It was just one year ago. Abby reminded me of that yesterday when we were driving to her little brother’s birthday at the park. Last year at this time, Abby was just coming home from an unexpected and life changing stay in the hospital. One year ago we were just trying to deal with Abby’s diagnosis of heart failure. We were learning the ins and outs of Abby’s Life Vest and wearable defibrillator. We were giving Abby medicines hoping that it would buy her time, hopefully years, before she would need a transplant. We had spent the previous days coming to terms with the complete shock that Abby was in heart failure. We had discussions with doctors about defibrillators, pacemakers, heart failure, and heart transplant. Only a year ago…and yet it feels like ages. It feels like that year has disappeared into a big conglomeration of hospital stays, doctor’s visits, surgery after surgery, medicines, worry, fear, pain, and joy. And time is one thing I feel I can’t lose a minute of any more.
Abby has been doing well and I haven’t posted much on here in part because life has been fairly stable. We have seen some hiccups–but nothing that couldn’t be treated with medicine changes or hospital stays. We have had a couple minor brushes with rejection, but nothing that didn’t respond well to steroids. We are STILL trying to tweak Abby’s medicine to get ALL her levels in the right range at the same time, which has proved to be difficult for Abby. But, more or less, we are here. Abby has started online school, which she isn’t thrilled about but is doing well with it. Abby’s siblings have returned to school. Our lives are busy and hectic and really not too much to post about. At least that’s what I thought. One of Abby’s friends was Skyping with her the other day and told me I needed to make more posts to update them all. I think sometimes we forget how many friends and wonderful people are genuinely concerned with Abby and how she is doing…especially since Abby gets out VERY rarely at this point. I was reminded by one of Abby’s amazing friends why I need to blog every now and then, if nothing more than to keep those friends connected and informed and involved with Abby’s life in whatever way they can right now.
This idea that nothing much has gone on worth blogging about was rolling around in my head last week when we hard about Mia McDonald. Many of you may know her better than we did. She was a baby, born into this world, like Abby, with a congenital heart defect. She received the beautiful gift of life when she was four-months-old. She did remarkably well with her transplanted heart for nearly four years. The family was celebrating Mia’s life with her Make-A-Wish trip to Disneyland in Florida to meet Minnie and Mickey Mouse. Hours after the plane touched down in Florida Mia fell ill. The family thought she may have pneumonia and took her to the hospital. There, they learned that Mia was in rejection, with her heart working at only 40%. She had a heart cath to determine the full extent of Mia’s needs and she suffered cardiac arrest during the cath. She came out of the cath on life support and it was later discovered that she had no brain activity. Mia’s family said good-bye, unexpectedly last week. They donated as many of her organs as they could. You can read more about Mia on this KSL news story or at her family’s blog or at a site set up to help ease the financial burden the McDonalds are facing. You can also watch this beautiful video Mia’s mom created for Mia’s little donor’s mother, who incidentally was able to meet and hold Mia before saying goodbye in the same few moments.
Why do I share this? It is devastatingly sad. And it affected me deeply, but not in the way you may think. I cried for Mia’s family and I can’t begin to imagine how it feels to lose a piece of your family, your soul, your heart the way Mia’s family did, or her donor, Jacob’s family, or ANY family. But it gave me pause. Because, those moments I haven’t been blogging about are not nothing to blog about or no big deal. Every moment of this life is SO valuable, for all of us, isn’t it? Each moment is measured and counted and none of us knows when those moments here on Earth will come to a close. Mia reminded me of this. I admit that as a transplant mom I have fear over HOW LONG do we have? How many years will Abby’s special heart beat? It is a matter of reality for all of us with transplanted children. They last 10-20 years for very successful transplants. Less for less successful transplants. Mia has helped me understand that better.
This thought, combined with the fact that Abby’s beautiful donor’s birthday is coming up on October 16th made the reality of the precarious and fragile nature of life more tangible. I’ve thought of him daily still. Life is a gift, in any form. Abby’s life is a gift from not only a loving Heavenly Father, but also a young man named Jack and his family’s amazing sacrifice. I can’t return to the complacency of living life as it happens. Instead, in honor of Mia and Jack and SO many others like them I will try to make more of life. I will make memories, I hope daily, with Abby, and Nathan, and Gavin, and Ethan, and Parker and Andrew and their father. I will realize the importance of not only the big days and the big accomplishments but also the little moments and the seemingly inconsequential activities. I will love them. I will make sure they know I love them. I will take time to pull over and look at the leaves changing colors. I will jump in the puddles with my kids. I will read the extra story before bedtime, I will talk when they want to talk and I will listen when they need me to listen…I will try to take time each day to value the moments I have been gifted with those in my life.
Life is a gift. Mia knows it. Jack knows it. Abby knows it. And I hope to know it.