A review of almost two years

I was looking at the picture of me at the beginning of this blog with my two amazing sons who have Fragile X Syndrome.  It was taken a few years ago by the tulip fields in Mt. Vernon, a spectacular array of color.  Our family had gone up for the day, about an hour north of our home, to see the tulips in a variety of colors.  I noticed my hair which fell out two weeks after I started chemo in 2012.  It started growing a month after the chemo came to an end six months after the diagnosis of ovarian cancer.  Now my hair is short, curly and grey and is starting to thin.  I went almost a year cancer free but it has returned and I am in chemo again.  My energy level is low and thus my entries have been few but many wonderful memories have been made and so I want to share some pictures from the past almost two years. 
               
              (Here is Grandma and Grandpa a couple of months ago buried in our eight grandkids.)

Phones

It has certainly not been for lack of activities that I haven’t posted in over four months.  My hair continues to grow but is still short, grey and curly (unlike my pre-cancer hair which was mostly straight with some waves) and my energy level continues to inch upward.  We are on vacation now, our first in almost a year.  I love vacations with my family.  The energy-sapping challenges of travel with six young children have changed.  Our “young” children today, housed in men’s bodies, still require supervision and help but nothing like the olden days.  Most of our trips were by car to visit relatives who lived out of state but about every other year we flew.  There was not a phone in the entire airport Phil did not like.  But because it was not an important point of interest for the rest of us we did not know the location of phones and so it required a manhunt for him in the midst of trying to check in.  Clark, Mr. Black and White, knew that what Phil was doing was not okay.  It caused stressed-out parents who now snapped at anyone who even looked like they might seek their own interests over group unity.  Phil still likes phones.  To the casual observer it looks like he is carrying on a conversation with someone.  We know where to look for him today.  And with cell phone popularity there are just not many public phones.  We have discovered that Phil when left alone keeps his eye on the rest of the family (we may not be able to see him but he can see us) and shows up at the last minute to join us in boarding the plane.

 

"I'm not a deal..."

Two days ago on a beautiful spring day in Seattle it was time for car-washing.  Two dirty cars were backed out of our garage and then vacuumed and washed by our very own resident car washer (with occasional help from his brother) who has had years of practice.  Fifteen years ago I wrote in my journal “Phil washed Paul’s old car and the van (the Tuckermobile) so I said to Phil yesterday when he asked to be paid as we were arriving up here (Whistler, our vacation destination) and I passed him a dollar (and he was excited!) and said 'You are one of the best deals around.' And he said 'I’m not a deal—I’m your son.'  We got a good laugh out of that.”

THE BIG DAY

For Clark’s birthday he received a sheet of paper from his brother, Adam, who is just younger than  by 20 months and on the paper were words that said Adam would take Clark golfing.  That was 15 months ago, December 8, 2011, and Clark had still not redeemed his gift despite many requests.  Finally a few weeks ago Adam asked if Clark would like to go golfing the following Saturday.  Clark was not feeling well because of seizures but that question brought a smile and a nod.  The week preceding THE BIG DAY we talked about going golfing with his brother and “no one else gets to go” morning, noon and night.

Finally THE BIG DAY arrived.  Paul went downstairs at 7:30 a.m. Saturday morning and there on the couch in front of the window was Clark—dressed with his shoes and coat on and his golf clubs in front of him.  Adam had called Clark the day before and told him that they would be going golfing at 2:00.  Clark has no concept of time.  We do not know how long he had been sitting there.  I eventually told him to take off his coat.  He also had a sack with a water bottle for each of them plus six granola bars.  It was pretty touching.  Paul took pictures and sent them to Adam so he moved up the time to 11:00.  They returned home about 2:00 happy and talking about their adventure.  It was nice to see them, our two oldest sons, doing something special together.

The Flu Shot

I know that any trip to the doctor will be an adventure filled with new memories but I didn’t think anything unusual would happen when I took Clark and Phil to our local pharmacy a month ago to get their flu shots.  Clark went first.  He is the one who would gladly give blood at the semi-annual blood drive at our church if he could but he can’t because he has never had a seizure-free year.  Then it was Phil’s turn.  He had already been displaying high anxiety behavior--pacing, nervous laughter, jittery bouncing of his legs while he waited.  “Hold my hand?” he asked me.  Of course I would.  In went the needle, up went his arm and out came the needle.  In slow motion I watched it fly up in the air, arch and drop to the floor.  Imagine sounds of pain and fear and that would be Phil at that moment.  I actually wanted to laugh because it looked so funny and was such a surprise.  I asked the pharmacist if he had ever had that happen before.  “No!!!”  Needless to say, Phil had to be poked again.  This time he turned his head so he couldn’t watch, grabbed my hand tightly and successfully received his first flu shot.

My Hair

I am here at my desk working on my lesson for Tuesday Institute.  Running my hand through my very short hair (1 ½ inches in most places) I can feel a small chunk of food, probably left behind by one of the kids.  It made me smile.  I continue to get lots of head rubs from the family and daily comments about my hair like “Why’s your hair so soft?”  “Don’t wear your wig--your hair looks cute.”  I’ve told the family it will probably be another few months—another inch or more of hair.  I know I would be a shock to most people.  My family is used to seeing me, even months with no hair.  I have never felt sad about my hair which I lost two weeks after I began chemo.  Much of that has to do with a very complimentary family, especially Paul.

Phil can’t resist licking his fingers and trying to smooth down my hair each time he sees me.  He is constantly telling me with much enthusiasm that I need a haircut (my hair is longer than his) and that he will give it to me—for free.  What a deal!

Forgotten

We came home from a meeting (the three drivers under our roof) at 10:00 a.m. last Saturday.  We pulled into the garage and there in the doorway leading from the garage into the house were Clark and Phil, dressed and with their coats and shoes on.  They were supposed to be at the bowling alley over an hour earlier and the designated driver (a married brother who lives two miles away) had forgotten to pick them up and deliver them to the bowling alley five miles away.  I looked at my sons standing there dressed and ready and still so expectant and innocent.  They just knew their brother would come.  It tugged at my heart.  We called the negligent driver and found him very repentant when he was told what he had forgotten.  Clark and Phil don’t have a current phone number for him but may not have called anyway since they were unaware how much time had elapsed.  There will be no more conflicts this bowling season since it will be coming to an end in two weeks and won’t start up again until August.  Track and Field practice begins the middle of March.