The Things I’ve Realized

DonorDayFebruary is The National Heart Association’s Heart Month. February 7th-14th was Congenital Heart Defect Awareness Week. February 14th (besides being Valentine’s Day) was National Donor Day. I decided this year not to write Facebook or blog posts listing all the horrible things that come with heart disease, heart failure, or congenital heart defects. The numbers are disheartening and the statistics aren’t pretty. Anyone who’s read this blog the last three years knows and understands to some degree what those are. (If you are new here, and want to know more, please visit any or all of my posts of Februaries past. 2013 / 2014 / 2015 ┬áThere’s a lot of heart-string tugging in the reading.) So although I didn’t spend any time writing about it last week, I did do a lot of thinking. I wanted to share instead just a couple of the incredible blessings from our journey that I’ve come to realize this week.

  • Practical knowledge – Before our heart baby, I didn’t know how a heart even functioned, let alone its intricate anatomy and how miraculously it works. I didn’t know how to help a skinny kid on a fat-free diet gain weight. I had to figure out how to avoid tripping over 100+ feet of oxygen tubing stuck to my toddler’s face and threaded through my house. I didn’t know the difference between a peripheral IV, a central line, and a PICC Line, or what TPN, Lipids, IVIG, or Thymoglobulin was. I didn’t know that heart failure causes collateral damage to other organs, or that intestinal disease and liver damage could heal with a healthy heart. I learned how to measure medicine and give shots, track vital signs, and watch for adema and cyanosis. I didn’t know that my daughter could be so strong and brave. (And I didn’t know I could be, either.) I didn’t know how incredible the love of family and friends could feel. I didn’t know very well how to reach out and serve people that are struggling until I learned what others did that helped me. I didn’t know that someone would be willing to make a very difficult choice in the midst of a tragedy that would completely change my daughter’s life and give her a second chance. I didn’t know how close my Savior was, or how completely His love and grace could comfort and heal me and the people I love. There were a lot of things I didn’t know before this journey started. I didn’t know that I needed to know them. I’m so grateful I do now.
  • IMG_5831My family – They are everything to me and I love each of them with all of my heart. (How is that possible?) In the beginning, it was just the three of us. Mommy, Daddy, and Sarah. We clung to each other through the first couple of years with her diagnosis, unsure future and first four surgeries. When it was time for her next one, we were a family of four. Rachel was almost two, and loved spending time with grandmas and grandpas, aunts and uncles, and anyone who adored her. When Sarah was sick as a teenager and throughout her later stages of heart failure and transplant, we were a family of seven. It had been so long since we had to do the hospital scene, we weren’t very sure how to do it without the three of us clinging to each other in the sterile rooms of the ICU like we did in the beginning. We learned the hard way that we had to keep some sense of “normal” at home. The four children left there to worry and wonder had to have someone to cling to as well. Grandma and Grandpa were blessing for sure, but just not the same as Mom or Dad. Our “period of separation” was probably the most difficult part of the whole journey for our family, but it was so very necessary. We learned what was most important to occupy our time, and our family always rang in at #1. The house was dirtier than it used to be, we ate cold cereal for dinner a lot more, and we told a lot of people “no” when asked to help with things. I think we even skipped school a few times. Above all, we most definitely cuddled more, went out for treats more often, and made sure the words we spoke were soft and kind. We always looked for blessings and miracles–things to be thankful for, especially when things seemed hardest. We worked together, played together, and fasted and prayed together. We learned to talk through our frustrations and fears and rely on the other members of our family to help us be strong. We believe that families can be together forever, and we’re grateful that we have learned how to love unconditionally and completely. Forever would be a really long time if we didn’t love each other so much!

So, this Heart Month, instead of feeling sad for people like us who have been touched by congenital heart defects, heart disease, organ failure, or other life-altering struggles, take a few minutes to think about the things you’ve gained through your own struggles. Maybe you have also learned things that you didn’t used to know. Like us, maybe you’ve learned to look for tiny blessings to be thankful for, or how important it is to love your family a little better and squeeze them a little tighter. Most of the heart families I know wouldn’t want you to feel bad for them. Most of them are actually grateful for their struggles because of how much they’ve gained, and what they’ve become through their experiences of struggle or loss. But just in case they need it tonight, please think of them. A prayer wouldn’t hurt, either.

~Julia

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