Learning To Live In Today

In order to continue Lexi's care at home we had to get oxygen and a BIPAP machine. Every night we would put the BIPAP on Lexi's face, strapping it securely behind her head to help it stay in place. We would make jokes, calling her Darth Vader, trying to lighten the heavy mood. She hated the bi-pap even though it helped her. She would turn her head back and forth in an effort to dislodge the mask. I hated the bi-pap because it felt restraining. Knowing she couldn't even move her arms enough to take it off if it was bothering her made me feel like I was wronging her. It hurt to see the marks on her face every morning from where it rubbed. In a sort of silent rebellion I let Daniel be the expert on it and for the most part he was always the one that put it on her.

About a week after we came home we were unable to wake Lexi up in the morning. I thought she might be dying because she was not peeing or digesting her food. Her temperature and oxygen levels were low. Three days later she woke up and smiled at me. I burst into tears, releasing the overwhelming fear and stress of the previous days. This was the start of what we call sleep mode. Randomly Lexi will sleep all day, sometimes for days at a time. It doesn't seem to bother her. Its hardest for me when she misses holidays or birthdays. It's a little... weekend at Bernie's when we put her in her blue tumbleform chair so that she can be with us whatever we are doing. Though she's not really present while we are opening gifts or having a family movie night it looks like she is with us.

The trauma Lexi's body went through in the hospital took its toll on her. Even when she was awake she was often zoned out. There were times when her face was pale and her eyes dull and we couldn't get much of a response out of her. She never laughed anymore and we had to work a lot harder for her smiles. I constantly felt like I missed her even when she was with me. We couldn't really make sense of what was happening to her. We assumed her body was shutting down.

I came home from the hospital determined to make the most of whatever time we had left with Lexi. Both Daniel and I had regrets of not engaging her enough and wanted the rest of her life to be full of fun places and experiences. She was too fragile though and we ended up right back where we were, staying home because of her health. We decided to take her out of school indefinitely. Any outing at all was really hard on her. It was sad to think that at 7 years old her best days were possibly behind her. We didn't realize they were her best days until they were already gone. It was too late to go back and have more fun with her. We had to do our best with the limitations of today. That was a really hard but powerful lesson for me. I tend to think of happiness as this place I will get to when...God is showing me that if I can't find joy in today I will never find it.

This sounds like that time was all bad but that's not true. It was a time of grieving for me as I came to acceptance with all the changes Lexi's body was going through. She no longer had good full days but she did have good moments. One evening she was so silly and happy and I snapped the picture above.

The boys, especially Chase became a lot more interested in Lexi. He liked to "read" to her and watch movies in her room. Seeing her brothers show her love and kindness brings me a lot of joy. It's a reminder that God works good in all things.