Sunday, October 9, 2011

Etching Memories

I laid in my bed this morning, listening to my family playing games with each other. The laughter was infectious as my babies delighting in their pretend adventures as pirates. I ran downstairs; the crocodile in me had to chase Cap'n Hook. When I captured him, we all laughed. I reveled in the sounds and embraced the moment. I tried to etch it all in my mind so I would never forget; never forget the sounds, the smells, the visions, the feeling, the love.

I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.

I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.

Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer.  There is nothing to save her. NOTHING. nothing.

I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?

I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.

Today, I am making memories because these may be the only ones we get.

Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.


  1. I don't have any words of wisdom for you other than keep on doing what you're doing. Enjoy the Dancing Queen. She seems to embrace life any way she can. I hope that in a medical lab somewhere in the world someone is working on a breakthrough that will allow her to achieve all that you hope for her--and that she will one day hope for herself. In the meantime, store away every memory and bring them forth when you need them.


  2. {{hugs}} Keep fighting for your girl... you never know what will happen and what advances might be made in the future.

  3. sending hugs and good thoughts your way. xo

  4. ((hugs))

    Praying for you and your family.


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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