As you can imagine, the next stage of my life was difficult, but I can’t think it’s much worse than anyone else entering this phase of life. I met my future husband, and we got married a short time later. We both had lost a parent at a young age, but he still had his mother in his life, so we had a unique bond that we hoped would help us manage married life. By the time we decided to have kids, we had been married for five years, and had already gone through our first round of marriage counseling. I was not very willing to “compromise” my life at all, and as we all know, that doesn’t work when you share your life with another. I had a lot of growing up to do, and I was willing to give my marriage %100 effort before I walked away, and luckily we found a way to make it work.
My husband is an “over-achiever” who was very committed to his career, and I wanted to by home with my kids, so it worked for us. After he got his MBA from Harvard, we were moving to Singapore for his new role. I stayed in Colorado while I was pregnant with my second son, as I had lost two babies in between my first and second so I didn’t want to risk the flight. I moved to Deer Trail for three months and spent time with my family while my husband moved overseas. We planned on moving over as a family when my baby boy was six weeks old, but his birth was not as expected.
Rodeo weekend was a huge weekend in Deer Trail, and my husband’s mother, sister, and brother-in-law flew in for the weekend. It was supposed to be a great time, and I was going to give birth, head out to watch the rodeo, and show my inlaws my hometown, but that didn’t happen. The birth was fine, but the next day my world crashed.
The second day of his life, Trevor’s bilirubin levels skyrocketed! Bilirubin is the byproduct of red blood cells being broken down by the baby’s body in order to get rid of the excess blood needed in pregnancy. All babies go through this process, but Trevor’s was really excessive, and he spent the first week under lights in the intensive care unit. I couldn’t hold him, I couldn’t feed him, I couldn’t believe he could end up with brain damage. (If bilirubin counts go above “30” brain damage occurs, and Trevor was at “28”) After a long week, the doctors stabilized him enough to take him to find out what was going on-but the problem was they needed blood, a lot of it. Trevor had so much blood drawn from him in the ICU that he needed to produce more to test, and his poor heels looked like a pin cushion. When the doctors finally thought we could do the test we went for our appointment, at The Rocky Mountain Oncology Department. Yeah, that put life into perspective for me and my sick boy. There were so many babies, toddlers, and kids in that office, waiting for treatments to stop their cancers that I was stricken with shame. I was completely devastated with what was going on with my son, but it was ONLY a blood disorder. I felt so ashamed of myself for my attitude and my emotions, I wasn’t ready for my son to be born with any issues whatsoever! (but who was???)
We managed to get the tests done, and Trevor was diagnosed; Spherocytosis. It’s a hereditary blood disorder where his red blood cells never mature, so they stay in a rounded-shape, instead of flattening out. The spleen sees them as “dangerous” and takes them out. When he was stable enough for me to fly to Singapore with him, we left and sought out a specialists right away. I still had to give him shots of epogen to spark his bone marrow to produce blood so he didn’t run out, but we managed to keep him going. The original doctor we had would not speak to me, but only to my husband, (he was old school Chinese, and didn’t recognize me as important) so we quickly moved him to the University Hospital oncology department. We saw the doc there for years, and even had a study started on him as “Hereditary Spherocytosis” didn’t fit our situation. After a few years Trevor’s body was able to stabilize his blood production, and we slowly calmed the “panic” that had taken over our lives.
We lived in Singapore for five years, and we had a lot of amazing adventures: scuba diving on the Great Barrier Reef, Tioman Island, Koh Pei Pei; flying to Thailand, Malaysia, Hong Kong, Vietnam, Bali, and even walked on the Great Wall of China! Life in Singapore was great, and the experiences there were priceless; I was raising my young brood in the safest country in the world. I had a nanny to help with my kids, which came in handy again when I had my third boy. (I get bed rested with my pregnancies so it was perfect timing!)
I found a church in Singapore that I got totally involved in. I took parenting courses, helped with the Newcomers club, joined the Kids’ Mass ladies as the storyteller, and I trained as a parenting coach. I loved working with new moms, I felt I could be a good cheerleader for them to get through the hard parts. I joined “Focus on the Family” as a Volunteer Coordinator, and also helped newcomers settle in to Singapore. Our life in Southeast Asia was a wonderful experience, and I still pinch myself sometimes to see if it was real.
Trevor was pretty mild until he hit puberty, then his body crashed. He spent a week in the Royal Hospital in Derbyshire, England in 2013 after his blood count dropped dangerously low. His final count was “2” before they transfused him. He slowly bounced back to his “normal” and has not had any episodes since.
I never imagined myself living in another country, let alone one so far away and so foreign. I really believe that “life finds a way” and that I am on this earth for a reason. My life is mapped out already by a higher being, my God, and I am fine with that. I haven’t had the best upbringing, as some of you may have read about, but I still see life as “half-full”. My mom left this earth way too young, and I feel compelled to live the best life I can. I so wish I could “bottle up” that feeling as there are several people I know who would really benefit from some positive reinforcements. God only knows why I still love life and feel so fortunate to be living.
(There is no cure for Spherocytosis, and it’s hereditary, although no family members were ever found to carry it. In the severe form, monthly transfusions would be needed, and the spleen would most-likely be taken out. We have met one other person born with the disease, and her spleen was out and she is on antibiotics for the rest of her life.)