A Little Love Story

PCHA continues its Heart Dad Series with a piece by Ryan Freund. Here, Ryan shares with us how being a dad to the amazing Adair, as she battles a rare genetic disorder that includes CHD, hip dysplasia, digit issues, scoliosis, tethered cord, hypothyroidism, hypoglycemia, is both the greatest blessing and greatest burden of his life.

 

 

The burden: I was talking with some parents of special kiddos the other day, and we got on the topic of PTSD and began discussing the moment (or moments) that REALLY impacted us emotionally, physically, etc.  The event that really strained us was during our daughter’s last open heart surgery.  Adair required another arch reconstruction and the Ross-Konno procedure, which involves removing the aortic valve, harvesting the pulmonary valve and placing it in the spot of the aortic valve, and putting a conduit in the place of the pulmonary valve.  As this was Adair’s third OHS, we had developed an understanding of how long things ought to take during surgery.  That day, everything just seemed to take extra long…but after 13 hours, we got word that they were closing Adair’s chest and that we would see her in about 30-45 minutes.

 

When time started to drag on toward the 45 minute mark, we got the feeling that things just weren’t right.  That’s when the surgical nurse came out to give us the news that the closure had taken a very bad turn.  Coming off the operating table, Adair’s heart went into ventricular fibrillation, she received two minutes of chest compressions, and she had to be defibrillated.  Once they got her heart stabilized, they re-opened her chest, called in the on-call cath lab team, and needed to check her coronaries to ensure the heart itself was being fed.  After seeing our little girl off to surgery at 7am, we finally got to see her in the hallway at 10pm as she was being wheeled back to the Cardiac ICU.  There were some additional complications during our stay which further intensified our experiences – Adair had an adverse reaction to a medication that made it look like she had brain damage.

 

All told, riding the emotional rollercoaster of being very close to losing our daughter, coupled with the prospect of her potentially having brain damage, we couldn’t talk about the whole experience for about 3 months without being overcome with tears…tears that couldn’t be controlled.

 

The blessing: I hear people say all the time that they “wouldn’t change a thing about their lives, because otherwise they wouldn’t be the people they are today.”  I am here to tell you that I would absolutely take away my daughter’s genetic disorder!

 

But since that isn’t possible, I must say that the past 2 and a half years have been life-changing in so many positive ways.  First and foremost, we have the most precious little child you could ever imagine.  She is tough beyond words, she is sweet, she is funny, and she has this way of drawing you in when you meet her that really grabs at your heart.  I think many others would confirm this, but when people meet Adair, they really seem to love her – truly love her.  She has a way about her that is captivating.

 

She has taught her mother and I about the depths of faith, unconditional love, patience, and forgiveness.  She has given us a remarkable perspective on life that is a true blessing.

 

Speaking of perspective, I will share just a small glimpse into the perspective Adair has given us.  I think sometimes it’s easy for us as parents to check out every once in a while.  Being a parent is TOUGH whether your kiddo is medically complex or not, and the age in which we live offers a lot of distractions.  It’s very easy to flip on the television and hit up Facebook for long stretches.  It’s easy to lose your patience with a behavior.  It’s easy to lose focus.  Now don’t get me wrong, we all need a mental break sometimes!  I would be lying if I said that I’m 100% on all the time!  But what Adair’s life has done for us is bring into focus the preciousness and fragility of life.  We have no idea how much time we will get with Adair, but I can say with certainty that the perspective Adair has brought my wife and me causes us to remind each other that we need to cherish each day.  We need to be present each day.  We need to love fully each day.  How many people get the opportunity to understand the preciousness of life in this way?  It’s a remarkable blessing!

 

I’d like to send some additional thoughts out to the fellow heart dads out there.  For a lot of us, sharing our feelings, our emotions, our struggles, our insecurities is tough.  We’re men, and many of us want to be the strong shoulder to cry on as opposed to the sobbing mess in the corner.  Let me tell you, though, that it’s ok (and probably even necessary) that we talk about our struggles, that we share our concerns, and that we are ever-present for our kiddos.  Being a dad to a special child is a huge burden, there’s no question, but it can also be a huge blessing.

 

I pray that all of you fellow heart families find the daily blessings in your lives as you walk this very special path.  And I pray that if you are a family member or friend of a family with a special child that you love them unconditionally and are able to be a light in those burdensome times of darkness.

 

 

Ryan is a 34 year old resident of New Berlin, Wisconsin who grew up in northern Illinois.  He is in sales in the automation and power transmission industries and loves what he does for a living.  Ryan has been married for 9 years to his wife, Melissa,  who is a mechanical engineer. Melissa now stays home with their daughter Adair full-time.  Adair, is 2 and a half years old and has a newly discovered genetic disorder which explains her complex CHD (interrupted aortic arch, VSD, ASD, surgically repaired bicuspid aortic valve with sub-aortic stenosis through Ross-Konno procedure), hip dysplasia, scoliosis, tethered spinal cord, syndactyly, hypothyroidism, cognitive disability, and a few other things.

 

 

We Make A Good Team

Yesterday our families took time to honor and show our appreciation for our Dads. In our latest blog, Heart Mom, Roxanne Bejarano, shares with us what her husband, Angel, means to her and their family.

My husband is heart dad, Angel Bejarano.

I could not have gone through our experience without the support and guidance from my best friend-my husband. We really made a great team when we found out our son Miles’ heart condition. We definitely leaned on each other and developed a rhythm that nobody else understood. We didn’t get in each other’s way, and both knew we wanted to be with our son 24:7. We never left the hospital, until after his heart transplant surgery. We knew the hard part was over, but that a whole new life was about to begin.

Being in the hospital, waiting for a heart donor, questioning the doctors, and trying to rationalize why our son was in heart failure were definitely stressful times for us to overcome as husband and wife. We’ve been friends for over 20 years, and our friendship became much stronger after going through this experience.

We understood each other and he gave me the courage to know “it was not my fault” – it wasn’t anyone’s fault. The hardest thing about being a mother,  for me, was that I brought a sick child into this world, but knowing my husband will stand by me and not blame me is the one thing that helped me cope through all this.

We learned very quickly that we were in our own world. Nobody understood what we were going through; we were alone. It took our love, strength, and faith to enter into this new parenting mode, and we discovered that nothing else matters but Miles’ health.

Thank you Angel for being my angel. Love you so much!

 

Roxanne Bejarano was raised on the north side of Chicago and is a huge Cubs fan. After meeting Angel in grade school, she and her husband have been friends for more than 20 years and married for six. Roxanne is medical coder for Northwestern Memorial Hospital, and has two sons, Miles and Logan. Her days are filled with caring for her boys and staying on top of Miles’ medical needs, including medications, doctor visits, and speech therapy. When you’re a heart parent, the only people who understand what you’re going through are those that have been in the same situation; that’s why Roxanne and her husband love the heart community and PCHA.

The Immense Sky: Space to Deal, Space to Feel

Our Heart Dad Series continues for the second week of June. Here Margaret King shares how her husband Shawn’s reaction to their journey as heart parents differed from her own.  

As I sit here writing about heart dads, I realize that it’s impossible to finish this piece without my husband, Shawn. So, we are camped out on the patio of a local coffee shop on one of those rare, picture-perfect Wisconsin summer evenings that seem to go on forever, talking about our different ways of handling this journey over the 9+ years now since we heard the news of our son’s HLHS at our 20-week ultrasound.

How can two people walk the same road and yet have two very different experiences? It’s humbling to realize that our own perceptions of the same events can be wildly different, no matter how intimate the relationship. Imagine going on vacation to hike in the Rockies with your spouse, soul mate, and/or dearest friend, and realizing at the end of two weeks of backpacking, one of you had noticed every small detail about the flora and fauna you’d passed, whereas the other had focused on studying map coordinates, local lore, and the geological layers of the mountains.

Would you feel like you were speaking separate languages, and find the other person’s view of the trip incomprehensible? Or would you cherish each other’s interests and strengths, and feel your lives were richer for sharing your different scopes of knowledge with each other?

That’s how the marriage of two heart parents can be. Shawn and I had to find a balancing act, a way to play off each other’s different strengths and try to compensate for our each other’s weaknesses, to avoid the utter exhaustion of duplicating the hard work of raising a little person with a single heart ventricle. In that spirit, we thought it would be best to have a “his & hers” dialogue about our different experiences as two heart parents sharing the same child.

Shawn: You’re really good at handling all the little day-to-day stuff that drives me insane. It’s the endless tiny glitches of everyday problems that wear me down.

Margaret: Yeah, and you’re good with the really big things. I can’t handle the big upsets. I kind of tend to fall apart with those.

Shawn: My strong point isn’t networking or making connections with other heart parents.

Margaret: Whereas I’ve met a lot of people and made a lot of great friends on this journey. I couldn’t do it without them.

Shawn: You stay up to date on the current research.

Margaret: You focus a lot more on creating a sense of normality, while I can get into these funks where I dwell too much on the medical stuff. But, I don’t mind dealing with the school and handling all the teacher meetings and IEP procedures.

Shawn: No doubt!

Margaret: I feel I’ve had a lot more ups and downs and this journey, and you’ve been more of the steady one.

Shawn: The heart condition is an ever-present background hum for me, but I try to keep it in its place. But, it never goes away.

Shawn & Margaret: We both think that it’s ok to deal with the realities of raising a heart kid in different ways. Whether you’re married or a single parent, sometimes the complexities and circumstances of raising a heart child are far beyond what any one person can be reasonably expected to handle. As heart parents, we all need to recognize our own areas of strength and build on these, while relying on others to help with some of the areas where we aren’t so strong. In a heart parent relationship, it’s important to give each other the space to deal and process in our own ways, because two people may handle the same situation very differently.

Giving each other space to deal and allowing each other to work as much as possible in our different areas of strength has worked for me and Shawn. It’s allowed us, in the words of my favorite poet, Rainer Maria Rilke, to see the immense sky before and above us.

“Once the realization is accepted that even between the closest people infinite distances exist, a marvelous living side by side can grow up for them…which gives them the possibility of always seeing each other as a whole and before an immense sky.”

–Rainer Maria Rilke

 

Margaret King is the mom to the almost-9 year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday.

Ezra Unzen

Ezra was born August 13, 2014 in Minneapolis, Minnesota with Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Coarctation of the Aorta, and Ventricle Septal Defect. He underwent a successful Norwood surgery at 5 days
old. He had a heart cath at 4 months old which
led to his 80 minute cardiac arrest and caused a severe anoxic brain injury. He wasn’t
expected to live 4 months following the arrest,
let alone to his 1st birthday. He lived a joyful life
with loving family and friends until November
4th, 2016 when he suddenly died of heart failure.
Ezra had a huge smile and touched the lives of
everyone who knew him.

Ezra’s parents are grateful for the lifesaving and compassionate care he received through his life. Together, with Project Heart To Heart, Ezra’s parents have started the Ezra John Unzen Scholarship. The scholarship will be awarded to high school seniors in the Hermantown, MN district who want to pursue a career in healthcare. With the first scholarship being awarded in May 2018, Ezra’s memory lives on not only through the life he lived, but through the future doctors, nurses, and healthcare professionals coming out of the Hermantown School District.

 

Making the (Heart) World a Better Place

 

In honor of Father’s Day, for the month of June, PCHA is pleased to focus our latest blog series on Heart Dads.  What better way to start than revisiting a powerful message from Heart Dad and recurring guest writer, Chris Perez.

Let’s get one thing out of the way: the day you looked at the grainy ultrasound image as your wife’s doctor started his or her sentence with “unfortunately” or the moment you realized your newborn would be whisked away via ambulance or helicopter, fatherhood became way different. You realized that the formative years of your child’s life would possibly be spent in doctor’s offices vs. on a football field or an ICU floor vs. a basketball hardwood floor. You suddenly found yourself more tired than you’ve ever been, more broke than you’ve ever been, and more scared than you’ve ever been. Being a dad is hard work, and if you’re like me, some days you feel like maybe you’ve got a bit of a grip on this whole things, while other days you feel like the Washington Generals and life is just waiting to douse you with a bucket of water. So how do you know you’re doing things right? Last year I stumbled upon this fantastic quote by Ralph Waldo Emerson, who wrote the following about success:

To laugh often and much;

To win the respect of intelligent people and the affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived;

This is to have succeeded.

I actually have this quote cut out and taped on my bathroom mirror, and I feel like it’s super powerful, especially for a Heart Dad. You see, for us this quote seems a little weird. Laugh? You gotta be kidding me, right? I promise you guys, there are moments of laughter in there … it might take awhile, but it will come.

Maybe you’re not the smartest, but I guarantee you that Heart Dads work the hardest. And it doesn’t take a wall full of degrees to accomplish that. And sure, our kids may not be considered physically healthy, but we can make sure we raise heart warriors who are kind, empathetic, and want to make the world a better place. I think that is what Emerson was talking about there.

To know even one life has breathed easier because I have lived. That’s a big responsibility, but that’s why you share your story, that’s why you advocate for CHD research. That’s why I write my blog. Listen, there are days I don’t feel like doing it. I’d rather sit on the couch and eat a whole carrot cake, but people continue to contact me letting me know how much I’ve helped. And that is what keeps me from quitting. Dads, there are people out there waiting to hear your story … they need to hear your story.  Share it!

The journey of a heart family is full of ups and downs, cheers and tears, joys and sorrows. It would be so unfair to use traditional measures of “success” for a Heart Dad. For me, Emerson’s words are what I hope to achieve. I hope that it works for you too. Because when it’s all said and done, if I never get another raise, if I never make more money, if I never have the nicest car, it will all be OK as long as I’m a great dad who did all he could for his family and others. That’s how I want to be remembered.

So Heart Dads, when you’re giving yet another late night tube feed, or you’re trying to get comfy on that wonky recliner in your child’s ICU room, or you’re flexing off work to go to yet another doctor’s appointment, I want you to do a few things. First, take a few deep breaths. Next, think about the smiles and laughs, think about the awesome kid you’re raising, and think about what you’re doing (or can do) to make the world a better place for Heart Kids and Heart Dads. And my hope for you is that – in that moment – you’re reminded of your impact and your strength. Keep it up, Dads! And have a Happy Father’s Day this month!

HeartWalk2015


Blogger_Perez_ChrisChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.