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After hearing the news that we may just have six to eight weeks left with Hannah, Brad and I sat down together and made some decisions. One was that he would take a leave of absence from his job as her high school principal. Part of this was just practicality ... as Hannah was able to do less and less for herself, he would be needed to help with her care. She was basically the same height and weight as me and while we had been managing pretty well so far, I knew I wasn't going to be able to lift her anymore when she could no longer "help" me.
But really, he took the leave of absence in order to spend as much time with Hannah as he could. And for that same reason, we also made the decision to pull Bethany out of school. She wasn't learning a thing anyway ... She couldn't focus on school with all that was happening at home. If she missed six or eight weeks of school and had to repeat a grade, so be it. We wanted her to have every possible moment she could with her big sister.
So from that point until Hannah went to Heaven, it was the four of us together at home. While the whole situation was heartbreaking, we made some sweet memories together as a family.
The cancer ravaging her brain had made Hannah very childlike. Most of her communication at this point was limited to questions, which she would ask over and over. Her favorite question was, "What time is it?" And no matter how we answered her -- 10:00, noon, 7:00 -- she would say, "No, it's not." She didn't know what time it was, but she was sure we were wrong whatever our response was. She was probably confused because she was sleeping so much. We finally started responding to her question by asking her what time she thought it was ... and whatever she said, that's what time it was.
Her confusion about time also caused her to want to eat at all hours of the day and night. Whenever she woke up, it was time to eat ... even if it was the middle of the night. And you know what? We didn't mind. She enjoyed her food, and if she said she was hungry, we brought her whatever she wanted.
As time went by, her favorite food choices narrowed down to three things ... Special K with Red Berries, oranges, and Michelina's frozen fettuccine microwave meals. She might eat a bowl of Special K at 2:00 in the morning, and by the time I got her bowl put in the dishwasher, she would be ready for some fettuccine ... completely forgetting she had just eaten cereal. No problem. Two minutes in the microwave, and her fettuccine was ready. I wasn't going to deny her her pasta.
One area in which we had to be pretty firm with her was in regard to showering. We didn't make her shower often because it was difficult for her, but you can only go so long without showering before it becomes necessary. I would get in the shower with her and help her stand and soap up, and she tolerated it pretty well. But when we would suggest that it might be time to take a shower, she would insist that she had just had one. I don't think she was lying or being insolent ... She honestly believed she had just had one! She had such a skewed sense of time, in her mind her last shower had probably just been a few minutes ago.
I've always wondered how parents of children who have special needs do what they do each day. This experience with Hannah gave me just a tiny glimpse into their world, and I believe I now understand a bit better. If Hannah's cancer progression had stopped there, and the doctors told us that she would live a normal life span, but with these limitations, I would have embraced that lifestyle without hesitation, just to have her here with us. I would have cared for her bathroom needs, fed her, lifted her, answered her repetitive questions ... because I loved her just as much in that condition as I had loved her for the seventeen years leading up to that time.
As hard as those days were to live through, I was grateful God allowed the four of us the opportunity to experience them together. It was a "bruising of a blessing," as Joni Eareckson Tada likes to say.
Caring for our daughter and sister during those final weeks of her life was a God-given privilege and honor.