Day by Day

Alan is doing better since his hospitalization.  His outbursts are fewer, and are less "pitched" than before his med changes.  The staff assigned to him at his group home are doing well with him.  They have to pick their battles, as we all do, and are trying to keep him to a schedule.

We took Alan to his neurology appointment this week.  Usually when someone asks Alan how he is doing, he just says "fine," but on this day he answered, "My knees are weak, and I have to lean over and hold on to things."

After examination, Alan's doctor recommended physical therapy, as Alan is perilously close to falling.  While we don't know if Alan will be able to follow a therapists directions, or will even want to cooperate, we will arrange for a consultation.

I can deal with the nuts and bolts of being an advocate and sometimes caregiver for my son, but I find it hard to maintain the focus I need when I hear his say that he is having trouble walking.  It is so easy in those moments to look down the road and see the train that is making its slow steady progress toward us, so easy to slip into tears and panic.   Easy to look down from the tightrope to the chasm below; easy to be so focused on the uncertainty that is future than the reality that is today.

His outbursts, occasional bouts of weeping, his outstretched hand steadying himself on the wall or railing; these are the moments that break my determination to see today, to live in the moment.  I wonder how long before the next crisis or the next physical breakdown, the next hospitalization.  I agonize watching this slow deterioration.  I have to work - really work - to ignore the future and allow myself to be present now.

One day at a time.  Enjoy what we have.  Live in the moment.  These phrases make me feel at once hollow and hopeful.  Hollow because it seems to minimize this awful experience.   Hopeful because living day by day makes life better and more meaningful.





Comments

  1. God bless you, dear Deborah, and your sweet family.
    jeannie stone

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  2. This puts me in mind of the hymn "Day By Day and with Each Passing Moment". Here's the first stanza and the rest is very fitting too. Blessings to you and hang in there. Praying for peace in these difficult moments and to see the fleeting but sustaining joy hidden in them.
    Day by day, and with each passing moment,
    Strength I find to meet my trials here;
    Trusting in my Father's wise bestowment,
    I've no cause for worry or for fear.
    He, whose heart is kind beyond all measure,
    Gives unto each day what He deems best,
    Lovingly its part of pain and pleasure,
    Mingling toil with peace and rest.

    Source: http://www.hymnal.net/hymn.php/h/713#ixzz1iqJNM1yo

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  3. You are right. Always only we have today. But it can be oh so hard to stay in it and try to appreciate it. We can only do what we can do. God must do the rest.

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