Tuesday, February 14, 2017

Day 14 - Tristan, Bryce, Scarlett & Rini Olson

Crossing: to move or pass from one character, condition, or allegiance to another.

As I sat down to begin this post, my fifth for 28 Days of Hearts, and reflected on all that has occurred within our family, I was struck by a feeling of otherworldliness.  Years ago, this life seemed daunting. Now, it is the fiber of my being. 

2013 l 2014 l 2015 l 2016
I am struck by how very different I feel about living the CHD life now than when we took our first tentative steps towards it back in 2010. Our point of view is so different, as are our definitions of complex, of sick, of dying.  Way back when, adopting a child with heart disease was so uncertain and dramatic.  A heavy weight seemed to bear down on us, one that was created by the idea of our children having uncertain futures, by the stunned and heartbroken reactions towards our children by those around us, by the recited declarations by many medical professionals of what difficult lives complex CHD children may lead and their often oversimplified proclamations of life expectancy based solely upon anatomy.

I don’t buy into any of that anymore.  There’s no crystal ball. There’s no map. Each child is unique as is their heart disease and its path. With each passing day this life with CHD doesn’t feel anything other than a typical, normal life. Except, we have been given the gift of gratitude in such a raw form.  My husband once said, “How can we have a truly bad day when it’s a day that all of our children woke up in the morning?” Amen to that.

What a gift perspective is.

It’s a typical, normal life with children who have taught us the meaning of bravery. Sure, we throw in medications, cardiology appointments, transplant clinics, blood draws, cardiac catheterizations and biopsies, surgeries here and there, visits to various specialists, and sprinkle in a few emergency room visits for good measure. But it simply is what it is now. It’s what we do for the kids we love. It doesn’t feel dramatic anymore. It certainly doesn’t feel difficult. It just feels like love. We are ruled by hope, not despair. We have not experienced tragedy. Pain? Yes. Difficulties and grief? Absolutely. But not tragedy. We have not left the hospital without our child. Too many other families have. Rini’s donor’s family has. I can never compare my pain to theirs.

There are tears, but no self-pity. We are all dealt cards in life. We all face challenges. We try to instill that sense of perspective within our children, while still respecting and validating their trauma, so that they will not see themselves as victims but as fighters, survivors and ambassadors. We hope that they will be more appreciative of the sanctity of life, that CHD in all of its unfairness and unpredictability can be used as a gift alongside of its pain. And we hope and pray for them not to view themselves as having suffered any more than anyone else, or to feel entitled because of the trials they’ve been through. Rather, we hope for their discomfort and struggles to unite them in compassion with all of the souls of this world, for everyone has a battle they are fighting in one way or another.

I learn a great deal about strength and optimism from these children of mine. How can I not when my five year old, post cardiac transplant daughter came home from a botched blood draw with tear stains on her cheeks? And in response to my look of concern, she matter-of-factly patted my arm and said, “Don’t worry, I’m fine! I cried a little, but I’m okay. I just have to go back and get it done again on Friday. It’s so that I can take good care of my heart. And, I’ll get another donut!”

That cheek. I’m sure I’ve kissed it a thousand times by now. And her earlobe! It is softer than anything I’ve ever felt. I’ve touched it over and over, remembering all of those months when she was teetering between this life and the one that lies beyond.

Rini has enjoyed a year of wonderful health. She weathered a post-tonsilloadenoidectomy bout of pneumonia well, along with influenza a few months later. So far, her immunosuppressants have protected her donor’s heart while not being too hard on her overall ability to fend off infection. We are grateful for each and every recovery. We expect that she will face a somewhat complicated aortic surgery in the future, but we will take it as it comes.  And yes, there are times when I think of how many years into the statistical “9-12 year graft survival” she is already into. I do think of once again being where we were with her three years ago. When that time comes again, will she receive another respite, or not? But that is when it is time to take a deep breath and again focus on today. After all, the gift and the miracle aren’t packaged as a guarantee of a specific lifetime. They are the life right in front of us, here and now.

Our sunshine-on-earth, Scarlett, has had a beautiful, healthy year.  She epitomizes to us how you really should not assign the word “sick” to a child because of their diagnosis. She has true single ventricle anatomy…no left ventricle or mitral valve, mixed in with double outlet right ventricle, transposition of the great arteries, pulmonary stenosis, single atrium, and total anomalous pulmonary venous return. But she runs, plays, laughs, and grows in a way that shows that her fierce spirit is more than making up for her half of a heart. The Glenn and Fontan have been her miracles. We are relishing the fact that she is doing as well as can be.  And when a physician not entrenched within the world of pediatric cardiology attempts to make a blanket statement regarding her future, I chuckle and challenge him or her to learn more about these mighty children and stop painting them all with the same brushstroke.

Our impish boy! Bryce is doing very well. Summer brought a decrease in exercise tolerance and an echocardiogram showed worsening stenosis within his donor pulmonary valve and conduit (an expected occurrence).  Up he went for a cardiac catheterization to determine his anatomical suitability for a Melody Valve and for a balloon dilation of the conduit. Relief arrived through the intervention, and he will undergo Melody deployment in another year or two. Again, we were grateful for a smooth procedure and recovery. Bryce informed us that he didn’t like having a cath., but he sure liked staying at a hotel with me and getting a new set of Legos. And a few days later, he came to us and said he’d be willing to undergo it again since the fun outweighed the owies. His matter-of-fact perspective regarding his heart disease will serve him well.

Tristan, our sweet boy who started it all.  Our boy, whose first cardiologist walked into the room and declared, “Your son has pulmonary hypertension. He will probably not live past ten years of age. Don’t lose your health insurance.” Well, he is now eight years old and is doing very well, with PH that is extremely stable. Although his right heart is slowly enlarging, there is no need for his valve surgery/replacement any time soon. 

With every kiss, with every hug, it’s not just the love for my children that I feel. I give hugs and kisses for my friends’ children who did not survive their battles with CHD. They are never, ever forgotten.

Executive Director, Little Hearts Medical


LisaE. said...

I always love to read more of your story, soak in your wisdom and thoroughly enjoy the pictures of your lovely children. Rini and Scarlett make me laugh with their antics. Many blessings to you my friend!!! You and your group have encouraged so many parents and helped bring those sweet heart warriors home. Thank you for being you!

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