Day Tripping With Sarah

We are having such beautiful weather these days.  After months of cloudy skies and frozen, snow-covered ground, the sun has been shining and warm, teasing us, giving a glimpse of spring that is not yet ready to emerge.  There is so much to do outdoors; leaves and twigs all over the place, piles of construction debris that remain from the new barn, neglect from the place being vacant for a year or two.

I made a list of chores that are important to me and try to do one thing a day.  I cut the wild roses down that had grown up at the edge of the lawn that drops to the ravine.  Of course, once that barrier was removed, the dogs started going down there, getting muddy from the stream that overflowed its banks with the melting snow.  Nicky, the little Boston who was  my daughter’s dog, took off after deer scent and was gone for a while, worrying me and making the decision for us that a fence will have to be put up along the ravine.  I picked up the piles of plywood and shingles and separated the usable stuff from trash, pulling a muscle in my back in the process.  Hurray!  Now I have an excuse not to do anything physical, including going to the gym….

And in six weeks, I have to be open for business.  We have our new wall in the barn, dividing my studio from the area where the tractor and other farm equipment is stored.  The furnace is in place, and the sinks, hot water heater, and other things necessary for my dye kitchen are ready to be installed.  There are hours of work to do, organization of supplies to do, weaving and spinning and dyeing.  I’ve always been someone who liked to have everything done weeks in advance, but I feel like I might have become more of a crisis manager now.  No one will die if everything isn’t perfect on May 1st when I am supposed to be ready for customers.

On Monday, my mother called to tell me that my sister had a chemotherapy treatment scheduled for Thursday morning.  One small thing I am able to do for my family is to take Sarah to her appointments.  It gives me a chance to spend time with her, relieves my sister Liz from the continuous responsibility of having to be the driver, and saves my mother from  sitting on a hard chair for hours during the treatments.  It’s not a big deal, but it means so much to be able to be with my sister during what might be the last days of her life.

I left Wednesday afternoon, getting to my mom’s early enough to get some shopping in with my sister and niece.   The next morning, Sarah I would get up early and drive to Brighton for her treatment, as we have done for the past three years.  I take knitting with me, or a book to read if she gets tired of talking.  She is usually only there for three hours.  Afterward, we go to Olga’s, where Sarah has her favorite fast food sandwich; a Greek souvlaki.

We got to the clinic early, and good thing.  It turned out that her appointment was in Ann Arbor at the hospital.  Unbeknown to us,  FDA had changed the protocol for the administration of the drug, and she would have to be observed for eight hours after, with hourly urine tests to check for red blood cells.  Either they are trying to determine if the drug causes kidney damage, or they already know it does.  But since it is now infused as an IV push and not over a long period of time, as it once was, I”m not sure what they would do if she did have blood in her urine.  I was becoming increasingly alarmed, the more I was learning as we sat in her room, waiting for the nurse to give her the drug.  I tried not to sound as though I was challenging them as I asked questions.  No one seemed to know much about the drug.  Finally, it was decided she wouldn’t get it that day.  Sarah and I had decided early in the day that we would ‘let go and let God.’  I was feeling badly for her having to get an IV line inserted for nothing.   But we were happy not to have to spend eight hours there.  And, it was better that she wasn’t going to get a dangerous drug that would only benefit her for less than six months.  She would have her Olga’s after all.

Sarah was only about 19 years old when she first became ill with the blood disorder that is devastating her now.  That was nearly 37 years ago.  It’s not bad enough that she suffered brain damage at birth.  She will never live alone, work, marry or have children.  My mother must bathe her, brush her teeth, care for her in every way.  She often is incontinent.  She has severe arthritis, so bent over now that it is difficult for her to walk.  She must use a cane.  In constant pain, it amazes me how good-natured she is, loving and kind.  I have never heard her utter a word against another person.  When she is given the smallest token of love or affection, the response is huge.  Seeing her suffer is so painful, so heartbreaking.  Seeing the toll her care is taking on my mother is worse.  The last thing they need is advice giving, so my role will continue to be one of silence and service.  Whatever they need, hopefully they will ask for.  I have written before the acts of love my sister Liz and her husband Jim have given by their constant care of my mother and sister.  Merciful selfless giving.

We know our family is not alone in its struggle.  So many suffer with illness.  Many of my friends act as caregiver to an ill loved one or aging parent.    What has been so helpful is the validation we get from our friends; encouragement, empathy, love.  A neighbor who took her to church every single Sunday until she became too ill to go, a woman who has devoted her life to caring for special needs adults and makes a point of including Sarah in their weekly social outings.

Next week, Sarah is going to have two infusions of immune globulin.  Its effectiveness is not as long lasting as the last drug she was given, but it doesn’t have the side effects.  She’ll go two days, for five hours each time.  This is a small price to pay to save her life.  I am looking forward to taking her to her treatments.  Lots of knitting projects to do, it will be time well spent.  It is one of the few eternal things I will do in my life.

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