Getting Real

Yesterday was a very busy day, lots of people in and out all day long. Of course Alistair is a new patient and everyone needs to get to know him and make plans for care, etc. It wasn't until mid-afternoon that we finally had some time to ourselves. Of course at that point, Seth and I got very overwhelmed with everything and needed some time to process. Luckily Papa was here to sit watch while we went for a walk.

I began this post this morning. Thanks to a very understanding nurse last night, she arranged for us to be able to go home and sleep in our own bed. We slept really well, but just not long enough. I think it has made a slight difference in dealing with stuff today. I think until we get on some sort of schedule, my posts will not be as regular as I had been. We pretty much went home almost every night when we were in Minnesota. Now that we are here, he cannot be left alone at night. So we have to be here with him. He also needs a lot of help during the day, which doesn't afford us much time to do much else. Thus the inability to find time to write!

In speaking to a few people and doing some soul searching, I have decided to take a moment to unpretty the picture. I have tried to be very upbeat and paint stuff with a rose-colored hue to appear positive. But in doing so, I believe I have mislead people into thinking Alistair is better than he is. Alistair has a brain injury that affects his muscle control. He is completely dependent on us or his nurses to do everything. He tries to feed himself, but he lacks the muscle control, without help, to get the utensil to his mouth. He is on a honey thick liquid and pureed diet because his swallowing skills need to be strengthened again. He tries to communicate and sometimes can just about clearly get the words out, but most of the time his words are hard to understand because his annunciation is lacking due to muscle weakness. He cannot walk, he can bear some weight on his feet when he is being transferred. He cannot sit-up nor can he hold his head up for very long. He has to wear briefs because he cannot get himself to the toilet. He can't always communicate he has to go (but he is getting better about this and certainly doesn't enjoy it!). He is suffering from tremors which get worse when he is concentrating to do something like talk or reach. He has become very aware of himself and has begun to get very upset and cry a lot, especially when he is struggling with trying to do something. He is not happy about what has become of himself. He told us yesterday that this is all very sad.

With all that being said, here are some good things. Alistair is beginning to show emotions and feelings. He is crying and sad, but we have witnessed quite a few moments now where he has smiled and laughed...mostly at cartoons. Last week he was very flat and didn't seem to show any emotion and express emotion. His tremors have worsened, but I think this is due to him trying to use his muscles more and communicate. His memory is intact and he has been making new memories. He also can read, although he is not up to reading books or anything yet.  

We have had a few tours of the in-patient rehab facility. It will be really good for him. It will be very scheduled with lots of therapies and activities. We will need to be fairly involved in his rehab. But we will also be able to get on a schedule and know what to expect and plan around it. He will get better. He needs to regain his strength; he has been laying in bed for 19 days and has lost a majority of his strength. Once he gets stronger, he should be able to overcome the tremors as he will be able to push past it. We have a very long road ahead of us. 

My intention in sharing this information is more for those who want to come visit. If you know Alistair at all, it is very hard to see him in this condition. I can guarantee that those who have come so far, all family to this point, have been slightly shocked. So I hope that this will provide some cushion. I also think that seeing friends might be okay or it could be hard. His friend Sully visited him in Minnesota and it went okay. Sully brought his iPad and played it with Alistair or Alistair watched him play it. Conversation is not a huge part of the visit! Maybe I will ask Alistair tomorrow about having friends visit and see how he feels about it. I am not sure we are ready to open the flood gates to visitors quite yet. We are still grappling with all of this and taking it one day at a time.