Monday, July 25, 2011

The Dark Side of Being a Heart Mom

I promised myself that I was going to be more up beat on the blog as my last several posts have been very introverted and not necessarily happy. But I couldn't shake this feeling I was having. I kept coming back to the same topic. It is something that is never discussed (at least not in any conversations I have had). So, this post needed to be written.

* * *

I have a digital picture frame on my desk at work. I last uploaded photos to it just before returning from maternity leave when DQ was three months old (yes, I keep meaning to add new photos, but time just seems to escape me). I look at those pictures nearly everyday, but don't necessarily see them. But today, I did. I saw myself six years ago, five years ago, four years ago, even three years ago. I was young, so very, very young.
One of the very last pictures taken of me before the Dancing Queen's diagnoses.

I look at those pictures and I can feel how much I have aged in the last three years (most of it in the last two). I know how much more unhealthy I have become. And I hate it! I hate everything that the last couple of years have done to me, done to my face, my psyche, my stress, my butt . . .

But what's worse is that hating what the worry, stress, and fear has done to me, makes me feel like a horrible mother. I don't blame the Dancing Queen for any of this, but if she wasn't born broken, born so very sick, I wouldn't have aged fifteen years over the last couple. I likely wouldn't weigh more now than I did when I was pregnant with her.

How can I think such things? Afterall, DQ is the one who has suffered so very much. Not me! She is the one who faces the rocky future, filled with more surgeries, too many pokes, and endless tests, scans, and appointments. I am not staring down that fate.

I wish I could take all of the pain for her and I would, if I possibly could. And yet, and yet . . .

I hate how I have changed for the worse since DQ was born.

Yes, I know, I have changed for the better in so many more ways. I have changed in ways that matter more than looks, grey hair, and a big bottom. And I would never, ever change anything about DQ. How could I? She would never be the same little girl that I love with all of my heart. And I would do it all again without hesitation. That little girl is my world (along with her brother and daddy).

But, when I see pictures of the person I used to be, I wonder how much better our lives would be if DQ wasn't broken. And I hate that I will never be that person again. That DQ will never know her mom the way that I was and TRex will never remember days without overshadowing worries. And as much as I love my new found appreciation for life, I also miss the person who was innocent enough to take life for granted.


  1. I read your post last evening and have been thinking about how to respond ever since. Well, after my first cup of coffee this morning, I still don't know exactly what to say. Life would be better with a healthy DQ. No doubt about that. Seeing a precious child suffer takes it's toll on everyone. I won't pretend to know how each of you are affected. I'll just comment on what I see. I see a lovely and talented young woman who has the warmest of smiles. She's juggling the demands of young children (one with serious health issues) and a full-time career. She needs to find a little time to take care of herself (but from where?). It will come. The children will get older. Their demands will lessen. In the meantime, it would be nice to find a teen (from the neighborhood perhaps) to just be with the children while you soak in the tub with a good book or exercise in the basement or make dinner, light some candles and dine alone with the Mad Scientist. You'd be right at hand in case of an emergency. I don't mean to suggest that this would change the world for you. It might make it just a bit easier.

    I also see two beautiful children who are treasured and know it.

    Enjoy what you can. Change what you can. Put one foot in front of the other and carry on. I wish you well with each step.


  2. {{{HUG}}} I honestly am not sure how to respond to this. I can relate in so many ways to the things you are saying. I definitely let myself go for far too long after Logan's diagnosis. Made poor choices in eating habits, I definitely have more days with gray hair showing than perfectly colored hair and I have plenty of puffy morning eyes from the lack of sleep due to stress at times. It is hard and I definitely steer clear of thinking how different our life was prior to Logan. I feel like there have been far too many wonderful things that have come into my life that far outweigh the bad. I hope that that scale is always balanced just that way...the good outweighing the bad.

    I have been really striving hard lately to find balance in my life. Trying to make better choices in eating and making myself climb a treadmill nearly every day to alleviate all of the stress I carry around. Surprisingly the exercise has been such a mood boost for me. It helps.

    It's hard not focusing on the negative impact CHD has on our lives because it steals such a huge chunk of it from underneath us. Somehow we have to muster the strength each and every day to not let it rob us of anymore happiness because there is still so much there each day if we stop to enjoy it. {{{HUG}}}

    Thinking of you!!


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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