Around that time, I had been exposed to hyperbaric oxygen therapy, and how it had helped reverse brain damage in some people. I decided that I absolutely had to take my daughter for the treatments. Fundraising was done because insurance does not approve the treatments. I remember how stressful it was making so many phone calls during that time. I had to be in contact with insurance constantly. There we were, me hardly knowing how to care for her, heading down to New Orleans, Louisiana, to receive treatments every day for almost two months. The Lord blessed us by providing us with a place to stay with an amazing family. My daughter began having what I thought was blood coming from her mouth while we were down there. In the middle of the night, I had to take her to an emergency room by myself. Talk about getting out of your comfort zone. Doctors came to the conclusion that it was not blood, and that it was from her G/J-tube site. I took her to a GI doctor shortly [afterward], who informed me that I could vent her g-tube, letting all of the gases out of her belly. It had been three months since her injury and I never knew to do that. She had suffered from so much gas pain during that time, and there was such an easy fix that I was never told. It hurt my heart knowing she had been suffering. It made all the difference and was a tremendous help.
During those two months, my other daughter, who was around three at the time, had to stay at home with my family. I had to choose to miss out on two months of her life, to get my baby the treatments she needed. She changed during those two months and learned so much. As a special needs sister, she coped with the changes pretty well. My family was able to bring her to visit me once while we were there, which I appreciated very much. It was a bittersweet feeling once we were able to go back home. I was excited to go home, but at the same time was sad to leave the new family we grew close to during our stay. I was also concerned about how I was going to take care of both of my children at the same time, because up until that point, I didn’t have to often.
Once we arrived home, I was finally informed that my daughter was eligible for private duty nursing care. The entire time I had been thinking that I would never be able to work or leave my house again without her. My world changed once the nursing care was approved. It didn’t happen without a fight though. I remember feeling like things would never work out for us. Making several phone calls and filing appeals until the hours were finally approved. Having nursing care allowed me to go back to work. Between her many doctors and therapy appointments, going to work, and raising a toddler, I was often tempted to feel overwhelmed. I cried so many tears. I felt like such a failure and I felt as if things would never get better. We were still living out of a tiny room and I wanted so desperately to find a place of my own so that we could have some sense of normalcy.
A Fresh Start, and a Reversal
Months went by and I was finally able to get my own apartment. It was a scary feeling, knowing I was the only provider for our family. I also felt empowered. I was being independent and didn’t have to rely on anyone anymore. A year before, I was feeling stuck with my husband forever because I believed I was too weak and could never make it on my own. I was making it on my own though. All the fear he had drilled into my head of how I’d be nothing without him, vanished. I could make it on my own and I was. At the time I was still in the middle of a dragged out divorce. It was costing me every penny I had to my name. I was living paycheck to paycheck and sometimes asking for money just to make it to the next payday. I stayed in constant prayer. I trusted God’s plan for me and knew He would provide for our needs. However, I was beginning to grow weary, and began to complain about my situation. What happened a week after I began complaining taught me a valuable lesson.