Belonging After Chaos
When you have a chaotic childhood, it’s difficult to find a sense of belonging. Not only as a young kid but even now as a young woman, I feel as if not having a solid foundation of belonging while growing up has affected how I find a sense of belonging today. When I was very young, I lived with my mom, dad, and three younger brothers, John, Will, and Matthew. At the age of two, Will was diagnosed with Burkitt’s Lymphoma. After a couple years of treatment, he went into remission and my brother John was then experiencing his own health problems. After multiple misdiagnoses, the doctors discover that he has the same cancer as Will. Then, shockingly, Will’s cancer came back and was meaner than before. At this point, all the doctors were puzzled as to why two brothers got the same non-genetic cancer.
No one had answers until someone brought up a study they read about X linked Lymphoproliferative Syndrome (XLP). According to the U.S. National Library of Medicine, “XLP is an extremely rare disorder of the immune system and blood-forming cells that is found almost exclusively in males. Proliferation of immune cells often causes a life-threatening reaction called hemophagocytic lymphohistiocytosis (HL). HL causes fever, destroys blood-producing cells in the bone marrow, and damages the liver. The spleen, heart, kidneys, and other organs and tissues may also be affected. Cancers of immune system cells (lymphomas) occur in about one-third of people with XLP. Without treatment, most people with XLP survive only into childhood. Death usually results from HL.”
Now that you are caught up to speed, here is where it gets chaotic. Because 2 out of 3 brothers were tested positive for XLP, they decided to test the seemingly “healthy” one to know before it was too late. Matthew, the youngest, indeed tested positive as well. At the same time, my parents were going through a nasty divorce. After Matthew’s confirmed diagnoses, my family was sent to the Cincinnati, Ohio Children’s Medical Center where there were doctors who knew about this rare immune deficiency disorder. What was supposed to be a two-day consultation, turned into living there for 2 years. Although, not me. The move happened in the middle of my second-grade year so my mom thought it would be best for me to stay behind with family friends until the school year was over. Being away from my whole family for months at a time, especially at that age, was difficult for me. I did have friends and local relatives I saw often but knowing that my little brothers were fighting for their lives while I was living it up riding horses, was troubling.
Suddenly, I was their shot at survival. They needed to rebuild their immune systems and to do that, they needed a blood transfusion. Because I was their sister, I was a possible match, but the chances were slim. My blood test results showed I was a perfect match for both John and Matthew. That is crazy! Will ended up getting a perfect unrelated donor from Texas and by spring break of second grade, my brothers would be getting the blood transfusions they needed for a shot at fighting this. I was beyond nervous because, well, I was 7 years old, but I was also eager to help my brothers in any way I could. The surgery went smoothly and so were the boys’ transfusions until Matthew’s blood cells began rejecting mine. Exactly one year later, spring break of my third-grade year, I donated again by an 8-hour surgery for attempt #2 in rebuilding Matthew’s immune system. This time, success!
After years of struggling, fighting, and nearly dying, all three of my brothers recovered; which the doctors could not believe. They basically defeated science…kidding, but there were multiple articles written about their health and my blood donation; even Fox News did a bit on what my brothers went through. Anyways, years after remission, my parents’ divorce was finalized. Although, it wasn’t like any divorce. As a young adult now, I know a lot about what caused it, but I’m not quite sure exactly what happened (nor will I get into that mess) due to only knowing one side of the story. What I do know is, we have only been able to visit my dad through court-ordered supervised visits, which is not what the average divorced family has to go through.
Growing up, it significantly strained my relationship with my mom and dad. I believe experiencing these kinds of traumatic experiences shaped who I am today. Not necessarily in a good way, but not in a bad way either. I tend to be wary of forming intimate relationships with people which can make it difficult to find a sense of belonging but it’s something I‘m constantly working on and growing from everyday.
