I have sat bedside on my knees after almost losing Owen on many occasions. It is not lost on us how fortunate we are to still have Owen with us. To be able to spend each day with him. It's is terrifying watching him struggle to walk down the hall, to barely be able to eat and to be hooked up to IV medication to keep his heart beating. We watch him carefully and know that coronary disease is marching along in his heart. Praying we get a new heart before his stops. We have to balance anticoagulant levels, anti rejection levels and Owen endures more than any child should.
There is a survivor guilt that all transplant receipients face. To know that someone's child has to die so that mine can live. There is an indescribable grief that comes along with it.
We don't pray for the loss of another child, but that in someone's worst hour, they choose to save lives. I have seen both sides of organ donation and neither side walks away without being forever affected.
We are forever grateful to Aly's family for giving Owen the past 3.5 years of life. It is nothing short of a miracle that her hearts still beats on in Owen. From CPR to ECMO to cardiac arrest to advanced coronary disease. God has a plan.
We have watched so many children pass away to congenital heart disease. We have lost dear friends close to both myself and Owen. We have witnessed tragic loss. When one of these kiddos gets a heart offer there is celebration. Then an unspoken fear amongst families. We put on a brave face for our children but we all fear that they may not make it through the surgery. Most of these kids have been opened up several times and they are very sick. There are currently five kids on the unit with Owen awaiting heart transplants. Some waiting for over a year. These kids are just waiting for a miracle... for a family to say yes to organ donation in the midst of their worst grief.
Do not make judgements. Unless you are walking in someone's shoes, you have no idea what their journey is. Kindness. Compassion. Love.
16 comments:
Bless you well said 💓
My son received a human donor aortic valve
Thankful that there are donor families out there giving the gift of life!
Praying daily for your family!
Forgot to add that because of that persons selfless gift to my 12 year old son, my 16 year old son signed up to be an organ donor when he got his drivers license. He said that there was no way that he could not have, and shared his brothers story with the others there.
My mom had a kidney/pancreas transplant from a 15 year old boy when I was a senior in high school. Although, not a child, (she was in her early thirties),I still needed my mom around. We are very grateful that his mom decided to give my mom continued life. I'm sorry you are getting such negativity. Your family is in my continued prayers.
Well said. I commend you for responding so gracefully. It surprised me to see such judgmental comments because your posts are always so honest and full of compassion for others. Everyone is on a journey and I hope that your kind and informative perspective will help others grow in wisdom. Thank you for sharing Owen's journey.
You are so graceful. Love from New Hampshire.
Very well said! I couldn't imagine what you go through as one who needs to receive but my uncle passed away many years ago and my grandmother said yes. I believe his heart and kidneys went to people but im not sure as she has now passed and i can't ask her. In her worst hour she saved several people. The families wrote to her and thanked her for the selfless gift she gave. As a mom if something tragic happened to my little girl Id donate because my daughter cant take her organs with her.
Beautifully stated! I think because you are able to look for the positives in life, people attack. You all have endured so much and you KNOW how blessed you are. Most of us understand that and totally support you in this incredibly difficult time. <3
What a beautiful post. I've been reading for a few years, but never commented. It is thanks to you, the Binghams, other heart bloggers, and the Leong family at Chasing Rainbows that I have ensured that my husband, 18yo daughter, and other family members are all signed up to be organ donors. It is the opportunity for continued life and the gratitude expressed by the recipients that have made it clear if there is a tragedy, we will try to help others who otherwise could also experience a tragedy. It is incredibly clear in every word I've read that the donor recipient kids and the donor recipient's parents are praying for the donor children and their parents.
I was forever moved by the writings of Kate Leong after her son died and they donated his organs. Every blog post of hers is intense and amazing, but here are two that were especially emotional for me.
Here are her thoughts on her son's last moments and organ donation - http://www.kateleong.com/2013/04/the-end.html#.WHZGFNIrInQ
Here she writes about speaking to a Japanese TV host about organ donation - http://www.kateleong.com/2016/02/sending-promise-of-hope.html
Well put - I lost my SIL 20 years ago - her son who was 22 at the time spoke at her funeral - and he told how when living she was an EMS trying to save lives and in death she also saved lives as all organs she had went to someone including her skin. I am sorry that some folks do not understand the process - and would choose to make a comment to you such as was made. I for one will continue to pray for your entire family, for all the folks taking care of Owen and for the family who will make the decision to donate their child's organs when the time comes - that is in NO way praying for someone to die
I love her posts and read every one of them!
I so agree. When we pray for a heart or any life saving organ to come in time we aren't praying for a death, but for a match and willing family/donor. I believe all our days are appointed of God and I hoped that my son's would be longer and trusted God to do what was best for His plan. I'm grateful that a young man, in my son's case, choose to be a donor if the day came that he should pass on. I believe prayers affect people's decisions and I hope that your prayers are answered once again in your time of need.
I so agree. When we pray for a heart or any life saving organ to come in time we aren't praying for a death, but for a match and willing family/donor. I believe all our days are appointed of God and I hoped that my son's would be longer and trusted God to do what was best for His plan. I'm grateful that a young man, in my son's case, choose to be a donor if the day came that he should pass on. I believe prayers affect people's decisions and I hope that your prayers are answered once again in your time of need.
Exactly. Kindness, compassion, love. For ALL the people, the families, recipients, and those who have lost. Nobody would ever hope for another child to die. But it happens. And the absolutely amazing thing is people who love enough to let a piece of their child live on in the body of another, creating a living memory and sustaining a life. The fact that anyone could misinterpret the intentions of this woman's prayers for her child is astounding. Nobody ever has the right to think for one second they understand this journey, and the stress and fear that she must cope with daily, and the strength of this little boy who has gone thru a lifetime of pain and struggle. I am proud to be a part of their story, no matter how small. And I'll keep praying, not hoping for the death of another, but knowing when it happens, as it inevitably will, this sweet boy may be given the gift to continue his life, to eat, to play, and to make memories, and carry the memory of another in his heart forever.
I must say that I was horrified by some of the comments you received after your last post. For people to not understand how your child can so easily become ill and die if exposed to illness is an accusation based on lack of knowledge. Before my grandson's recent surgery he was kept home from school to avoid illness. These heart kids are so susceptible to illness and when they get even a common cold they are so much sicker than others and it can drag on for so long. I applaud you for being Owen's strong advocate for keeping him safe. And, no one could ever fault you for wanting a heart for your child. That is why so many of us are organ donors so that when our time on earth ends we can allow another person to live. How could anyone accuse you of wanting another child to die? That is a horrific accusation. People waiting for organs do not want another to die, they are just grateful that someone who dies was willing to share a part of themselves. I'm sorry you faced the harsh criticism especially after waiting SO LONG for a heart for Owen. Be strong, mama. Keep sharing your journey with us.
Beautifully stated. Four years ago while on vacation with us, my father-in-law passed suddenly and unexpectedly from an undiagnosed congenital heart disease. I'm the midst of our shock and grief one of the most precious gifts that brought us peace was that he was an organ donor. Our darkest hours brought light to other families and there is peace and comfort in that exchange.
Carry on Warrior Mama.
Glad I did not see those hateful comments, we all kept thanking the Lord that Aly's heart beat on. God continue to bless the Simmons family.
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