Thursday, December 11, 2014

The Choice

Ever since the Mad Scientist and I visited the funeral home at the urging of DQ's hospice staff, I've had some very heavy thoughts and emotions. I have been more sleepless than normal. Agitated. Unwell.

Actually, now that I think about it, the visit to the funeral home didn't cause me this consternation, but the follow up visit with hospice later that week has done me in.

Really, the visit to the funeral home helped me more than I expected and calmed me in a way I did not realize that I needed. It made me feel like I would be able to say goodbye as I needed to, in my own time. That comforted me greatly.

We were told that DQ could stay in our house as long as needed and when we were ready, the funeral home would pick her up in an unmarked van for our own privacy and comfort. They promised not to rush me and not to intrude in our home in an abrasive or cold manner. We were assured that the funeral home would take the utmost care of our precious daughter and that she would be treated in as much respect upon her death as we expect in her life. And she wouldn't be alone as she so greatly fears.

A couple short days later, the hospice social worker pulled the Mad Scientist aside and told him we had to think about organ donation. There wasn't much to think about though because we have always been in great support of organ donation. Donated tissues saved DQ's life as a baby!

But there was more.

If we want DQ to be an organ donor, she will have to be rushed away to the hospital immediately upon death. There will be no thoughtful, peaceful goodbye. The caring team we met at the funeral home will not be in charge. She will be in some ambulance, scurried off on a gurney, maybe even left in a hallway at the hospital as I've seen done tons of times before. She will be all alone and in the place that scares her most--the hospital.

Having to choose has tormented me in a way no other decision has before.

I know the importance of organ and tissue donation. I've begged people to become donors. I've been listed as a donor since I received my driver's license. I have friends whose children have been given a second chance at life because of organ donors and friends who have lost children because a donor could not be found. We considered heart and lung transplant for the Dancing Queen and if it had been safer for her, we would have probably done it. I have countless friends with their children on organ donor registries right now. I know how important this is! I want to donate the Dancing Queen's organs.

But I can't imagine letting her go immediately. I can't imagine letting her go at all, but having to agree to her being ripped out of my arms, taken from our home in an emergency to the place she fears most!!!!!!!!!!! That seems to defeat the entire purpose of hospice. What dignity is there in that?

And what could they use from her anyway? Her heart and lungs are already destroyed. Her liver and kidneys have begun to be damaged and will likely be much worse by that time. Her beautiful eyes would be the only real thing left to use. Yet the only organ that must be transplanted live is the heart. Why would she have to be carted away immediately, in such a cruel and heartless way?  No wonder it is so difficult to get people to agree to organ donation.

And before you start spewing vitriol in my comment section, I'm not writing this to get your opinions of what an awful person I am for considering to not donate my daughter's organs upon death or to hear what a hypocrite I am.  I'm already feeling that on my own. I'm also not writing to seek support for whatever decision we end up making. I just need to get it out there so I can let go and hopefully come to some decision.


  1. About a dozen year's ago, I volunteered once a week to perform patterning with Elizabeth who was five at the time. She had suffered severe complications from a difficult birth. Elizabeth, with beautiful blue eyes and curly dark brown hair was unable to talk, walk or eat. She was surrounded by three younger sisters who acted as if nothing was wrong. They played with her, talked to her and smothered her with kisses. There were seven teams of four ladies who worked with Elizabeth seven days a week. She brought us all joy. Elizabeth passed away at home surround by those who treasured her. When I went to the funeral home, there were tears. There was laughter, too, as we viewed sweet Elizabeth surrounded by those little sisters. Toys were strewn all about the floor. We had to step over and around them. Susan, a year younger than her sister said "Elizabeth is dancing somewhere". Susan proceeded to dance around the floor. I recently had the pleasure of attending Susan's senior recital. She played the cello beautifully. After her recital piece, she said she had one more piece to play and her sisters, Sarah and Emily joined her. The piece was "Let It Be a Dance We Do". There wasn't a dry eye for those of us who had known Elizabeth. Every face had a smile though. I'm not sure why I'm telling you this. I think it's because I want you to know that The Dancing Queen will always be loved and celebrated. I'm also sending all of you a hug and warm thoughts--most especially to The Dancing Queen.


    1. Thank you, Bonnie. I love this story. One of the best things the funeral director did for us was give us permission to make DQ's funeral anything that we want. He encouraged us to think of ways to include the children and make the service reflect her in ways that are not normally done at funerals. I picture butterflies, art work, and lots of music.

    2. That's good to hear since that's the way it should be. A precious life should be celebrated in the way it was lived!!

  2. In case you care to listen, here is Ric Masten with Let It Be a Dance We do.

  3. I've never met you or Dancing Queen, but your posts let me have a glimpse of a very special girl. And her smile makes me smile.

    1. Thank you. She is a very special girl with a smile that lights up the world.

  4. Aww sweet momma, my eyes are filled with tears. Sending you love and so many heart hugs.

  5. Whatever choice you make will be the right one. (I'm horrified to hear that donors might be left unattended at all, let alone in a awful!) Peace and love to you and yours.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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