The first question is: 'How is Jacob doing?' It seems like a simple question, yet most days it's quite complicated. We heard him labelled as 'stable but unpredictable.' That sure sums it up quite nicely. His lungs have been decent for the past week and a half (until this morning), but his brain continues to send wrong messages. His right side can be cold, while his left side is toasty warm - odd. He can spike fevers; we undress him, and his fever disappears. It's all stems back to the signalling of the brain. We are experiencing more of these abnormalities.
Another question is: 'How are you doing?' Honestly, many days I don't know. It's like walking through fog, with not much sense of direction. Some days are so grim, yet others are a pure joy. The days of grim and darkness are often when I'm focused on the immediate surroundings, and not looking Up for strength, wisdom and contentment. It seems like it's a constant battle. Yes, I can always say 'God has things in his control', yet to truthfully feel that and be content with that is another! Daily grace is essential.
'How are the other kids?' is another staple question. Over all, kids are resilient. It's a great blessing! During Jacob's last serious bought the kids all handled the situation so different. Breanne thought she was watching her brother die. Considering she is the one who holds in her emotions, it was tough to see her so upset. Sheryl thought Jacob was sick and we'd probably bring him to the hospital, but truly didn't see the seriousness of the situation. Caleb comes with the typical four-year-old mentality! It was beautiful. He kept talking about the hospital.
About a week after the situation, Sheryl realized the depth of the matter, and it hit her - and hard!! Of all things, at school. I'm so thankful for caring staff that took her (and Breanne) under their wing and stepped them through their thoughts and concerns. Since then, there have been several conversations about Jacob. Some make us laugh, while others bring sheer pain. One of the funniest things I heard was Breanne saying one big advantage of having Jacob was that she gets out of doing regular chores when she takes care of Jacob. Even though she wants to get out of chores :) she's a huge help.
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| The kids exploring in the woods. They thought the outhouse was pretty neat. It's beautiful to see them still be able to put their stress life behind them and truly enjoy themselves!! |
Another question which some ask is 'what is the prognosis?' That leads to a bleak answer, yet one we have to face daily. The chance of recovery is 0%. Considering the condition is regressive, he'll never get better. It's all a matter of how long will he plateau, and if he regresses more, will he plateau again. It's a life of uncertainty!
Paul and I feel Jacob was brought into our lives for a reason, so when people ask questions, we generally don't mind. We will provide answers to the best of our ability. The fact is there are days we just don't know how to answer the questions.
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