If it weren’t for CHD…

February is heart month and the week of Valentine’s Day (February 7th-14th) is CHD Awareness Week. Every February for the last five years, I’ve written and posted about congenital heart defects and how they affect lives. 1 out of every 100 babies born are born with some sort of heart defect. For some, they are severe and do not allow the baby to even survive birth, or live more than a few hours. For others, they are complex and complicated and related to a host of other birth defects, syndromes and problems they battle throughout their short but meaningful lives. For still others, they are life-threatening, but treated with many reconstructive surgeries to enhance and extend a child’s life. There are those who have a mild defect, one that could maybe go years without notice, or that is treatable with a specific drug, device or procedure. In the “Heart World”, the severity of the defect is irrelevant. These CHD Warriors and Angels are babies born (or lost) with beautiful, pure, “broken” hearts, and they all have amazing souls that match.

When my daughter was born with a very complex, very special heart, I didn’t know anything about those kinds of heart defects. I didn’t know anyone whose child had even one of them, and I didn’t know anybody else who had been through the journey we were just beginning. Now, almost 24 years later, we’ve been with her through 5 heart surgeries, numerous other surgical procedures, hundreds of doctor appointments, months (maybe years) of hospitalization, and ultimately a heart transplant. Things have changed so much in those years. We’ve accumulated a new “heart family”. Among those we have spent time crying with and love dearly, there are others we have never met in person. With these people, we share a common bond and recount our stories and experiences to help offer light and hope during their own journeys. Additionally, there are advances being made in technology and medicine almost daily that will create amazing outcome opportunities for the CHD warriors being born today. It’s an incredible, heart-wrenching, and faith-filled world I’m grateful to have had the opportunity to be part of.

The past couple of years, I’ve had a little different focus in my posts. At first they were full of statistics to help create awareness and a call to action, but I’ve since felt like they also bred pity and sadness. That’s not what I want people to feel. For that reason, I am much more reflective and focus more on how having a child with heart defects has affected my life. I wouldn’t be who I am today without the journey I’ve been on with my heart warrior. She has affected the world around her, and by her example of gratitude, faith, positivity and perseverance, she has also helped change the lives of many more people than just me.

If it weren’t for CHD…

  • I wouldn’t know how miraculous the human body is.
  • I wouldn’t have learned how to simplify and decide what’s most important in my life.
  • I wouldn’t have realized that it really is true that “tomorrow is a new day”.
  • I wouldn’t have learned how to trust God and accept His will and timing.
  • I wouldn’t be so grateful.
  • I wouldn’t recognize God’s tender mercies and daily miracles as easily.
  • I wouldn’t have had as much experience with God’s grace.
  • I wouldn’t know how many people love and support my family.
  • I wouldn’t have learned that my needs are important too.
  • I wouldn’t know how to help other people through their struggles.
  • I wouldn’t understand that my Savior really knows and loves me, and that he can comfort me because through His suffering in the Garden, He knows exactly how I feel.

Because of congenital heart defects, I’m learning to live my life on purpose…with a plan that’s usually not my own. And I’m learning how important it is to just love. <3

(You can read more about Sarah’s journey on her blog, Sarah’s Second Chance.)

My Apron Strings

We should have had a ceremony. One where we pulled out the scissors and my rarely-worn apron and symbolically cut the apron strings. Maybe that would have helped me learn to let go. My two oldest daughters moved out a couple of years ago. One in the fall to attend college at Utah State and the other only four months later to attend LDS Business College. All of the sudden, our family of seven was just a family of five, with room to spare at the dinner table. I was happy for them, but sad for me. I knew that once I let them go, things would never be the same…. But they went away anyway, and started living on their own, making their own decisions, and finding their own way.

When these girls were little, Steve used to tell them they couldn’t even date until they were 30. I used to fantasize about locking them in a pretty little love bubble so I could keep them safe and happy forever.  Kind of like a Neverland type of thing, where they’d never grow up, the world couldn’t hurt them, and they’d never stop needing me. Don’t get me wrong, I’m excited for the next stage of my life with my sweetheart and I sharing an empty nest and then little grandbabies to cuddle, too. But being their mommy is the one thing I’ve wanted (it seems like) my whole life. Taking care of my babies, kissing their owies, guiding them through hard things, and helping them…grow up. I want to protect them, keep them safe, make sure they’re always happy. Now that they’re grown up, it’s hard for me to let them make their own decisions, manage their own lives, and quietly go about their business without me. Sometimes it’s hard to see them doing things that could change that perfect future I’ve planned out for them. Or be happy about ideas and plans that could take them away from me. But because it’s the natural order of things (and when I’m painfully honest with myself, I know I’d rather not have them depend on me the rest of their lives), I’ve had to learn to let go… a little at a time, and sometimes, I even think I might be able to completely. …Someday.

Even my baby thinks it’s OK for him to grow up. Last summer, my then 10 year-old son came in from playing with his best friend and announced that the next day they were going to do a lemonade stand in our front yard. At a time when I wasn’t going to be home to hover and make sure everything went fine. I just about put a kibosh on the whole plan until I thought about it and realized that we’ve taught him well. He knows the rules about strangers and what is and isn’t allowed. He’s also got a pretty good head on his shoulders. And his big brothers were going to be just inside the house if he needed anything. But, still, it was hard to let him do this without me. But, four dozen cookies, two gallons of lemonade, four repeat customers, and five hours later, they had earned $72 together. Wow… and they did fine. And were safe. Without me.

My daughters are choosing their forever sweethearts, deciding the course of their learning and careers, and following their dreams. They’re learning what they believe in, who they can count on, and what they want out of life. Finding their path to happiness. Isn’t this what I taught them to do? What I want them to do? It really truly is. And, as I watch, it makes my heart happy to see that they’re doing pretty well figuring it all out.

My teenage boys are growing daily, one much taller than me, and the other seeing me at eye-level now. Sometimes I wish I could just freeze time and make all this growing up stop. But then I have a fun adult-type conversation with these talented, sensitive and bright young men and I’m in awe of them. The way their brains work. Their talents and thoughtfulness. They’re going to grow up, and be amazing men, husbands, and fathers.

These kids of mine – all five of them – are going to grow up, into loving, kind, and respectful adults, great contributors to an ever-changing world. Come to think of it, I can’t wait to see that happen. It will be like Mommy Pay-day, a hundred times over. I’m excited to see them chase their dreams and become anything they want to be. I’m excited to see how they raise their families, what family traditions and happy childhood memories most grounded them that they choose to continue. I’m excited to see how they influence other people’s lives and make a difference for good in this sometimes cold and lonely world of ours. I’m excited to see them grow. Yes. I really am.

Let’s go find a pair of scissors. It’s definitely time to cut those strings.