Tuesday, January 06, 2009


Things have changed a lot in the last few weeks; for instance, we have let the babysitter/housekeeper go after a series of misdeeds that all pointed in the wrong direction and were unfortunately connected to Robert's care and well-being.  She was not in charge of Robert's care, but had been a back-up (her misdeeds involve driving the other caregivers away).  

I have been thinking, mostly, about three things:

1. how dirty my house is--this is directly connected to the various misdeeds of the housekeeper,
2. food, more specifically grocery shopping and the preparation of food,
3. Robert's physical body and the decisions I am forced to make about it, which is connected to an upcoming appointment with the physiatrist in Baltimore this Thursday.

A. My house was relatively filthy.  I am now in the process of cleaning it (with the help of Mrs. Meyer, who makes fine cleaning products, and my recent discovery of microfiber cleaning cloths), and this involves cleaning under and behind all manner of obstructions--furniture, for example.  Take the dirty fingerprints off the oil paint on all of the doors.  Rectifying the application of stone & tile cleaner to hardwood floors by mopping them repeatedly with hardwood floor cleaner.  Discovering that my mother is right: you can clean a moderately dirty window/glass with a wet microfiber cloth, followed by a few swipes with a dry microfiber cloth.  It is difficult for me to explain my enthusiasm for exactly how clean the glass is after these actions are performed.  

Transparency is a thing to be desired.  If there is a metaphor here, it is quite obvious to me.  All of this, I can fix.  

B. I've been (carefully) buying my groceries at Whole Foods for a number of reasons: the produce tastes better & is of higher quality, the produce manager at the River Road store is great, and I feel constantly & delightfully surprised when I shop there.  If I can't go on vacation due to difficulties traveling with Robert, I can at least buy food that tastes good.  

And, for example, is Safeway going to have freshly made lamb merguez sausage just hanging around--occasionally?  The first time I had merguez sausage, it was in Montreal.  Roger and I had decided to drive up over the border from my parents' summer house in Grand Isle, and we stopped to eat at a random cafe.  

I cooked the sausage whole in olive oil until it was browned, removed it from the pan, added chopped onion and cooked that just to the point of caramelization, added chopped tomatoes and garlic and cooked that down until the juice from the tomatoes started to deglaze the pan.  The tomatoes remained integrated, but softened and took on this glow of goodness that I will, doubtless, be unable to duplicate again in my life.  But that is, isn't it, what makes cooking fun?  We served the mixture over polenta.

No matter how much I care about the preparation of food, the ingredients, how they are cooked, the colors, and so on, I always feel a stab of guilt expressing that pleasure.  Robert can't take food by mouth and hasn't been able to do so for many years.  Before he crashed, he loved to eat--he'd eat anything, everything--raw tomatoes, tabouli, feta cheese.  We have pictures of him smiling, smearing tabouli all over his highchair tray and his face.  

After checking out the aftercare program at their school, I walked the kids over to a bakery with incredibly fancy cakes in the window.  We bought a few cupcakes and meringues and a "fairy dust" cake pop for Robert.  When we got home, I started setting up the enteral feeding pump, he grimaced and looked very unhappy, say, about to pitch a fit unhappy.  He glared up at the pump on the IV pole.  I remembered the cake pop in its bag, got it out, helped him suck on it, and let him smear chocolate all over his mouth.  He was ecstatic.  Sometimes chocolate upsets his stomach, but not last night.

C. The visit to the physiatrist.  We've lost a lot of ground on standing and weight bearing due to the instability of caregivers ultimately traced back to the rogue babysitter.  He already wears orthotic braces (DAFOs), has a g-tube, has had a hip operation.  I make all of these decisions, ultimately, to modify his body.  What right do I have?  Am I making the right decisions?  I am so tired of equipment, durable medical equipment and other devices I haven't even mentioned--hand/wrist splints, for example.  They are the vegetables of Robert's life--only he actually used to like vegetables!  If I don't have him use these things, it will affect his health and quality of life in ways he can't imagine (or so it seems, according to the doctors).  

I understand now my daughter's gut-level need to limit her food intake to her rather short list of approved foods: noodles, apples, Nutella, bread of certain types, Polly-O dual color mozzarella sticks, grapes, milk, a few more--plus a handful we insist upon that she'll allow on the list: orange juice, frozen broccoli.  We each have our limits.


Elizabeth said...

I love the transparency metaphor. When I hired someone, a while back, to wash all the windows, inside and out, I was AMAZED at what everything looked like. Amazed and embarrassed. The light, the light, the light!

oleyfriends said...

Dear Jeneva,

I ran across your blog and wanted to tell you about the Oley Foundation. We offer many programs for people like Robert on home IV or tube feeding - everything is FREE of charge for Robert and your whole family. We are non-profit and our mission is to help families like yours maximize your quality of life. We provide medical information and network patients and families with one another. Check us out at www.oley.org or contact me at dahlr@mail.amc.edu or (800) 776-OLEY.

Roslyn Dahl
Oley Foundation Staff Member