Through all this Lexi's health was struggling but I kept telling myself it was a part of her hip surgery recovery and not her new baseline. She got Pneumonia once over the summer but was doing well right before she came home because August and September tend to be her best months. She started school and made it a week before getting pneumonia again. I only had scheduled help for her after school and weekend time so I was constantly scrambling to find a caregiver so I didn't have to drag a very sick little girl through the carpool lane at Caden's school or have her coughing and changing colors in the car as I brought Chase to preschool.
There is a lot of turnover in the caregiver industry. Apparently making 11 dollars an hour to do everything for a disabled person is not a dream job for most people. I often felt like I was having to work around my workers lives, as if they were doing me a favor instead of actually doing a job. There were a couple that were amazing but for the most part I felt that I was settling because I was desperate. We had the ladies to do overnight respite 4 nights a month but they wouldn't take her if she was sick. Up until that point we had always brought Lexi home if she was sick. This meant lots of cancelling weekend plans.
There were blessings having her home. I got a lot closer to Lexi. Because of her limitations she is a hard person to know and it only comes through time. I also became friends with one of Lexi's helpers. She was a girl around my age who was real and so sweet with Lexi. I could tell Lexi adored her and I did as well. If you didn't know it Lexi definitely shows preference for people in her life.
For the first time in Lexi's life there were many people that knew how to take care of her. This was a relief because It's scary to think about something happening to us if we are the only people that know what she needs. It also meant we had options for sitters to go on a date once in a while. We would have someone for her and someone else for the boys but we made it work. Daniel and I got to have a consistent date night.
But the hard overshadowed the good. Daniel works nights so I was getting up to nurse Parker, put Chase's blanket on and taking care of Lexi by myself 5 nights a week. Lexi has extreme sleep issues on the best of days. While sick she cries and fusses all night long. I was sleep deprived and resentful of Daniel because it felt like his life hadn't changed at all, except for having a cranky wife. He was still doing his stuff but once again my life completely revolved around Lexi and her needs were more than I could handle.
Lexi would take a few weeks to recover from one illness only to go back to school for a couple days and get sick again. One day I was driving home from picking Caden up from Kindergarten with all 4 kids. The big boys were fighting, Parker was crying and Lexi was choking and turning blue. I had already pulled over twice to suction the mucus from her throat. My heart started pounding loudly in my ears and I felt like I couldn't breathe.
It was my first experience with a panic attack.
Life was overwhelming and the pressure of Lexi's care always weighed on me. It was hard to talk to people about the weather without crying. It hurt so badly to see Lexi suffering. I had to stop everything I was involved with at church and couldn't be a help to my friends anymore. My own life was more than I could handle. I felt very alone and was afraid that this would now be Lexi's life. After 2 months she got Pneumonia again. I was unraveling but having learned from the past I went to Daniel before sin and anger took hold of my heart.
This was the gist of our conversation.
"I can't go on like this. If Lexi is with us full time I need you to cut some things out when she's sick (which is always) and be home more. No more college, extra training and working out. I also need to go to the doctor and get antidepressants for myself."
He didn't think that was the right choice for us, especially when we had another good option for Lexi. We decided together that Lexi would go back to the ladies half the week. They missed her and were excited to have her back. I was a little nervous knowing things would be different this time. We could no longer bring Lexi home every time she was ill since she was continually sick. I trusted them though and would be able to relax knowing that they wouldn't hesitate to call if they needed us.
A huge burden of guilt was lifted in making this decision. It was so clear that sharing her care for the unforeseeable future was in everyone's best interest.
Lexi went back to the ladies. Our heads were above water.
Unfortunately her health continued to sink.
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