Well, now that Thomas has gone through his story, he has asked me to write about what I was feeling and thinking through all of this. So here goes.
Let me try to take you back a couple of months to begin. We were in the middle of Nathan having many shunt problems. He'd been out of the hospital and back in again several times, always for shunt problems, which meant that he was always vomiting while he was home, and he always had surgery when he had to go back to the hospital. I was so fortunate as to have been able to be Nathan's primary care giver at home. I was not working outside of the home, but was able to dedicate myself full-time to taking care of our boy. This was not only what I wanted, but was probably the most practical option for us at the time since the amount of care Nathan needed would have required us to hire a nurse, or something close to that, in order for me to work and I probably would not have made enough to pay for that anyway. But since Nathan did need that degree of care, and I was devoted to that full-time, that was pretty much all I did.
So for about 8 months Nathan had been my biggest, and essentially my only focus. In many ways that is just how it should have been, and I do not regret it at all, but in many ways it was very wearing on me. I was very tired of sitting in the hospital. Being in the hospital is lonely and boring and stressful. But when Nathan was home, he was very often sick. Depending on how close Nathan was to needing another shunt revision, he would throw up as many as 7 or 8 times a day, and each time I had to clean him up, and clean up whatever he'd been lying on, and sometimes clean myself up. And each time I also worried and wondered if he was ok and if we'd be back at the hospital again by the end of the week. I was so stressed out all of the time. When Nathan was really bad I felt like I could not leave the room because I was afraid that he would throw up and choke while I was gone. Being in the hospital meant some of Nathan's care wasn't my responsibility, but it meant a lot of driving, a lot of sitting, and it meant he was too sick to be home. It was all very, very draining.
I started to feel very unstable, like I had no control over my emotions. If Nathan had a good day, I was doing well, but if he threw up a few times, or if we had to go back to the hospital, I was so sad and disappointed that I just plummeted. I was so absorbed in Nathan's life and health that his health determined if I was ok or not. I was on such an emotional roller coaster, I didn't know from one day to the next if I would be walking on clouds or sobbing in the floor. It seemed like I was always on the verge of a major breakdown. It was really hard on Thomas too. He did not know how to help me and he wanted to so much, and he never knew if he was going to come home to find me smiling or crying. I felt so bad for bringing more turmoil and anxiety into our home, but I did not know how to escape the roller coaster.
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