sorry she was; she thought she was going to save him.  She wished she could have done more.  My response?  But you DID help me!  You gave him time.  The very same word … all those that worked on Owen that night gave Owen the same gift that he gave another little girl.  They gave him a chance.  The little girl would have died without Owen’s liver.  She didn’t have time to wait for another.

If Owen had died that night, and his heart never started beating on its own, he never would have been able to donate his heart, liver and kidneys.  If not for the paramedics and nurses that night, he would have been just another baby who died in his crib.  But he is Owen, the little warrior, the color orange.  He’s so much more.

But will the family see life the same as I do?  Perhaps they will.  In the event that they don’t, then what?  Be patient and know that I am God.  Breath.  One step at a time.  It’s not something that I can control, so I need to let it go.  I will have my answer soon, and there won’t be much I’ll be able to do about it.  Breathe.

What did this do to the other family’s story?  What have they been through the past three weeks?  Transplant, rejection, another transplant.  I have to keep praying for the strength to believe that He sees the greater picture.  God knows what good will come of this and the meaning.  My job is to believe, be patient, be still.  Breathe.

While my heart is a little heavier today, I inhale hope for peace and I exhale my worry and questions.  In with the good, out with the bad.  Breathe.  In … out … in … out …

Love, Mel

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24 Comments

Filed under Organ Donation, Owen's Gone, Posted by Melissa

24 responses to “Where do broken livers go?

  1. Nancy

    Owen was so much more than a color or a warrior or a healer. His gifts were many and live on. Her body rejected Owens kidney but bought her time to find the perfect fit. Without it her family would have grieved this baby girl like we do for Owen. This may not be the path we thought his kidney would take but its not any less heroic. Be kind to yourself Melissa and remember this gift was not only Owens gift but yours and Dougs. Many parents are aren’t able to be as selfless as you both were.

    Xoxo

  2. Jeanette Mercado

    Mel,
    I’m sure you are feeling all types of ways right now, just be strong, like Nancy said above, Owen was more then a warrior, color, healer. He defenitely still lives on. We all think about him everyday, we pray for you guys everyday. I know this defenitely was not the news u wanted to hear, but hey at least Owen’s liver gave that little girl a chance, a chance to conitnue to live to hopefully soon receive another liver. Owen has touched everyone’s heart as well as you have. Be strong Mel, we all know u have it in you. Your a great mother. Owen must be so proud looking down at his wonderful mommy, wearing his orange little onesie.
    God bless you and your family.

  3. Amanda

    you said it just right, BREATHE. Keep being happy on the fact that he gave that little girl time. His fighting through helped save another and give her a chance to also fight through. I pray now for that little girl as well, that she makes it through. Hopefully Owen is by her side holding her hand when her parents are not. If he cant be a part of her to help keep her going physically, i hope he is there with her to help give her the strength to get through. As yesterdays post said Owen does now have his angel wings and even though he cant be with every child at once, I’m sure he’s holding strong by this little girl now. breath Mel. I’m sad for you that you had to feel another loss of Owen, but breathe. You said it just right he gave her time. thinking of you always and still sending strength your way.

  4. Nell

    Jake Appleton said it in his “blug”: “Owen will be with the kids in Children’s Hospitals across the globe. Obviously, he can’t be with all children at all times, but he will get my most urgent cases, because he’s the right angel for the job.”

    Owen was with this little girl because she needed him at the time. He got her to the place she needed to be and then there was another angel there to take over to allow Owen to go to the next child that needed him.

    He is with you as well. Take the time to breathe. Remember the gift that Owen, you and Doug gave. The gift that you continue to give by writing this blog.

    I hope that my thoughts and prayers continue to lift you up.

  5. Susan

    A friend of mine told me about your situation and I told her I would pray for your son and your family. When I found out you were considering donating some of Owen’s organs it was an amazing feeling for me. Fifteen years ago my son needed a liver transplant and from the day he was born we knew that was his only hope. I prayed for twelve years for the family that would someday make that impossible decision. My son now is 27 years old and is living a very healthy, happy, productive life. We did meet the donor family four months after the transplant occurred and we have had a wonderful relationship for the past 15 years. Each time we visit, Rita hugs Chase exactly in the same spot and keeps her hand on his right side just where her son’s liver lives in my son. We celebrate Thanksgiving together, send Christmas gifts back and forth, honor her son Gary’s birthday and they even drove 6 hours for Chase’s graduation from High School. What you did was amazing, there are parents all over our country praying for parents just like you, if ever faced with that unthinkable decision that they would make the same decision you and your husband made, to give life! From one mom to another I thank you from the bottom of my heart for what you did. Owen is a hero and he will live on in many hearts especially his recipient families. There seriously aren’t words to ever thank a donor family, but I know I will try for the rest of my life to thank ours!

  6. Kate

    Mel,
    The liver has over 500 functions and touch every part of the human body. The organ itself may no longer reside in her body, but parts of Owen have been released throughout her cells. He will always be a part of her, just as he is always a part of you, your family, and your extended family of the internet.
    I was thinking of you today, as I do each day, and I was struck with a wave a sadness as I thought how much you must miss that sweet little boy. I can’t even compare my own losses with yours and I marvel at your ability to breathe. You are such an amazing person, and I feel so blessed to meet you, although it was a tragedy that made it possible. Owen was so lucky in his choice of family, even if he only was allowed to be an earthly part for a short while. He must have known he chose the best for him, with people who could teach him what he needed for his short time on this plane, and who could be taught from his life as well. You are an inspiriation, truly.

  7. I just finished reading the last few months of your blog. God is an amazing God, and you are an amazing woman. Long live Owen. 🙂

  8. Amy

    While the gifts of a liver and heart are truly amazing, and helped Owen to live on physically, please know that Owen will never leave this Earth. He has touched the hearts, minds and souls of so many. I have told his story to many, and they have likely gone on similarly. Everytime we wear orange, particularly my daughter, I think of little Owen. His fight and your courage will give others the strength they need to continue, and he’ll live on in their actions, words and thoughts. Owen is most certainly alive – his spirit is everywhere.

  9. jody

    I read your posts and I have so many thoughts…then when I try to put them into words they just dont seem to make much sense. I read this post and the first thought in my mind was “Oh NO!” This just seems to be so unfair. I agree with what everyone else said and that Owen did give this little girl an amazing gift but it’s not the outcome you would’ve like to have had. I can understand your feeling of mouring his little liver that now too has died. I just dont understand the reasoning. It almost makes me mad. But as I have learned from you, it doesnt pay to ask the question “Why?” because it doesnt change the outcome. I know being angry about it doesnt change anything either, just wastes energy. I wish I could help you other than to say “I am praying for you.” As for the recipient family meeting you, if it were my child I would be forever grateful for the time that Owen did give and would still want to meet you and your family. I know a woman who has received two double lung transplants. Her first one she rejected after several years. She still recognizes the day she received that first transplant and is so thankful for that donor and his family. If not for him, she wouldn’t have lived long enough to receive the second. I hope very soon you will be getting contacted from the recipeint of Owen’s heart with great news and that is that they want to meet you. I can see you placing your hand over her heart and smiling feeling Owen thumping away in her chest. With each beat saying “I Love you Momma!”

  10. Nancy

    You are an amazing woman and mother . I have learned so much from you. I have learned how to have grace and strength in the face of devastating hardship. You are an incredible writer who gives depth and understanding to what it means to experience a tragic loss. You are touching so many lives. Thank you..

  11. You are so strong and incredible for being able to share your story and send it out into the internet universe. That says a lot! You are functioning. You are so incredible and I only hope that I am as strong as you.

    God bless. I will say a pray for you.

  12. You amaze me. You really do.

    I have wanted to share a song with you for a while now. It’s called Blessings by a christian song writer named Laura Story. It’s amazing.

    You can listen to it here on you tube. http://youtu.be/eOOFAaUGfRE

    I hope you like it.

    Also…I shared your story on my blog…I hope that’s okay with you.

    Still praying for you here in WA.

  13. Belinda

    Your attitude through all of this is just so amazing. You are helping me cope with the death of my own daughter who died 5 months ago. I’m amazed that a complete stranger could make me feel so much stronger, but you have. What an amazing personyou and little Owen are. I still picture Owen and Piper in Heaven discussing how cool it is to be a triplet with orange and purple (Piper’s color) all around them.

  14. Teri

    I was watching a TV show tonight……….John Hopkins 24/7. In tonight’s episode there was a baby needing a heart transplant. He had spent at least 1/2 of his life in the hospital waiting for a transplant. At the end of the show he gets the heart he so desperately needed. The chaplain said that the donors parents were the baby’s guardian angels for thinking of a stranger at the time of their child’s death. Made me think of what a gift Owen gave to the families that received his organs-even if one of the children could only use Owen’s liver for a little while. He still gave the gift of life. You and Doug allowed that to happen in the midst of your grief. Those parents will think of you and be thankful for you always!

  15. Melanie

    Melissa, do not THINK for ONE second that your donation did not help. I have a son, who rejected 3 before keeping one, he is almost 12. Do not think for a single second I did not think or thank the child…breaks for heart to even think that, another mom and dad feel THIS. Owen did his plan….God did his plan. We can all thank Him. Got Orange?

  16. Kate

    Mel,
    This morning I was thinking of you, and I thought, “it’s too bad they don’t have a radioactive isotope to identify all things Owen” You would stand in a special machine, see, and anywhere Owen had made it’s way into your body, you would light up (orange, of course). Not only would those two little girls light up all over, but the hearts and minds of thousands of people all over the world would be bright orange. Not to mention the hands of the parents who are reaching out more to their children because of Owen. Owen is beating in the hearts of so many people, that all you need to do to feel him beating is hug the person nearest you..he is there. The bundle of cells and tissue isn’t Owen. It never was. The essence of Owen is what lives on, whether you can touch it or not. It pumps through the souls of all who have heard your story, a transfusion of love and strength, warm and orange, and Owen.
    Love,
    Kate

  17. Nicole

    I only discovered your blog 3 days ago but I read it all in one night. I dressed my 6 month old son today in an orange shirt. Owen lives within many people. Take comfort in that. Lots of love from Florida 🙂

  18. C.H.

    Hello melissa. Im one of jakes close friends, i was at the funeral, and the dinner, but you dont know mw. I have a story to share about a friend of mine. Hes 16 now, just like me. When he was just a baby, he had 3 liver transplants. The third one finally worked. And he told me that he couldnt be more thankful to all of those donations because all 3 of them believed in him, all 3 of them gave him a chance. Never f that owens gift wasnt a miracle. Owen has done hundreds of miracles in peoples lives and i continue to pray for your family and his donations daily. God vless you melissa and i hop to meet you very very soon. Stay strong in the lord!

  19. I just discovered your blog today, but I read back many, many months and understand your story – Owen’s story. I am so terribly sorry that you have to go through the loss of a child and although I cannot relate to what you are going through, I will be here listening and healing with you. You can and will get through this… although the pain will never go away, it will get easier to cope with day by day… or so I hear at least.
    I just wanted to tell you that you have inspired me to hold my daughters (4.5 years and 16 months) a little closer and appreciate them a little more, because this blog comes as a reminder that life is SO precious. I know you don’t feel it, but you are most definitely a strong individual who is obviously committed to carrying on the legacy of one of her children. Hang in there, and keep blogging… your story has changed my life and will continue to change the lives of many others.\
    Take care. xoxo.

  20. Heather R

    Mel, I as well as many others have wondered. I’m not sure if I have missed it. But does Owen’s reason for death have a name. Are the Dr’s considering it a case of SIDS? Or is it something else? I don’t mean to dis respect if I upset you asking that. I apologize.
    With deepest love
    The Ryan family

  21. Leslie

    I look terrible in Orange…so I don’t wear it. :o)

    But for my job, I send out at least 100 e-mails a day. So I changed my font color to orange, in honor of Owen. Every time I hit send…I think of that sweet boy and your family. Be strong…celebrate life, celebrate Owen…celebrate his brothers, they will all grow up to be wonderful men…and Owen will always be a part of that.

    You are in my prayers that each day will bring smiles of joy for you and all your boys.

  22. Mel,
    i just wanted to tell you, I was a liver transplant coordinator for 5 years for the recipients, both adult and children. I now have my own set of triplets.(BGB, one triplet also named Owen) I just wanted to give you a different perspective. When someone gets an organ, it is a gift. A gift that allows a hopeless family to feel joy, happiness, and hope. You gave that to the family. Owen gave that to the family. Even though that liver is not in her, and will not remain in her… it gave them hope, when they most needed it. Also, each transplanted organ that either makes it, or does not make it gives the surgeon, and the transplant community a lesson. I would even venture to say that the organs that do not make it help them learn, perhaps even more than those that do make it. So, whether that organ is in her… it gave them hope, and bridged the gap for that little girl to get the organ that is working in her. This doesn’t mean that HIS ORGAN failed, it was HER poor little body that just didn’t receive it as it should have for whatever reason. Let me tell you that those parents, and that little girl will be as thankful for Owen’s gift, as they will be for the organ that she has in her. They were both a part of her. A part of her story, a part of her life… just as she is a part of Owen’s life, and Owen’s story. I pray for you nightly. Breathe, time will heal some wounds. You won’t ever forget… but the scabs will form, and you will I promise, you will be ok. It’s a new normal… but you are strong…Keep your chin up.
    Tiffany

  23. One more thing…. there are some books that help explain to children about death of a sibling, and also support groups for children that lose a child sibling as well. They can talk about angels and things that they feel etc. I’m guessing you have some in your area. I just wanted to let you know that is out there, and does help. HUGS!
    Tiffany

  24. Michelle

    I’ve only read this one post – I just happened across this as I was searching for something else, but I promise that I will go back and read your’s and Owen’s story. I just wanted to say, as the mom of a baby boy who will need a liver transplant some day, that tears are pouring down my face at the thought that you, who have made such a wonderful and selfless gift, are feeling like Owen may not be remembered or live on because his liver did ultimately did not work out in that little girl. You did everything that you could possibly do to save that little girl’s life – and it was saved, there’s no question about that. You are a hero, and Owen is a hero, and just knowing that there are people like you out there makes all of our lives, and particularly the lives of moms like me, better – that is a legacy. It may not be a legacy that you can touch and feel like an organ living on in someone else, but it is every bit as important. Although my son hasn’t been transplanted yet, I’ve gone down the path enough in my mind and chat regularly with dozens of moms of transplant recipients and I am virtually certain that the little girl’s family will still want to meet you and express their gratitude for what you have done, and that they will never, EVER forget Owen.

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