Sunday, April 28, 2013

Still standing

Here it is almost May.  How I am thankful that February and March have long passed.  I feel wounded by those months, by the tears, the fear and the frustration.  As I sit here trying to gather my thoughts for an update, I find myself repeating something I saw a friend post a while back.

Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.
-Wayne W. Dyer

How many times have I tried to go back to the months of fall.  The days of minor inconvenience and silly frustration.  When little squabbles and irritations seemed a bigger deal than they do today.  Plans and dreams stretched across the oceans and far off adventures to be experienced.  Today, a trip to Seattle seems like a stretch for me, where the comfort and security of home feels much safer and being brave and adventurous seems laughable.

Fears and insecurity grow when I look back in time, when I find my mind wandering backward.  There is no comfort in that.  I need to focus instead on what is now, what beauty I have in the here and now as we move forward.  Finding peace in each day as it's given, instead of what I think it "should" be or what the world would say is normal.

We find that there are still many unknowns with Thomas.  It doesn't feel like we have made much headway with the medications meant to prevent the headaches, and yet just last week we found we hadn't run out of options for medications that we can use.  He hadn't needed his usual daily rescue as he typically does.  We can only give him rescue medications 3 times a week.  On school days, we typically find he takes his meds Monday, Tuesday and Wednesday, leaving us without options to treat a headache/migraine for the remaining 4 days in the week.  That is a very scary place to be.  This happened two weeks ago when on Thursday night Thomas was in extreme agony with a headache blowing into a migraine.  We were out of options for meds, but we could not stand to see him in such pain.  Thankfully we caught the neurologists before they left for the night and we were given permission to give another dose of medication.  If it hadn't worked, we would have had to take him to the ER for stronger meds that we can't have access to.  He still isn't going to school for a full day, and we are thankful that the last several weeks have seen him able to go half days for most of the school week.  If we run out of meds by Wednesday, though, Thursday and Friday he is usually home as we try to keep his body calm enough not to have a headache.  How do you do that with a 9 year old boy?  When someone has the answer, let us know.

Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.

Short focus, thankful for today as it is......and hoping for a day when pain is no more....