It's very early Monday morning that I'm writing this... right now it's 1:32am California/Pacific time.
I don't usually write posts this late, but I have things on my mind that I thought I'd share that I haven't before.
As most all of you know, I'm a 23yr old CHDer (Congenital Heart Defect/Disease) survivor with Tricuspid Atresia, Hypoplastic Right Ventricle (aka HRHS) and over 21yrs Post Fontan (2nd open heart) along with a few others things.
Anyways, I've been part of the online CHD community for over 4 years now... it certainly has been a truly amazing experience and blessing, but on the other hand it has also been a very scary and hard community to be a part of. I've read and heard of many many CHDers, young and old, passing away...some I even had the honor of getting to know or getting to know their parents... the first time it happened I was totally beside myself and cried so very hard... fast forward to now, years later and passings just numb me a bit. My mended heart still aches with every passing.... each one earns angel hero status in my book. I know that each one of these angel CHDers would want me to keep living, to keep fighting, to keep spreading awareness, and to just get the most out of life in general as that is why my parents, why CHD parents fight for their child! So, I try to keep going and not grieve so much... but trust me each one of them bothers me very much... each passing gives me survivors guilt and scares the living h*ll out of me!
I know we CHDers, young and old, are here for a reason... we have a plan just like everyone in this world, CHD or no CHD. Trusting and having faith is what keeps me going. Each Adult CHDer copes differently and has different opinions, but most do agree we are here for a reason and given our special heart for a reason way way beyond our understanding... some find peace, others struggle, then some like me are in the middle of peace and struggle.
With each passing, as much as I keep living and going it's hard... for the most part I can get back up, be positive and hold on to faith... others it hits me. A passing that hits me is hard to explain, I don't always cry... it's can be like a bad night in general for me without sad news of a passing which includes a sleepless night... thoughts of life run through my head... I keep listening to my heart beat... is it too fast? too slow? doing weird beats? I think I felt something? No I'm fine. I get my stressed muscle spausms down my back and chest, I shake... I'm super scared to go to sleep, too dark, everything is unknown... what happens next?... then the thoughts that I hate... I want to be able to get married to Chris, I want to be a mother, I want to have a career, I have to publish my own book... will I get to? Please God let me! Will this nightmare end!? Then thoughts of my future surgery(s)... I don't want one... I don't want to go through anything... what will happen... I don't want to do this anymore I want a WHOLE **** HEART! Why me? WHY WHY WHY!! Sometimes on a really bad night I cry.... I feel like screaming... I walk around clutching my chest... I tremble... I want to breaks things. I had some nights were I just cry, just sit and cry. Other times I get so worked up I got into an anxiety attack and hard to breath, so I try to calm down. Then I eventually fall asleep from exhaustion... though sometimes I wake up on and off because of bad dreams, dreams I don't even want to share, very scary ones for me... This is what different bad nights can be for me... a little glance into a breakdowns of a CHDer.
BUT I wake up the next morning and it's new day... I usually put it behind me and thank God for everything I have. I'm blessed, I'm grateful, and I can be strong enough to keep going. After every breakdown I pull myself back up and say to myself "My parents, surgeons, etc did not work so **** hard for me to waste my life being in a bubble all depressed... I need to get moving and embrace everything... I get ONE chance at this just like every person, ONE!" I know my special heart was not a mistake and I do really love my special heart... I may have a "Half a Heart" but I do NOT have "Half a Life"!!! But I have really bad dark days... ones that have been hard to be put into words.
Chris, my parents, and others tell me all the time I need to live, to put my health and heart first, to learn some good coping methods. With each CHD passing a CHD parent face their child's morality, but with each CHD passing I face my own. Chris, my parents, etc don't like seeing me deal with this over and over and over again... what kind of life would I have then? So I take breaks from the CHD community, I take steps back... I regroup, rethink, and relax. I love all of you, but sometimes it's necessary for my health and my heart. When a person is stressed and/or depressed their heart rate changes and sometimes your heart beat, their heart and body works harder... this is not good for a CHDer. Positive thoughts and support helps... so does talking and I know Chris and my friends are good for that. I do love my life... I embrace it and live to the fullest... but there is a dark dark side to having a CHD/Chronic illness.
So, with each CHD passing I want you CHD parents to know: With Adult CHD survivors like me... please be gentle in talking with us... please understand we are going through totally different feelings and emotions then you as parents (and no CHD parent unless they have a CHD themselves can tell me our feelings are the same, they aren't...facing your child's mortality to your own brings different feelings... things CAN be similar though... respect for each others opinions, feelings, and perspectives along with support is what we need to do)... what we need is to be offered support... ask us if we want to talk about it and if we don't then give us space.
Alright that is all I have left to say or write before my eyes go blurry from being so tired. It's now 2:08am my time and I need to try to sleep... I will probably fall asleep from exhaustion tonight as tonight we lost a CHDer which led me to write this post.
Thank you for reading! Have HOPE... and LOTS of it.... HOPE HOPE HOPE... HOPE for CHDs!!!
Sending hugs, blessings, and prayers to my CHD community/family... you all are super amazing and super special to me!
With Lots of Hope, Love, and Faith,
♥
