Ideals

Over the past 8 nights I have slept about 3 hours 4 of them. This is due to various reasons but the main one is Kyle has difficulty spleeping and needs to be turned over, and needs various things every 1-2hours. I have a hard time going back to sleep once I wake up so I toss and turn, lay there just thinking for hours on end.

So last night as I layed in bed thinking, I was drawn to the idea of ideals. Ideals we have as children, how those morph as we are in our twentys, more so in 30s, and I am sure realization and possibly sadness as we hit our 50s and beyond.

I have a hard time coming up with 5 year and 10 year goals right now. Ideals help shape what our present and future look like. Ideals for what is the best case scenerio for my and my families lives.

What does an ideal situation look like when you are living with a child who is facing death in the next 5 or so years? What does an ideal situation look like when you see deterieration before your eyes on a weekly basis?

I don't have any idea. I don't have any idea how exactly you deal with this in the midst of trying to live a "normal" life. As I think of just the sleep aspect, if I had to work a normal hourly job there is very little hope that I would be able to function on a long term basis. How does this affect our other kids? As I hear about parents having their children in sports, music etc how is not doing these kind of things going to affect Ayden and Ellyse long term?

Im not sure how one eye looks to the present and one eye looks to the future. What does the future look like? If survival is a word to describe the hear and now what does it look like when it is over? If most of my lifes energy was spent as a caretaker, then when that is done what does it look like? For all the sacrifice given to the present what is the toll it will take on the future?

Ideals, I am not sure if they are helpful or hurtful. The wonder of what if, the thought of doing something outside of ones ability. The desire for making a difference or even doing somewhat significant vanishes. Should it? Maybe we all go through the stage of ideal vs reality. Reality winning and settling for what is.

I am not sure I have the energy anymore for pursuing ideals. It is sobering, and somewhat sureal to think I was put on this earth to be a joint caregiver for my handicapped dying son. I am not sure how to do that well. I am not sure how to continue to turn down other opportunities, I am not sure how to be an emotional, and physical support. I am not sure how not to get frustrated when I have plans for a day that change because of sickness or other need. I am not sure how to use my best energy to help Kyle and use less than my best in other places.

All of these are sobering realities, and I am not sure how ideals should play into this.