Support, Transition and Resilience

I was asked by several parents yesterday at the Heart Talk Day at the Zoo to post my speech on my blog so that their family and kids can re-read it whenever they need to remember that they are not alone. I hadn't thought about doing it but I loved the idea, realizing that there are patients and families out there who need to read this and know that they are not alone. 

"In my 24 years of living with complex congenital heart disease, I have learned the value of support, how to be resilient and that transition isn’t as simple as learning what your defect is or what medications you’re on. I’ve been where you are and I want to offer up some lessons I’ve learned along the way, so you don’t have to learn them the hard way.

I’ve found that parents are going to be the biggest support system you will ever have and they won’t leave you. When you get too sick to go to school for long periods of time and your friends slowly stop visiting you – I’ve been there. But your parents don’t leave your side. They are more than just an advocate. They become your lifeline, a comforter and your best friend. I can say for a fact that I would not only not be alive without my parents, but I would still be struggling with my self-esteem, depression, the guilt I feel of being a burden to my family or all the fears I have about how I’ll be able to live on my own and pay my bills when my parents are no longer here. For all of you working through depression, fears, guilt, low self-esteem or any other type of internal struggle – I’ve been there and to be very honest with you, there are days where those fears, guilt and self-esteem issues come back in full force. You’re not going to feel great everyday and that’s more than okay, it’s actually normal.

The other type of support I’ve learned doesn’t go away is those wonderful people you meet at heart camp. For five days out of your life, you are no longer “the sick one” of your peer group. You don’t have to explain your scar or why you can’t keep up. Hold on to these life changing friendships because they are going to be the people who truly get it.

I’ve learned in the past few years that there are real emotional reactions to having to transfer from pediatrics to adults. Suddenly you are the one signing on that dotted line before each procedure, a daunting realization and reminder of how precious your life is. I’ve learned that although you may call in your own prescriptions and make your own appointments now, that doesn’t mean your parents are no longer involved with your care. Having an advocate in your parents shouldn’t stop just because you turn 18. These are people who know your medical history front and back and their expertise in your health should be seen as an asset to both you and your new adult physicians. When you start your transition process, know that you are not being “childish” or “immature” if you insist on having a parent there to hold your hand during blood draws, IVs and other daunting procedures. I’ve had eyes rolled at me, at adult facilities when I insist that my mom be present with me for specific tests. Nurses have tried to convince me that “That’s just not how it’s done here.” Is an acceptable excuse as to why I can’t have my much needed support system in the room with me. Don’t let them convince you. Its going to feel weird at first, standing up to an adult. I know it was for me. I was taught my whole life to respect adults and listen to directions. But this is your journey and you deserve to be treated with compassion and empathy – even if you are no longer a child anymore.

According to Webster’s dictionary, resilience is defined as: “tending to recover from or adjust easily to misfortune or change.” Throughout my life I have learned that resilience doesn’t just apply to the physical challenges that we as CHD patients over come. To me, resilience has meant making sure my quality of life is as good as possible. My family and I are not constantly waiting for the next medical crisis or living life in fear of my health. This doesn’t mean I don’t take my health seriously, because I do. I follow my low salt diet, my no caffeine diet and stay off of the beloved roller coasters I used to love to go on. But I have learned that if you spend your healthy days worrying about when your next sick day is coming up, you won’t be able to enjoy the life you have fought so hard to keep. I’ve tried my best, as has my family, to move on the moment I get out of the hospital. Resilience and quality of life go hand in hand to my family and I. A week ago this Monday I was checked into Stanford Children’s Hospital for arrhythmia and fluid retention. And while the concerns about my arrhythmias and talk of an ablation are still in my mind, I do my best to wake up every morning just glad to be back home and back to what I call a “normal” life.

Wherever you are in your medical journey, whatever you’re feeling or worried about – I’ve been there. And yes it is going to be a hard life with more ups and downs than anyone could ever imagine – I want you to take these lessons I’ve shared with you today in hopes of creating as happy of a life as you can. And I can guarantee you, from one heart patient to the other that things do get better. You start to figure things out and learn great coping mechanisms along the way to help you. One of those mechanisms is to remember, you are not alone."