Friday, June 1, 2012

Am I Bad?

Is it wrong that in looking for a new home to buy, our forever home, I am consciously considering how the home will work when the Dancing Queen's health deteriorates? Is there a bedroom on the first floor for when she can't climb the stairs and is too big to carry (after all, she is 29 pounds now!)?

And should I be condemned because while she is busy planning how her new bedroom will look (pink and purple with butterflies), in the back of my mind, I wonder how much medical equipment will we have to fit? What would you think of me if you knew that I worry if we have steam heat that could pose a problem for an oxygen concentrator?

I love the look of hardwood floors in a home. But, now, as I look for our new home, I see hardwood floors as an added bonus because they will help keep down infections should the doctors decide DQ may qualify for a transplant (which is really the only option she will be left with someday, should someone decide she is deserving enough). Does that make me bad?

The Dancing Queen is doing pretty darn well these days. Since we set a new baseline, DQ is not showing signs of worsening. I feel like we are living a "normal" life, even if it is just normal for us. But I know we are on borrowed time (or is it just time?). Will it be tomorrow? A year from tomorrow? Five years?  Twenty? I'm planning for forever. And in the back of my mind, I'm haunted that we're going to build this new home and it will be home from which we tell our daughter goodbye. I can't help it. I want to believe that DQ will be here for much longer than me, but I simply can't believe it. I want to ignore that DQ has ever been sick at all, but that is not possible. I want to embrace that is doing better than ever before, but I know that will not always be the case.

I'm not planning on bringing in the medical bed when we move. But I also can't ignore the fact that we may have to do that in the future. And having these conflicting feelings is really hard. I don't want to plan for a future where my daughter is sick, but I nobody has EVER promised me that won't be her future. They've never even told me it is likely that it won't be her future (like is told to most of the parents of children with tetralogy of fallot). And believe me, I've asked.

Yet, I feel guilty thinking about the practicalities of a DQ's precarious future while buying a new house.

And now that I've said it, hopefully, I can leave the guilt behind?


  1. I hope you can leave the guilt behind, too, because I think what you are thinking and feeling is only natural given all that you have experienced. If anything, it says to me that she is so important that you want to consider her needs above your own as you pick your "forever" home.

  2. Those are just things you have to consider, it would be foolish not to. Kind of like if I moved myself and my grandparents into a home without considering how well a wheelchair would work there. Don't feel guilty for be prepared. After all, thinking about it now will make it easier when the time comes that you do have to deal with it. How much worse would things be if you *didn't* plan for it?

  3. I don't think you should feel even a little guilty. You're making sure that if she ever does deteriorate, you won't have to move her away from a bedroom/house that is home to her. You are 100% thinking of her potential needs, and that makes you an excellent parent. I know that you have to be constantly prepared for (and you have to prepare other adults for) the possibility of her having breathing problems/turning blue, etc. This is just another step along those same lines. Give her a room that is cheerful & cozy and functional is preparing for all the possibilities.


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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