How do we not hover over Maggie every moment of the day? How do we keep from sneaking into her room at night to make sure she's still breathing ok? How do we let her go to school, to a friends house, to her grandparents' house? How do we let her out of our sight? What keeps us from driving Maggie nuts with over-protection and smothering?

I don't know.

All of the doctors have explained to us that there is nothing we could have done to save Elena. We mostly believe them. By extension, of course, that means that there is nothing that anyone could have done. By the time anything was visibly wrong with Elena, it was too late to save her. Would we have believed this to be true if she had died somewhere else?

I don't know.

If Elena had died while at school or on a sleep over or while playing at a friends house or at soccer practice or any of the places that a healthy, normal six year old spends time, would we have believed there was nothing that could have been done?

If she had died at your house, would you have forgiven yourself? Even if you know in your heart and mind that there's nothing you could have done, you would have wondered and lived with those questions forever. If she'd died at your house, would we have ever believed that there was nothing that could have been done? Would we have always wondered what would have happened if only we'd been there? If only we'd said "no" when Elena asked if she could go to your house.

But we couldn't keep Elena locked up in a room. She wouldn't have been Elena. And it's a dangerous world with so many things to protect against. We just can't protect our babies against every real or imagined threat. And if we had kept her at home with both of her parents there in a room with her. . . if we had, we would have ended up the same place we did letting her be free. Kim and Maggie and I alone in a room with Elena unable to protect her against an unseen microscopic assailant.

And so we have Maggie. Kim and I look at this amazing child and want to protect her and know that we can't. Kim cried a week ago that Elena will never get to have her heart broken by a boy or know the disappointment of unmet expectations. There were many things left that we couldn't have protected Elena against and can't protect Maggie from.

How much do we watch over Maggie and help her avoid the pain to come? How do we help her navigate the dangers? How do we keep her from saying "what's the point, look what happened to Elena"?

I don't know.

Published in: on April 16, 2006 at 7:38 am  Comments (4)  

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  1. Hovering? You can’t. You know the deal with Keagan, of course (for everyone else: he was born with massively defective heart valves and has had three surgeries that basically plumb around the useless left side of his heart… Wikipedia for “HLHS” for more). Since the techniques for saving HLHS babies were only developed in the 80’s, there no HLHS survivors older than about 20, so there is literally no way to know what the really long-term future holds. Nor can the doctors tell us much about what is and isn’t safe beyond a few guidelines that establish some limits: don’t move to or vacation at an altitude above 5,000 feet, don’t plan on him taking varsity sports, etc. But other than that, our doctor has been very cool and said “let him do what he wants and if he has a limit, he’ll find it.” This is in stark contrast to the parents of some other kids we’ve heard of, who get weekly check-ups and in-home care and all kinds of obsessing. One nurse once told me that she sees overprotective parents putting breathing masks on their kids and not letting them do anything fun; the nurses called these kids the “cardiac cripples”, really as a knock against their parents for being too obsessive about protecting their damged-goods kids from further problems.

    What I’ve learned, and I think you know this too, is that there’s no point being afraid anymore. Terrible things have happened and will continue to, but that doesn’t mean there aren’t opportunities and pleasures for you, Kim, and Maggie to enjoy and cherish. Fear won’t help you enjoy any of that, any more than my worrying about Keagan’s damaged heart will — maybe someday he’ll need a transplant, maybe some day it will kill him, but those aren’t things I can change, so worrying about it won’t help. Instead, we’ll do what we can to raise him just like we would if both sides of his heart worked: sending him to preschool, playing PlayStation with him, and sending him to the corner when he hits Quinn.

  2. I found your website weeks ago and have been lurking ever since. I need to let you know how much your journal entries have changed my life. I have never had a tragedy such as yours, and cannot sympathize, but you have taught me, as a mother of a ten month old girl, to cherish every moment with my family, to not sweat the small stuff, to make sure I tell my husband “I love you” every day when he leaves for work, to smile and take a picture when my little one gets dirty from slinging her food around instead of sighing with exasperation at having to change her outfit yet again. Please know how much I appreciate the fact that you are making your thoughts public. I know that there have to be many, many more people out there in blogdom like myself that are greatly benefitting from reading your entries.

    You and your family are in my thoughts and prayers daily,

    Susan from North Carolina

  3. Daniel,

    I had no idea this had happened. I’m so terribly sad to read this and so very very sorry! If you need anything you just drop me a line and I’ll be there!

    Alan Graham

  4. Hovering . . . we do it too. We too with our son, had no idea … he would learn of something dangerous that would kill him. Now I often wonder what other things are in our world that will kill another one of our children. Five weeks after Matthew died, two of our sons were in a horrible accident. They made it, but it sucked the breath out of me, again. We can’t build fences around them all the time, but somehow we have to give them over and over to God, and pray and pray that they are protected. For some reason, God’s ways aren’t are ways, but Heaven WILL be forever and ever.

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