I am embarrassed to admit that I haven’t blogged lately because I have been feeling really sorry for myself. For Abby. For our new reality. I know I should be ashamed of myself. I KNOW how incredibly self-absorbed it is. I know how fortunate we are. I know that Abby received the gift of life from someone who had lost theirs. I know at least six children who are waiting for a new heart right now…some of them waiting on a second heart. Some of them have been waiting for months. Some of them are living in the hospital until a donor is found. HOW do I have any right to feel sorry for myself?
The fact is, this is a part of the recovery process. After every one of Abby’s open heart surgeries, the first 6-8 weeks of recovery are hard. She has mood swings. She is often a bit down and feels like she is missing out on the life that is going on around her. She is tired and her body is trying to regain its physical stamina. That is what we have experienced after every OTHER open heart surgery she has had. THIS open heart surgery we were going through many of the same motions of recovery…when some stark realizations hit me.
Abby has been in a semi-isolation period. This period will last for six months. She can not go to public places. She can not go to crowded places. She can not go to school. She can not go very many places at all. The physical recovery may only last six to eight weeks…but the emotional implications of this temporary isolation are hard to take. The isolation has taken a toll on all of us. Abby’s brothers are stir crazy being home so much. Abby, our social butterfly is missing her friends and family members she can not see. I am feeling restless and tied down.
Not only that, but Abby’s white blood count was low…critically low. She was at 500 and required Nupogen shots to be given at home in an attempt to encourage her bone marrow to produce more white blood cells. They need to be down to prevent rejection, but 500 is far too low. She developed a low grade fever the next day. She was dealing with headaches and chills as well. We had blood draws to test for EBV (mono) and CMV. And then we had to wait and watch. Wait for results and watch to see if she got any worse. Admitting her to the hospital would be dangerous since her white blood count was so low that catching something form the hospital was a very very high possibility. So, we wanted to keep her at home as long as possible. It was then I realized that this was Abby’s new reality. The first six months to a year are the most critical, but life for Abby will always be this way at times. Sickness will be a way of life at times and without the bodies natural defenses, it will be a balancing act. Every fever is to be taken serious. At times, hospitalizations may be necessary. It made me feel tired and sad. I hate that Abby is here. That this is Abby’s new reality.
Then this happened
Friends and neighbors from church planted Abby a garden. It didn’t have roses or tulips or petunias. It didn’t have any sweet smells or vibrant blossoms. It did have messages on every flower, reminding Abby how much everyone at church loves her. It had messages telling her how inspirational and courageous she is. It had messages telling her how beautiful inside and out she is. It was a garden perfect for Abby. It was a garden of inspiration.
And for me, it was a wake up call. It was a reminder that despite our trials, our new reality, our difficulties, we can still have a beautiful garden. My new garden is one just like this paper one. It is full of beauty and inspiration. I have my beautiful daughter, recovering from a heart transplant. She has a strong, healthy heart now beating in her chest from a beautiful and special donor. We received a letter from his mother recently. We would like to introduce him to you some day. But for now, we are keeping him to ourselves. We have not written back to his mother yet, so until we have contacted her back, we do not want to overstep our bounds. Although I can tell you he is beautiful and is now a part of my new garden, overflowing with inspiration. All these blessings make up the blossoms of a garden that may not be as beautiful as other’s gardens, but for me, I couldn’t ask for a more perfect garden.
This is part of my garden
She and her beautiful healthy heart reminded me that despite the difficulties our future may hold, we have much to be grateful for. Abby and her UNbroken heart have reaffirmed that life is beautiful and should be enjoyed…one day at a time. Welcome to my garden: I hope you find it as beautiful as I do!

Can you tell Abby that I’m soooooooooooooooooooooooooooooooooooo sorry that I haven’t visited yet. I can’t this weekend and if she wanted me to come over on a weekday I would have to be home before 3:15 and weekends are (luckily) the main days that I can see friends for a long amount of time. BUT I will try sooooooooooooooooooooooooo hard to visit soon. I love and miss you Abby!!!!!!
<3
I just want to give you a cyber hug. I have been where you are and I know there are so many of us who have felt those same feelings. We have endured life threatening events and been blessed to come through them but sometimes the current reality is just plain hard. But you work through it with the help of God and those who love you and you see hope. Isn’t hope a wonderful thing? And so is love. What love your friends displayed. I love Abby’s garden!
We are on the journey too. My son is 22, has survived 5 heart surgeries,BE with sepsis, kidney failure, cardiac arrest, an LVAD, and has been waiting for a heart for 2 years though it took until April of last year to get him listed. I have been on the mountain tops of joy and relief and in the depths of the pit of despair. And the funny thing is the emotions she the circumstances don’t always correspond. But through it all hope always gets us through and love keeps us going.
May your garden have many sunny days but remember the rain is a necessary part of it.
Hugs and prayers,
Wendy
I love you Abby! I miss you soooooooooooooooooooooooooooooooooooooooooooooooooooooo much and want to come over soon! I am soooooooooooooo sorry for not calling to plan anything! i love you so much!
I read your blog, which was posted by my friend Stephanie Friis Adams, and it made me cry because I realize how blessed we all are in so many ways every day! Our blessings are, so many times, manifested by others around us. Thank you so much for writing this, which has helped me today. I deal with depression each day – not needing a heart transplant or dealing with the challenges that brings – and you have lifted my “heart” today!
Nicole,
You need to write a book because you are blessed with an ability to help others feel what you are feeling. I have sobbed many times when I read your blog. It hurts so much to feel your trials, but it makes me so grateful for life and for the amazing people we get to experience. I love your family.
I just have to say “Thank you” right now for this post, for taking me out of the place where I was (Wallowing in self pity land) and bringing me back to the place where I try to live every day (Thankful for every day we are given land) -My son, Gavin, is 11 and we just found out last week that it is time for his 3rd open heart surgery. He was also born with TOF, and I found myself thinking about all of the road blocks he will face in life that most kids (and for us, most parents) never have to worry about… but on the other hand, all of those hurdles have made him the strong, brave & stubborn young man that he is today…
I wish Abby and your family the best of luck, she must be amazing because it takes a lot of love to grow a garden that beautiful!
Thank you!
Someone mentioned above that you should write a book.. once things settle down (when do they ever?) well when they do.. think about it. This post was so touching. What a beautiful person you are.. and Abby just takes my breath away, too.. xoxo
Your blog posts always make me tear up. You and Abby are just such sweet, beautiful people. No words to explain how much I love reading your updates!