This life of mine

It’s no big secret that I love to write. It helps me to breathe a little deeper. Live this life a little easier. And I have been writing, just not so much publicly, but I’m going to try to be a little better about updating this blog. I’ve gone back and forth over the past six months on whether I was needlessly filling up inboxes, but I’ve finally decided if you guys don’t want to read it, there’s always the DELETE button or UNSUBSCRIBE.

Part of my silence over the past six months is that Colman’s really doing well. That can change in a matter of minutes. I know this all too well. So sometimes I feel the need to withdraw and soak up every single second I can with the boys and just be present in their lives. Not think about the uncertain future and not live too much in our crazy past. Just live in this very moment.

Living in the moment is not something that comes naturally to me. I’m a planner. So I totally understand that compulsion in other people, but I find myself getting annoyed with plans or when people talk too much about the future. I don’t want to think about the holidays or December. What’s wrong with August 30th?

I was having a conversation with someone the other day, who hadn’t previously known about Colman’s heart and surgical history, and she asked me, “How do you live your life like that? I would think the worry would be all-consuming.”

How do you love a child you could lose? 

I felt like that was the real question, and I wasn’t really sure how to answer because that worry never really goes away. The anxiety I live with on a daily basis is like a low hum that’s woven itself into the very fabric of my cellular makeup.

I’ve thought about that question a lot since that conversation and here’s the truth: I don’t know how I live my life like this.

How do I explain that loving a child I could lose is also one of life’s strange gifts?

I love all my boys harder, stronger and more fiercely than I ever dreamed possible. We laugh and we dream and we chill. We try not to take life too seriously. And I take nothing for granted with any of them.

It’s not easy for me to live my life in this way, but it’s the only way I know. Nothing is guaranteed. And when I see or hear of something tragic happening in our community and someone says, “Hug your kids a little tighter tonight,” I think to myself, How is any parent not doing that every night?

I understand how easy it is to lose sight of what’s most important in the here and now. We’re all caught up with work, school, breakfasts, lunches, dinners, errands, sports practices and homework. It’s a crazy schedule. And it’s easy to wish away today for the weekend or next month or the holidays.

Please don’t do that. You’re robbing yourself of the one thing you have and that’s now.

And that’s what I cling to…the now. Right now, Colman’s doing great. I hope he stays healthy for a long time. When I see his bright shining eyes and dimples, I’m thankful he feels good and that he’s enjoying his life. Twelve years ago, he was four months old and had undergone two open-heart surgeries with a third one looming. Four years ago, he went into heart failure and contracted a deadly lung disease. I never thought we’d make it this far. I never thought we’d be right here.

If I could just get him to look both ways before crossing the street, we’d be golden.



9 thoughts on “This life of mine

  1. Beautifully said, Heather, as usual. I needed this reminder today – slow down and be grateful for now. Thats my plan!

  2. What a beautiful story, every day is a blessing, all we can do is take one day at a time, enjoy each day to the fullest. You are so blessed to be their with all your children…

  3. I always look forward to these blogs. I enjoyed your book and shared it with others who enjoyed it as well. I have been following Colman’s story (and yours) since right after he was born – first through your dad and now through you. Blog away! I may not read the latest the moment it is posted, but I always read them. They make me laugh and they make me cry.

  4. Heather, I love the updates, antics and just knowing about your family. You are a talented story teller with an amazing story. Keep it coming!

  5. Thank you for sharing your life and struggles, even when you make the almost impossible look so damn easy! I love falling in love with your boys a little more each time I read your blogs. The way you love those boys is infectious and will probably be exactly enough for Coleman to outlive his beautiful, smart, sweet and funny mommy!

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