One Day of Blissful Perfection.
I’m typing this Saturday night after the busiest two days I have had in years… Just doing normal Mom stuff; picking up kids, attending practices, having lunch with my Mom and walking two blocks to a friend’s house…
This is more than I have done in a long time. Toss that on top of a trip to NIH that in the past put me in bed for days and it is just short of a miracle. My life has changed profoundly in three days all because of a little needle I have been putting in my leg every morning… A treatment, if it works may cost $250,000 a year. No words for that… (Except pray that our insurance covers it…)
How do you say the word “improvement”, when that has not been in my vocabulary for seven years…? I don’t like to make comparisons, but it is as if I have been unable to walk and suddenly stood on my own… I have never been so happy that one of my doctors was out of town, because I can hear Harvard now… “Kathryn, please just take it easy, don’t overdo- it…” To which I lovingly want to say, “Are you kidding me!” “Seriously?!” We all have been waiting and praying for improvement. Now as I write this tonight, I’m in serious pain, and I hurt everywhere, clearly the marks of overdoing…
I’m like the contestants on Survivor during a food challenge… They know they are going to throw-up because they have been living off bugs and rice; but the chocolate cake and pizza just taste too good… That’s where I am…
I will gladly trade the pain for the ability to Live… Norah told our neighbor, “Ever since Mom went to NIH, she has been awesome!” Out of the mouth of my baby… Truth!
But it is also scary… I’m so scared, truly frightened, I have tasted something that I had forgotten was possible… I forgot what it was like to be my effervescent self… I have not had a day like today in a long time… Where I simply loved and lived my life…
So I’m scared; maybe it was a placebo effect, maybe my spirit wanted something so badly that my mind has created this illusion… Or maybe the awful side-effects will roll in tomorrow…
What if….?
The two words that wreck us every time… So as I sit in my bed, exhausted, and feeling so blessed that my Norah faded on this day before I did…. That I have had a miracle day… I will take it, even if it is just for today…
My blessed miracle… Today was perfection and I’m grateful.
I do believe in miracles… Maybe just maybe, this one is for me…
PilgrimageGal
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