"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."
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