victory lap
we went to chicago to visit children's memorial one last time yesterday- it was only a social visit, and no one even so much as raised a stethoscope to isaiah's chest, which was nice. it was good to see so many of the people that have had such profound effect on all of our lives over the past 5 and a half years, and although there were some sad moments, i think it was a successful outing. we were able to give isaiah control over his person for the first time in that place, and i think that he certainly appreciated it. in fact, i think knowing that he doesn't have to undergo any more procedures or tests is probably the primary level at which he is tapping into the whole hospice experience. he doesn't know that he's going to die- but he knows that he's not going to have any more blood draws. and he's happy about that.
we're still getting used to the uncertainty of this process, but wonder if things would be easier if we knew what day the journey will end. laying with isaiah in the early morning today and watching him breathe with considerable labor in his sleep, i wondered if today would be the day. but now, in the mid morning sun, he's playing at the table and looking rather well.
posted by joe @ 5:59 PM
5 Comments:
Whatever you do, wherever you go from day to day, will be a new day, a new experience and a new opportunity to love - we know you are making the most of each of those moments. Wherever you are on your journey, we pray that you are enriched by that love and that each "lap" will give you peace as you are embraced in spirit by all of us who are standing on the sidelines loving you. ggv
I think as people we are so bound by time that we rely on it to help us deal with both happiness and sadness, knowing that neither can last forever...I guess what I question is whether they can. I think the gift God gave us to cope with time was memory. When it is all said and done you are on the right path - making memories for you all to cherish. blessings on eah day - andi
Lying there, watching them fight to breathe, wondering what will happen and when...It's not easy. but it certainly makes you realize how valuable and precious each moment is.
Even having walked the road, knowing how hard and yet how special those moments are, I admire you and your family for continueing to live your life with love and peace.
I'm sending support to all of you from afar. --Beth
We haven't meant, though we we will through an article of cloth. My energy, though small, are contained within. I cry within my heart when I see beautiful pictures of Isaiah playing or I read your updates. All I can think of is a simple Quaker song, and I hope you don't mind me posting it. I have different personal beliefs than Quakers, but I've always believed this song to be true:
SIMPLE GIFTS
'Tis a gift to be simple,
'Tis a gift to be free,
'Tis a gift to come down where we ought to be,
And when we find ourselves in the place just right,
It will be in the valley of love and delight.
When true simplicity is gained,
to bow and to bend, we will not be ashamed
To turn, turn, will be our delight,
'Til by turning, turning, we come round right.
May every moment be blessed and impressed upon the memory of your hearts. Know that there are many who have not posted yet read and are touched by your family.
hey bro.
i've thought about this profound post for awhile. especially the part about knowing what day the journey would end.
It's so true and for some reason my gut instinct was to put Meet Joe Black on the top of my Netflix queue again (definitely one of my favorite movies of all time).
But as you alude, that's the wonder of it. We don't know what day the journey will end, so we just have to be aware that it will end, with certainty.
As Anthony Hopkins says as Bill Parrish, "No regrets. It's a good feeling isn't it?"
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