Survivor's Guilt

The moment I was born, I was a sick baby, even though doctors couldn't figure that out until I was 9 months old. I don't know what it's like to be totally healthy. I spent the first 28 years of my life knowing I had 2 holes in my heart, and pulmonary hypertension (PH), although no one really explained that second half to my parents or myself. Then when my daily symptoms of shortness of breath, and extreme fatigue turned into an elephant sitting on my chest constantly, I was eventually introduced to the PH world. I started seeing doctors at the Cleveland Clinic in Ohio who specialized in the disease, plus a cardiologist for adults living with a congenital heart defect. I was eventually started on a PH medication, and that first shipment of medication almost 16 years ago led me to the online world of a PH community. From message boards to chat rooms, I suddenly realized that I WAS NOT ALONE!! The PH world became MY world for so long. I would read messages for hours, replying to many of them, but just learning everything I could about the disease. The chat rooms became so vital to making phriends. For over a 10 year period, I "met" people around the globe who were looking for answers like I was, and looking for people who could possibly understand what they were going through. Don't get my wrong, I love and adore my family and my close friends, but NO ONE GOT ME. No one understood that I had to take breaks just making my bed. No one understood that sweeping a floor could lead to an hour long nap. But these new phriends...well, they got it!! And I made great phriends in those chat rooms, every night, or some afternoons, coming together to discuss not always PH, but other aspects in our lives. And it was so wonderful to not feel so alone!

I have had 2 wonderful opportunities to meet many of those online phriends at 2 PHA conferences, both of which were so completely overwhelming in a good way! To be able to meet people I'd been talking to for many years in person.....well, it was beyond awesome! Don't get me wrong, I run a local PH support group and I love the people in my group! They've become my in-person phamily. But, these people I'd known for so long in the internet world that I finally got to meet...well, the tears of joy were plenty at both conferences!

And then, along the way, phriends started dying. And for a long time, it was a devastating blow to me, to lose someone I had never met to a disease we shared. It was frightening to say the least. Why did they die? What were the specifics? Sometimes we just didn't know. Sometimes we would find out and then wish we hadn't. And for several years, it just broke me to learn of a phriend passing away. After meeting many phriends at those conferences, we've lost several of them, and that has broken my heart. I am so thankful I had a chance to meet them, but I am saddened that they are gone. And there is just nothing I can do about it, just grieve in the best way I can.

Somewhere along the line, Facebook blew up and allowed so many PHers across the world to connect. I have over 900 friends, and the huge majority of them are PH patients, whether I have met them locally, or from other parts of the world, or I've never met them at all. And then there are the Facebook related groups. SO MANY GROUPS. I belong to several of them, but sometimes it's just so overwhelming to follow them on a daily basis (unless I'm moderating one of them!).

Facebook has allowed me to follow the journeys of the one group of PH patients I feel the closest with: the children living with PH. Some have had congenital heart defects like me, some have had PH for other reasons, and some have PH for no known cause. Some of these little warriors I've followed for many, many years, and I am so thankful their parents are willing to share their journey. Triumphs and heartaches.

And when a child with PH dies, it absolutely crushes my soul.

Almost 5 weeks ago, a beautiful 11 year old girl named Riley passed away from this disease, and I was absolutely inconsolable for almost  two weeks. I didn't share my feelings with too many people, but quite honestly, when she died, I had the worse survivor's guilt I've ever had. I kept questioning why she had to go. Why is it that I am still here, and she is not? Especially when there are way more treatments when I was a kid, which was nothing at all at that time. Why does her family have to go through the pain of losing her, and I am still here trying to live my best life? I just couldn't make any sense of anything for the first couple weeks, and I felt mostly sad, even though I was not showing it to anyone.

Two weeks and day after Riley died, I went to visit my Dad at his new "shop." He recently had to move all of his mechanic tools and whatever the heck else he had out of the building he used as a shop, and into a much smaller building, a commercial storage locker, and an old shipping container. I stopped after rehab that Monday to see how he stored everything. The little building looked pretty neat to me, considering he had described it as a disaster zone. Then I told him to show me the storage locker. It held a generator so he could have power in the little building. So exciting. Then I asked to see the shipping container, since why not? I was there. lol  He opened that up, and I saw that THAT was a mess. As I looked around at all his stuff, I glanced at the back wall. And then, my heart stopped. Because on the back of that wall of this shipping container that had not been used for who knows how long, and that my dad had acquired, was spray painted the name:

RILEY


Even as I am typing this, the tears are welling up. There was absolutely no rhyme or reason for Riley to be on that wall......other than the fact, and I truly believe it, because I believe God answers in ways we just sometimes don't understand, that I needed a sign to realize that Riley is OK. I stood there staring for minutes with tears in my eyes, trying not to cry in front of my Dad, knowing that his mind was more occupied on having lost his old shop. I eventually got my phone out to take a picture of that wall, to remind me of Riley, to know that she is where she is supposed to be, even if we don't want to accept that. I don't know that that sign will comfort me if/when another child with PH passes. I know I will still have that Survivor's Guilt over it for awhile before maybe my soul comes to terms with it. But as sad as I get over my adult phriends pass, it simply does not compare to the loss of a child.


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