My2Sons with Fragile X

A First

2012-01-22T23:08:00.000-08:00

All week the snow has been accumulating. Streets have been icy and treacherous. Paul and I are teaching a marriage class which was to begin on Wednesday evening. It was canceled. Thursday night we had a meeting which was canceled. Though the snow is beautiful there have been over 2,000 accidents just this week due to the weather. Thursday morning I had a hair appointment and because my hairdresser works out of her home and it is only a mile away I decided to walk. I was accompanied by Paul, Clark and Phil who needed the exercise. About a block from her house Clark had a small seizure so we huddled together and had prayer, hoping that he would not have a grand mal. I took one arm and Paul the other and we continued to walk when suddenly he went into a grand mal and fell gently to the ground while we were holding onto him. There were no sidewalks so we were literally in the middle of the street. It happened in front of a house where a man was standing by his car. He asked what he could do to help. We told him a rag or towel would be helpful which his wife, who was still in her pajamas, handed out to us. She also called 911 which we felt was unnecessary since we have seen and dealt with thousands of seizures but we didn’t tell her that. Paul and I tried to shield Clark from the falling snow but there was nothing we could do to keep him from getting wet from the snow on the road. Before the fire engine arrived the seizure was over and Clark was standing, disoriented and shaky. Three firemen arrived, saw that Clark was not hurt and then offered to take him (and Paul and Phil who opted out) home. I felt overwhelmed by Heavenly Father’s help which was not in the way I expected. They got in the fire engine, Phil turned around and walked home and I continued on to my hair appointment.

Let It Snow!

2012-01-18T17:40:00.000-08:00

Snow is a hot topic around here and has been since Sunday when the first snowflakes made their appearance. It is a big deal since there are many years we do not get any snow. We have to enjoy it when it comes because it won’t be around for long. Every hour we listen to the radio, check online or watch the news on TV so we know the latest. Our most popular source of information is looking out the window. It is always amazing to me that a two-minute snow update on radio or TV can be stretched into two hours and then repeated after that—the same information, the same pictures. It is beautiful unless you have to get somewhere by car and don’t have four-wheel drive. And that was us. Yesterday the five of us piled in the car to head south 25 miles to a memorial for a very good friend. It was snowing with icy road conditions. We watched with wide eyes and comments as cars slid and some stalled but we would not be deterred. The snow curtain seemed to part as we got on the freeway going south and by the time we got to downtown Seattle there was little indication that there was a snow storm going on in the area. By the time we got to Burien the sun was out and the roads were mostly clear. Amazing! This morning we awoke to more snow so in keeping with tradition four of us went out into it to play and to go for a long walk. Snowballs flew almost the entire hour we were out. When Clark wasn’t throwing a snowball he was making a snowman while I was drawing hearts in the snow with messages of love.

Confetti

2012-01-09T14:34:00.000-08:00

Phil came home from his walk a couple of weeks ago talking about confetti.

“What??? Confetti? What are you talking about?” I asked him.

“Confetti…no…hmmm…no…grafetti.”

“You mean graffiti?”

“Yes Yes!”

“What about graffiti?”

“Our mailbox.”

“There’s graffiti on our mailbox?”

“Yes!”

“That’s great.” I said with sarcasm. Phil took off and soon returned with my camera and then went back out the door.

The Newest Christmas-time Tradition

2012-01-03T22:26:00.000-08:00

As best as I can tell, the year was 2004 when the tradition began. It was Christmas Eve day when the “boys only” (one dad and four sons) in our family went shopping downtown. It wasn’t necessarily the intent at the time but that day launched a new tradition. Since then one new “boy” has been added—our son-in-law. I look forward to it almost as much as they do—to hear the stories of how things went and to see the pictures.

Pictures were not always taken but here are a few that give the flavor of this wonderful tradition.

2009

2010

2011

On the Receiving End

2011-12-27T18:54:00.000-08:00

Sometimes I feel overwhelmed by the kindness extended to Clark and Phil’s community. A few weekends ago was Seafair's Annual Special People's Holiday Cruise - a holiday tradition! They boarded private yachts at south Lake Union with hundreds of their peers for a two-hour cruise of Lake Washington and Lake Union. When we picked them up at the conclusion they had on blinking Santa hats and a bag of goodies each. Their smiles told us they had had a good time.

The following Saturday was the Washington Ferry Holiday Cruise sponsored by AFECT (Active Ferry Employee Charitable Trust). Paul, Cherlyn and I joined them for this excursion on a Washington State ferry which went half way to Bremerton and then back. We left our car in the parking lot and walked on—past employees, clowns, musical groups, Coast Guard and Marine volunteers. What a happy, festive atmosphere. Santa made his rounds passing out stuffed toys while we enjoyed being on the water and munching on snacks provided by the volunteers. When we disembarked 1 ½ hours later Clark and Phil each received a large stuffed animal donated by Toys R Us.

This Is So Clark

2011-12-14T17:08:00.000-08:00

This afternoon I went downstairs for a short nap and quiet time to work on the discussion I will be leading tonight on The Death of Ivan Ilych by Tolstoy. I had tried working at my desk but Clark sat down by me and couldn't stop talking. He had had a headache and the Excedrin he took killed the pain and kicked him into nonstop-talking mode. Some time later as I sat in the front room organizing my thoughts and writing down notes Phil came in to see what I was doing, then in came Clark and Cherlyn and finally Paul. As we talked and laughed together Paul started feeling drowsy. He stretched out on the couch and put his feet in Clark's lap. Forty-five minutes later Clark was still sitting there not wanting to disturb his sleeping father.

A Very Happy Birthday

2011-12-11T21:52:00.000-08:00

As I walked through the kitchen this evening to get to the garage (on my way to a Christmas Music Fireside) I noticed Clark’s birthday banner still hanging above the kitchen table. Thursday was Clark’s birthday. We knew he was excited because he talked about it every day for many, many days and then would ask “Are you excited for my birthday?” Birthdays are exciting around here and begin as soon as the birthday boy or girl awakens. “Happy Birthday” is spoken many times during the day. Lunch on this particular birthday was a trip downtown with Dad to eat lunch with #2 son who works there. Then at 6:00 the party began with requested hamburgers, chips and potato salad. Phil was the chef and the burgers were pronounced delicious! Then came the opening of gifts—a 100-piece puzzle, Cars 2 DVD, National Geographic DVDs, three packs of gum and a note with an invitation for a future golf outing with #2 son. Finally it was time for cake, a requested train cake. I chuckled as I read online that “Your preschooler will chuggah chuggah choo choo all the way with this choo choo train birthday cake.” My “preschooler” loved it.

A Night at the Theater

2011-12-06T22:08:00.000-08:00

We took Clark and Phil to The 5th Avenue last Friday night to see Cinderella. It was a wonderful evening despite Phil’s day-long predictability “I’m not going!”. He means it. We don’t take him too seriously, however, because we know his pattern. He has said this for years. When he finally gets dressed (no jeans, shorts or tennis shoes allowed) he settles down. The boys don’t care that “after two thousand years of being passed down orally from generation to generation, Cinderella was escorted into the world of fine literature by Charles Perrault, whose writings started a new genre, the literary fairy tale.” When we got seated Phil became so excited. when he noticed two large monitors facing the stage by the balcony showing the conductor leading the orchestra. He sat sideways (we were on the 2nd row) so he could watch the monitors and also see the stage. People in back of us would turn to see what he was looking at and silently wondered why he was so interested in that. We knew. I know few people who can clap as loud as Phil can and he had numerous opportunities to demonstrate his talent. He joined the standing ovation at the conclusion. As we drove home, we knew it was unanimous; it was a great evening. As we drove down our street about 11:00 Clark asked if we could now watch an episode of Psych. What?!!

Monday Chores

2011-11-28T17:03:00.000-08:00

“Clark, take your sheet and pillowcase off your bed so I can wash them—also your pajamas.”

“You just did wash them.”

“You are right, I did but that was last week and we wash sheets every week.”
He continues to stand by me, no movement to go to his room.

“I’m excited to visit Brett.” Clark informs me.

I count on my fingers “That’s not for another six months.” Too bad we couldn’t have kept the trip a secret. Now we will talk about it almost every day for six months. I’m glad he is excited and I am excited for the trip but I am not excited talking about it every day.

“Mom, what kind of Christmas present you want? What kind of book you like to read?” He goes to our bookcase, picks out a book and asks if I want that for Christmas.

“I already have that book.” He knows I like books so that was a thoughtful idea.

“Mom, tell Phil to turn down the TV. David (our neighbor) will hear.” In the background from downstairs we can all hear Phil whooping and hollering because the showcase is on The Price Is Right. Soon we hear loud laughter getting closer as Phil comes upstairs to tell us that “she won both showcases.”

“Whoa, that is really exciting! I wish I’d seen that.” I tell Phil. The laughter continues. The message has been delivered so he goes back downstairs. Meanwhile Clark declares that he is hungry and goes downstairs without going to his room to get his sheet and pillowcase. I’m hungry so maybe I’ll join him for a late breakfast.

Two hours later…

“Clark, take your sheet and pillowcase off your bed…”

“Mom, you have a headache?”

"Isn't he so so cute!"

2011-11-22T20:25:00.000-08:00

I read that in a mommy blog recently and had to admit that the mother was right, the mentioned and pictured baby was indeed very cute. And then I thought about my #1 baby who is about to turn 41. At times (not always I admit) I think he is so cute and I can’t believe I’m his mom and have been on this amazing journey for such an incredibly long time. For those with cute little cuddly toddlers this probably sounds pretty creepy and maybe a little weird. But he is my frozen-in-time son who is still innocent and still says sweet things to me as he gives me a hug and a kiss on the cheek. So, the next time you see someone with a noticeable disability who may seem a little disgusting in his looks, his dress, or his behavior remember there may be a mother at home who thinks he is so cute.

Clark with his nephew

Almost Time

2011-11-15T20:41:00.000-08:00

It is almost time for one of my favorite times of the day. We’ve eaten dinner, the kitchen is clean, Paul is playing racquetball and I’m working on a lesson for tomorrow morning. As soon as Paul comes in the door and showers we will all gather around the TV to watch an episode of Psych—all together laughing and commenting on what we’re watching and eating popcorn and making a mess that has to be vacuumed up when we’re finished. It is the end of the day, chores have been completed and now it is time to relax and enjoy being together. Last night we watched the last episode of Foyle’s War before the new season begins in 2012.

When we’ve watched all seasons of Psych we will find something else that will pull us together for a short time on evenings we are all home at the same time.

A Gold and a Silver

2011-11-06T21:54:00.000-08:00

Yesterday was the annual bowling tournament with Paul and me as cheerleaders. Clark and Phil were on different team, each bowling two games. Clark got the gold and Phil the silver. We celebrated after at the Golden Arches.

The Hug

2011-10-30T20:34:00.000-07:00

It started Monday morning after I had already left for my class. Paul received a call that one of our granddaughters was sick and would he pick her up from school. As he and Clark were returning home from picking her up he received another call that a good friend of ours whom we have known for over 36 years had just died and would Paul come to the house. He was within a few blocks so he turned the car around and went there to be with the daughter, a grown woman who had been living with and caring for her 90-year old father. The death was not unexpected. When they finished talking, the daughter asked if Clark who was sitting in the car with the sick one would like to come in and see her father. When Paul got to the car to ask, Clark was out of the car almost before he finished the question. Five minutes later he emerged and talked about our friend until they arrived home. A few days later the daughter, with a smile on her face, told us what had happened when Clark came into the house. First he hugged her and then proceeded to offer words of comfort and assurance and then another hug and he was gone.

Nighttime Attire

2011-10-23T18:52:00.000-07:00

Whether it is 24 degrees Fahrenheit outside or 94 degrees Clark wears sweats to bed and a short-sleeved tee shirt and socks and Phil wears black shorts and a polo shirt. I didn’t realize Clark was bundled up while we were on vacation until it was pointed out to me one morning that he had socks on (and perspiring). Consistency is important for Clark and Phil but there is also their innocent dependence on us, their parents, to help them see or understand something—like taking off your socks when you go to bed will help you feel cooler during the night when the outside temperature is over 70. I am ashamed to admit that I am still sporadically negligent in putting sunscreen lotion on them while we are on vacation and often when we are outdoors for a hike or bike ride. They would never think to put it on themselves so as a responsible parent I should but I even forget to put it on myself.

The Library

2011-10-18T13:13:00.000-07:00

A library card is a must while we are vacationing. It was two years ago I discovered that McCall Smith had not stopped at five books in The Ladies Number One Detective Agency series so serendipity took over and my reading plans for vacation changed. Books I had brought to read were set aside. Part of the routine at the library is checking out movies so we have something to watch in the evening, all together, when the activities of the day have come to an end. One evening after dinner we walked to the library, all five of us. The library is two blocks away just off the trail that runs along the ocean. We found a couple of movies to last until we returned home and then we walked back, all together, in the darkness and the warmth, feeling safe and contented. Because the readers in the family always have a book they’re reading Phil usually checks out two books.

Phil the nonreader now gets books without pictures he has found in the children’s section. He puts them on a shelf or in a drawer until it is time for them to be returned. Without being given the assignment Phil took it upon himself to be the person responsible for returning movies and books to the library, usually delivered while he was on his mandatory walk.

Up the River

2011-10-08T16:27:00.000-07:00

Here is something I wrote a while ago about another exciting excursion our family took in July.

"Yesterday was our kayak trip on the Wailea River, Clark and me in one kayak and Paul and Phil in the other. We paddled up the river about 30 minutes and then docked our kayaks on the shore,

along with a dozen other kayaks already there, before we hiked a mile to Secret Falls hidden in the rain forest. A canopy of trees sheltered and shaded us most of the way as we crossed the river holding onto a rope, waded through a stream or two and scaled a steep part of the trail by holding onto tree roots.

It was hard work at times but we were rewarded with a hidden waterfall that falls into an icy-cold pool. In a previous year we swam in it and stood for a few seconds under the falls while it pounded our heads.

Before we started our adventure Phil had separated himself and was sitting on the dock alone. He was solemn and quiet but as soon as we joined him on the dock there were loud outbursts, laughter and slightly out-of-control behavior. “Phil, are you nervous about going in the kayak?” Without hesitation “Yesssss.” Clark’s anxiety showed on his face. We got into our life jackets, slid into the kayaks and were off, Phil laughing and Clark complaining. Clark and I have been partners before. I know the routine. We try to stay in the middle of the river but are soon visiting the vegetation overhanging the river. Clark’s grumbling begins as he tries to get us out of the branches and I start laughing. As soon as we’re out of the vegetation we try again. I’m feeling encouraged when we actually make it 50 yards before we’re back in the vegetation on the other side of river, then a repeat of the grumbling, the laughter. Eventually we make it to our destination, dock our kayaks and begin the trek. Two miles later, two falls on the trail and one fall in the river (Phil yanking on the rope in an attempt to knock Clark off his feet caused him to fall backwards) and many mosquito bites we were ready to tackle the river on our return trip. Clark’s anxiety was at a high. He was threatening to report my laugher to Bishop Biehl. I must admit my patience almost ran out but then the village appeared and we made it back to dry land without landing in the river. It was hard work at times and I was amazed at times at how well Clark and Phil did overall. We’ll do it again someday."

Hard to imagine this happy face looking anxious.

Another Birthday Celebration

2011-10-01T19:31:00.000-07:00

A combination of having our #3 son and his family here from Australia for almost two weeks and Paul and me out of town for a few days my writing has been sparse. Before #3 son returned to Australia we celebrated Phil’s 35th birthday two days early. Initially when I told him what I had planned he informed me that the 26th was not his birthday. Then when he realized it was his party and he got to choose the food (tacos) and cake (a heart cake with his name written in M&M peanuts) he got into it. Everyone was there except our youngest and her family of four and #2’s wife who is working on an MBA. We don’t know how to have a quiet party and this one was no exception.

Let the wrestling begin!

Here is Phil's thank you to an aunt and uncle who sent him some money ready to mail. He dictates his message to me. I type it on the computer and then print it. He then copies it onto the card so the thoughts are his and it is written in his own hand.

The Reassurance

2011-09-19T22:38:00.001-07:00

We were on vacation. It was Sunday and we were in church where we felt the familiarity and were glad to be united with others in a peaceful atmosphere. I looked at my family and noticed Clark was wild-eyed, like he was on medication overdose. The frequency of these episodes has increased in the past year, coming a few times a month. I know what an overdose looks like. When Clark was a young teenager he was on Dilantin, one of his anti-seizure medicines. I couldn’t understand why he was falling over on his bicycle and acting tipsy and why his eyes were wild looking. We visited the doctor and were told this medicine can pool in his system so when we cut back on the amount he was taking he improved. But he has been off Dilantin for years.

We were in a Sunday School class in the chapel so I took Clark to the back pews so he could lay down if he needed to. I sat by him, putting my hand on his arm or back and watching to see what type of help he needed. Often his speech is slurred when he goes through this and in general he does not feel well but it only lasts a few hours and then may not return for a week or two. On this particular day with no other distractions I stared at Clark and tried to imagine what he was feeling and once again thought about his life. Life is good for him. He knows he is loved. I thought about his sense of security and confidence. And as I sat there watching his face a profound feeling of assurance and calm came over me telling me that I am where I am supposed to be, doing what I am doing, helping two special sons who have fragile X. Most friends my age are empty nesters but we never will be and I’m glad. From “A Journey Called Life” by an unknown author “Each of us is a vital thread in another person's tapestry. Our lives are woven together for a reason.”

Heart Palpitations

2011-09-10T16:46:00.000-07:00

Wednesday was a trip to the eye doctor for Phil and his driver—me. His anxiety was in full force from the time we exited the car in the parking lot and then re-entered it two hours later. This was his first time to Dr. M. In fact, he had not been to an ophthalmologist since he was a toddler. Phil was born with strabismus and had corrective surgery when he was nine months old so we spent many hours in the waiting room during the first three years of his life.

The visit on Wednesday was a routine eye exam but a new doctor and a new office presented perfect ingredients for anxiety. We entered the waiting room, signed in, and were handed a stack of papers to fill out and sign. When I returned them to the receptionist a few hours later Phil followed me and proceeded to kick me playfully in my posterior. My warning “That was not appropriate!” was greeted with laughter.

“Mr. Tucker” was soon announced. Phil informed me, the nurse, and the waiting room that he was not Mr. Tucker, he was Philip. He stood up and beckoned me to follow. I realized when I sat down in the exam room that my palms were sweaty and my heart rate had increased considerably. The nurse asked Phil to read the smallest line he could. She might as well have been speaking in Russian. She caught on quickly that that approach would not work. She then started showing him single letters in various sizes while repeating over and over “Keep your left eye covered. Don’t peek. Now keep your right eye covered.” When she finished I followed her out of the room and asked if Dr. M. would be able to handle Phil. She assured me he would. I had my doubts.

Next came the person to dilate his eyes. “Philip, open your eyes. Close your mouth.” “Philip, you must close your mouth and open your eyes.” “Philip!” As soon as she was able to get a drop in each eye Phil squeezed his eyes shut and started rubbing them. “Philip, you cannot do that. We’ll have to put more drops in your eyes. Close your mouth. Open your eyes.” Beads of perspiration stood out on her forehead after the third try which she deemed successful.

We were left alone until Dr. M. arrived. Phil examined every instrument, every button while exclaiming “This is big, where is the up/down button, this is for my chin, this is….” and on and on and on he went. Constant motion. Finally in came Dr. M. After they shook hands Phil immediately wanted to know if Dr. M. was married. “Yes.” “Children?” “Yes, in fact, it is my daughter’s birthday today. She is nine.” He had more questions but they waited until after the exam which was quick but thorough. On the way to the car Phil asked where Dr. M. parked his car and where is his house? I had to admit I did not know the answers to all his questions.

Exercising Still Required

2011-09-06T17:16:00.001-07:00

A vacation is no excuse for not exercising and that included Clark and Phil who were required to walk every day. Excuses were abundant “But we’re on vacation.” “It’s too hot.” “My feet hurt.” “I don’t want to.” until they realized we meant what we said. They had to walk 1 ½ miles on a path that ran in front of where we were staying. “Okay,” we told them “you only have to walk to ‘Cat in the Hat’ and then you can come back.” Since they didn’t know what we were talking about we walked with them the first time to point out the turnaround point (1 ½ miles roundtrip).

Phil is a no nonsense guy. If he knows he has to do something he gets up and gets going so when he would leave Clark behind Clark decided he would rather walk three miles with Paul and me than 1½ miles on his own. There was an unexpected bonus to walking with us. He could throw rocks to the rocks below when we stopped to watch the ocean. It was a good vacation with a few miles put on our feet.

A New Tradition

2011-08-28T22:09:00.000-07:00

Vacations are made for memories. On our most recent vacation we began what I think will become a tradition. Here is what I had to say last month. “Today it was a two-hour bike ride on the paved trail along the ocean which started out on a sour note. I failed to keep track of Philip and, as a result, we spent a considerable amount of time and energy looking for him. What’s new? We often lose him. You would think we would just expect it and increase our vigilance but we forget how slithery he is. Since he can never explain where he was when he wasn’t with us Paul and I try to put together a scenario that satisfies our curiosity. Usually a threat works after that—no ice cream tonight (a nightly treat while we are on vacation) if you do not stay with us until we return the bikes. He stayed with us until the bikes were returned but in his hurry to get back to our unit so he could watch TV he missed out on huge snow cones (shaved ice at Ono’s) with ice cream in the middle which delighted the tongue while cooling us off.”

Changes

2011-08-24T15:36:00.000-07:00

I was gone all last week—three days to the MIND Institute and then a day in San Diego for a board meeting. So, Monday meant a trip to Sam’s Club to replenish cupboards and get new glasses for Clark. He has been without them for weeks ever since the frame broke. I thought we would get the same type as his old—wire frame. The thought came to me that I should get his opinion. “Clark, which glasses would you like?” A large smile spread across his face. “Just like Daddy’s.” he said without hesitation. So that’s what we picked out.
The young woman who was helping us smiled and commented on how sweet his comment was. I could tell she was enjoying him. Because he was feeling happy I got a hug, kiss and an “I love you.” Some change is good.

On the other hand, we are remodeling the “boys’ bathroom.” This change brings a high degree of anxiety for Clark as tile, linoleum, the toilet, the counter are removed. The foreman told me that Clark has talked to him about reporting this to someone in authority. Fortunately, John, who has a son with Asperger’s Syndrome, is very understanding and patient and even took Clark into the bathroom to explain what he is doing and how he will fix all the holes. Even though this is a good change, it brings with it anxiety and internal turmoil for one member of our family.

What Next???

2011-08-08T22:20:00.000-07:00

When Phil was 18 and in the high school transition program he volunteered (actually he was in training) at the headquarters for Safeco Insurance which was about five miles from our house. The dress code was shirts and ties for the men and that included him. He looked so handsome and professional. His main responsibilities were in the cafeteria cleaning tables and filling salt and pepper shakers. One morning he came down for breakfast before going to catch his bus. His left eyebrow was gone.

After the shock drained I finally sputtered out “What happened???”

“I don’t know.” He gave his usual response.

We put together the scenario. Phil had an electric shaver. As he shaved and watched himself in the mirror he shaved higher and higher. “Hmmm, I wonder what would happen if I….?”

We penciled in his eyebrow for weeks until a new one grew back.

Then when he was in his early 20s and working at a thrift store he wanted to see the effect that same razor would have on his head. Taken from my journal on May 20, 2000—
“Phil mentioned this week that ‘Adam cuts his own hair.’ I did not recognize the comment as a foreshadowing but it was. Pip and Jessica found him (in the bathroom) and had to clean up what he did. He is not completely bald but almost. ‘I like it!’ Phil told me.”

Phil and a good friend of the family

Last Friday I cut his hair. When I finished and was just about ready to do the trim work my attention was diverted while I visited with my daughter. Phil took the trimmer out of my hand and faster than my reflex he made a fashion statement.

The Apology

2011-08-06T21:53:00.000-07:00

When our doorbell sounded a few days ago I opened the door to a neighbor who stood there with tears in her eyes. She wanted to talk to Clark. She told me she had been unkind to him and wanted to apologize. She admitted that all his talking drives her crazy. I was surprised at her honesty but went on to agree that there are times when it drives me crazy. It’s like a scratched vinyl record. The needle tries to move on but keeps falling back into the scratch and repeating over and over until you lift the needle. Clark and I had stopped to talk to her a few days ago. She was complaining about an acquaintance who she was very annoyed with and ended up calling him a swear word. Clark cannot tolerate swear words. He started to lecture her and I had an obligation I had to get to so I left. That’s when she must have been unkind. I called Clark to come downstairs to talk to her. He asked me to leave. I did. Soon she was gone and Clark was telling what a nice person she was and that he gave her a hug. He has always been quick to forgive.

A Wonderful Summer Day

2011-07-30T22:37:00.000-07:00

I love Special Olympics! I’ve said it before and you will hear me say it again. I especially love it on a warm spring or summer day. At 7:00 this morning I went downstairs and found Clark sitting on the couch, dressed and ready to go. We wouldn’t leave for another 1 ½ hours. Even then we arrived early for the district softball tournament. It gave Clark and Phil time to hang out with friends and it gave Paul and me time to sit in the shade and read before their first game. Because we don’t expect their team to play like professionals we get very excited over many small things that they do like getting a hit or catching a ball or throwing the ball and putting someone out. They played three games spread out over the day so Paul and I had time for a short snooze, time to watch people, time to drive to Taco Bell for lunch (the teams were fed at the ballpark), time to visit with friends we have made over the years, and time for more reading on the grass with bare feet. Soon the games were over and the awards given (their team received the bronze in their division and will not be going to state), pictures taken and we were driving back home, exhausted and happy. In another year we will be back again, doing the same thing and loving it as much.

Clark made it to first a couple of times.

Phil loves the catcher's gear.

My two amazing sons.

Warning Sign

2011-07-27T20:24:00.001-07:00

Our family had just checked into our temporary home away from home when Phil noticed the “Do not disturb” sign hanging off the door knob. He took it off, studied it for a minute, and then announced “No beds allowed.”

We're Home!

2011-07-24T22:34:00.000-07:00

After over a month away from home and sporadic Internet service we are home—to all that awaits when you’ve been away for that long. It has been said that a vacation (actually all of our time away was not vacation, some was volunteer work) is most needed when you’ve just returned from one. Just because you are away does not mean that everything will come to a standstill. The fact is we’re not feeling too sorry for ourselves, just overwhelmed. I’ve noticed that Clark and Phil do not feel the weight. They adjust quite easily. Life just goes on for them, only in a different location. Their anxiety manifests itself in the transition from one location to another. And for them it is really good to be home as long as they are with us. I wrote and took pictures while we were gone which I will post over the next week or two.

Of course the lawn refused to stop growing while we were gone. Our #2 son mowed part of the lawn while we were gone but the lawnmower broke. Fortunately a new one had already been purchased but needed to be put together when we got home. Here is Phil, who always mows the lawn, receiving instructions on using the new mower.

The garden which we didn't plant this year was thick with weeds. A few volunteer tomato plants were found in the growth.

While doing yard work time was taken to eat and watch a Pioneer Day Commemoration Concert. Clark didn't last very long.

"Is my mouth crooked?"

2011-06-28T20:46:00.000-07:00

That is what Clark asked me yesterday. I looked at him, trying to figure out why he asked that question. I smiled and told him “no” that his mouth was not crooked. A short while later the question came again. “Is my mouth crooked?” as he pushed his face up close to mine. I again smiled and told him no. Soon he was at it again “Is my mouth crooked?” I tried to reassure him it wasn't. When I looked at his furrowed brow I could tell he was not convinced so I took his jaw in my hands and making loud machine-like noises I pretended to straighten his mouth. He smiled. I smiled. And Phil burst out laughing. “Do it again.” Phil commanded. I did. It must have worked; Clark stopped asking if his mouth was crooked.

A Trip to Olympia

2011-06-14T19:57:00.000-07:00

A quick day trip to Olympia last fall yielded fond memories and two wonderful pictures that serve as a reminder of a time when a one-hour drive would physically connect us with our youngest daughter, her husband and two very cute grandsons. Clark and Phil had bowling that day from 9:00-noon and then we traveled south where we visited while grandsons slept. For a very late lunch we decided to pile in the van and go to Herfy’s, a couple of miles away, nine of us in a seven-seatbelt van. Here is Phil sitting in the very back where we usually put groceries. It is not hard to tell that he enjoyed his “special” seat.

Clark is holding the hand of a very compliant 21-month old.

Where is the 2?

2011-06-09T20:46:00.001-07:00

I checked on Clark one morning while he was on the treadmill doing three miles an hour at a 12% incline. He is usually sweaty when he finishes. He had gone over a mile but has to go two so I left him and went outside for my own walk. When I came back in the house a while later I could hear the treadmill. “He must have gotten off while I was gone and has just gotten back on.” I went in to check. He was up to almost four miles and was dripping wet and telling me he had to go to the “2.” Months ago I put an arrow by the first digit in distance so that he would know when he could press stop. Somehow he had gotten sidetracked and missed the “2” and was still full of hope that he would see it. I wondered how far he would have gone if I had not gone in to check on him again.

Another Combined Effort

2011-06-03T18:27:00.000-07:00

When you are married to a concrete sequential you can expect to see “detail the cars” come up on his radar once a year. Today was the day—a day scripted for car washing, waxing and detailing—70 degrees and sunny. The energy level was high when the five of us went outside at 1:30 to begin and completely gone when we picked up the last rag and put away the Turtle wax at 5:30. By then patience had been stretched so thin it snapped. I had taken out my CD player so we could listen to an eclectic selection of Brazilian music, Hawaiian music and music from the 60s. We sang along and did some dancing when we weren’t quite so intent on our own specific job. But even music didn’t help when the afternoon wore on and on. Was it worth it? We saved hundreds of dollars and probably did a better job than a professional detailer but most important was the working together as a family. And the cars do look great! And we don’t have to do this for another 12 months.

A Combined Effort

2011-05-31T20:29:00.000-07:00

Paul and I stood on the side porch this morning saying good-bye to Phil who we could not see, only hear, laughing and making comments. He was on the other side of the 8-foot tall arborvitae (the hedge we planted about 25 years ago) on his way to “teen club.” “Tell Clarkstein to take his pills!” we heard him yell as he traveled along on his scooter on the dead end street that runs alongside of our yard.

We leave Clark’s pills out (vitamins and seizure medication) on the counter so that at least one of the five of us will remember. And usually someone does. I went in the house and checked. This morning Clark must have remembered all on his own because his morning pills were gone and he was now ready to go out the door to “teen club.” He had made his lunch and unloaded the dishwasher. They would both return in three hours, separately.

The Exciting Adventure

2011-05-29T22:27:00.000-07:00

Wednesday morning I told Clark and Phil I was taking them somewhere special and “You will like it.”

“Tell us. Where are we going?”

“I’m not telling you but I know you will like it. We’ll go after track practice.”

At 6:20 we left for our exciting adventure—the three of us, my two sons with fragile X and me. I was taking them to Shoreline Live!, an annual variety show featuring music and dance, written and performed by individuals with disabilities in the Creative Arts for Life class. Excitement mounted as we drove north and then it exploded into high fives, shouts and laughter when we finally entered the auditorium and Clark and Phil saw many of their peers sitting on the front row ready to perform. There were about 20-25 friends who also participate in Special Olympics and “teen club.” During the 1 ½ hours, the duration of the program, I thought about the eight months of weekly classes to get to this point. I thought about my gratitude for all those who patiently work with people like my sons. And I thought about how much more exciting and meaningful life is for all these participants who exuded confidence and enthusiasm. I thought about this again Saturday morning as I sat in the car in the parking lot by the field where Clark and Phil were practicing their running for the state Special Olympics track and field meet coming up this Saturday. I watched one of their teammates arrive late. He shuffled by my car so I watched him as he approached the speed bump, about four inches high. He paused and then hoisted himself up on top, another pause, and then down the other side. He eventually made it to the field where patient (and sometimes not-so-patient but always encouraging) volunteers coaxed him to walk faster. I think he was programmed for only one speed—but he kept going. I silently cheered for him as he came in last, waaaay last. I thought about all those on the team who could have been at home on a Saturday morning, probably watching television, but instead were outside getting lots of exercise and learning and relearning how to stay in their own lane and go faster.

Destruction and Dismay

2011-05-22T21:43:00.000-07:00

I have decided I will not stay at home if we ever allow professional (and that is a very questionable title) pruners on our premises again. I admit we would be living in a jungle if it were up to me even though I know pruning is good and necessary. We had them here on Friday for a few hours and I couldn’t wait for them to be gone. We paid them good money to prune trees that I couldn’t and wouldn’t do. Now we have trees that I think are too thinned out and too chopped off. While I was inside the house, churning, and with earphones on, Clark was outside watching, and enjoying, all the cutting and chopping.

The Invitational

2011-05-18T17:45:00.000-07:00

The gift of warmth and a visible sun was ours last Saturday when we went to the invitational track meet. It is a casual event. We dropped Clark and Phil off close to the track and bleachers and went to park. By the time we walked down to the track Clark was running the mile. “What in the world is he doing in the mile?” we asked each other. We soon found out. He was supposed to get in the line for the 100m and by mistake got in the line for the 1600m. He ran much of the first lap but then stood on the sidelines for the next two and joined in for the final lap. We were very proud of him for completing it. I am sure he wondered, but couldn’t verbalize, why his race was going on and on and on. They participated in their regular events—shot put, 200m, 100m and relay. We celebrated a good day for all by going to MacDonald’s for ice cream.

Clark decided against taking his ribbons to church for show and tell.

Phil, without fanfare, quietly deposited his ribbons in the garbage when he arrived home. I guess he has decided that medals are the only ones worth keeping and the Invitational only gives out ribbons.

District Track Meet

2011-05-13T18:15:00.001-07:00

On one of the most beautiful days of spring we gathered for the district Special Olympics track meet a few miles from our house. What a contrast to one district meet a few years ago when the temperature never left the mid 40s. The wind blew and the rain wouldn’t leave us alone. We were happy to have that day come to an end. But not the district meet this year. No better way to spend a Saturday—watching two of my favorite people competing while feeling the warmth of the sun. Competing is not really an accurate word for Special Olympics. Yes, getting a medal determines whether they will go to state (and we have already been told that both will be going to Ft. Lewis the first Saturday in June) but it is about being with peers, feeling special, hearing the crowd cheer, eating lunch prepared by a local club or church and going home with medals and/or ribbons. Tomorrow is an invitational track meet and according to the weather report we will be watching it in the rain. Clark taking his medals to church so he can show people.

When Phil's brother who lives in Australia saw this video clip he responded with this: "Tell Flip-zip-the-big-fat-lip that he’s a goofball for doing “raise the roof” as he’s coming down the home stretch. Was he racing against a bunch of people on crutches? He had them beat by 100 meters or more. How long was the race?"

Phil's Agenda

2011-05-04T17:27:00.000-07:00

“Get away from me. I have a show to do.” This was said with laughter, yet firmness, as Phil ran away from Paul and planted himself in front of the TV. Paul wanted to wrestle but Phil had his own agenda in mind, watching and participating in The Price Is Right. After all, who would announce “Come on down!” with George Gray, the newest announcer. Phil became hooked on The Price Is Right when Grandma moved in with us for just a few months and that was eleven years ago. The two of them would watch together.

Through the years Phil has received many microphones as gifts but his favorite is a drumstick he received from one of his brothers many years ago. He does use a second (gift) microphone for the show case. These two should last him for many years.

Expect the Unexpected

2011-04-27T17:27:00.001-07:00

It was a week ago that Clark had a complete physical. He’ll be getting one yearly since he is now 40. Yikes! To me he is still the young boy who only needs a physical periodically (excluding yearly visits to the dentist and also to the neurologist because of his seizures). My husband and I took him with a small list of questions to ask the doctor. Part way through the physical Paul needed to leave for his scheduled racquetball game. I was surprised to find Clark finished when I returned after taking Paul to meet up with his racquetball buddy. Clark showed me his arms, each with a bandage, and tried telling me something about going to the hospital.

“Did you give blood?”

“No.”

“Did they fill a small vial with your blood?

“Yes.”

“Why do you have two bandages?”

“I don’t know.”

“I’m going in to talk to the doctor and you can stay in the car.”

The doctor, a long-time family friend, explained to me that he did indeed get one vial but two are needed. He had trouble with Clark’s veins (and didn’t want to hurt him) so we were to go to the out-patient clinic by the hospital for a blood draw. We went. I was happy to report when we checked in and I handed the receptionist the prescription that Clark had been fasting. We sat in the waiting room. Clark picked up my book. I was amazed that he quickly found words like “Rose” (his sister-in-law), “Thomas” (the name of a friend) and “Fox” (that’s what he calls fragile X—F.O.X.) but we mostly watched a young teenager with multiply problems who sat with two adults, one on each side of him. He was blind, couldn’t talk (he signed the word water) and had difficult behavior. When he was handed the glass of water he threw out his arms and the water soaked the front of his sweatshirt. When he was told he would have to take off his sweatshirt he decided he wanted more off and tried taking off his shirt and was successful in taking off his shoes. I was hoping the adults would look at me so I could give them a smile of encouragement. I know what it is like to sit in a waiting room with unruly children who do embarrassing things that attract attention. His name was finally called and then Clark’s. While Clark was giving blood (he has no fear) I opened my purse and looked for the granola bar I had put in before we left home. I knew Clark would be hungry. As he emerged I found an empty wrapper. When I confronted him he told me he was very sneaky. Yes indeed. Guess when he had eaten it—while I was in talking to the doctor and he was sitting in the car.

9:30 a.m. and "Where is Clark?"

2011-04-21T10:00:00.000-07:00

Someone noticed we hadn’t yet seen Clark today. I left the study, walked down the hall and opened his door.

I could see slight movement from the covers. When Clark and Phil shared a room Phil was on the top bunk but he moved out and into our youngest’s bedroom when she moved out of the house. I used to fix the top bedspread so it didn’t hang down but Clark kept putting it back so I’ve given up. He likes the tent effect.

“Clark, it is time to get up (actually it is well past time to get up) and get on the treadmill. Dad is downstairs now but if you don’t get up you will be exercising by yourself (and if you don’t walk two miles you will not be eating breakfast).”
He is downstairs now and on the treadmill.

"I beat you!"

2011-04-18T19:36:00.000-07:00

Even before I had swung my feet out from the under the covers a little before 7:00 I could hear the treadmill going in the room beneath our bedroom. Who is that? Phil never gets on the treadmill, Cherlyn is at work and Clark sleeps in and doesn’t get on the treadmill until he has been prodded and threatened. It wasn't long until the question was answered. Clark came into our bedroom and informed Paul (who uses weights while Clark is on the treadmill) he would have to exercise alone because “I beat you.”

I left our room and went into the study. Phil was just getting ready to go outside for his mile walk. I know he loves it when he sees me going on my walk at the same time and we pass, Phil on one of the street and me on the other, so I hurriedly got ready and went out. Finally I could see him coming toward me laughing loudly and picking up his pace as I pretended to pick up mine. I walked to the corner and crossed the street. Soon I could see Phil’s legs facing my direction (his body was hidden by tree limbs). I could tell as soon as he saw me—he turned and started running out of sight. I kept walking and soon turned to go up the hill. Toward the top I could see Phil again and, of course, as soon as he saw me he turned and starting running again. Well, needlesstosay, he was on our street ahead of me. When he saw me he laughed again and said “I beat you.”

Bert and Ernie

2011-04-12T19:58:00.000-07:00

My youngest, a daughter who is married with two young children, started a blog about a week ago. I got permission from her to include this post on my blog. Her bedroom was directly across the hall from Clark's and Phil's.

“This video cracks me up!

It reminds me of my 2 older brothers who have fragile x syndrome. Growing up they shared a room. There would be times when we were all in bed and I would hear Phil (he’s Ernie) laughing and making comments to Clark (he’s Bert). Clark wants nothing to do with the conversation cause it’s bedtime and if they don’t go to sleep they will get in trouble. These comments would always egg Phil on to being more loud and obnoxious and sometimes cause him to get up and turn on the light just to bother Clark. Clark’s remarks were much like Bert’s in this video “knock it off, Phil”, “go to sleep, Phil”, “turn off the light, Philip!”, “I’m telling Mom on you and you’re going to be in big, BIG trouble.” 15 years later their comments to each other are still the same :) I sure love my brothers! And they provide for great stories!”

What a Pig Sty!

2011-04-10T18:16:00.001-07:00

Phil, the tidy, organized one, cannot tolerate much mess before he is mumbling about the pig sty and picking up and putting away toys and stuff that are strewn around. When we have two very little people here the messes occur constantly. But he and Clark take time to play with the two messy ones.

Chaos and Contentment

2011-04-05T07:52:00.000-07:00

It is that time of year again that seems to come more often than every six months. I always start out feeling organized and enthused twice a year as we take out the old and put in the new in our 72-hour emergency backpacks, discarded backpacks from years gone by when our kids were in school. We spread the backpacks out on the ping pong table with each person responsible for one or two. My jobs include buying replacement items and supervising two in particular who are responsible for retrieving the backpacks from hooks in the garage and then returning them when we are finished. I am also the receiver of the old items and the distributor of the new which sounds simple but can quickly descend into chaos. “I need new peanut butter.” comes from one side of the ping pong table. “I need granola bars.” from the other and I am trying desperately to keep the old separated from the new. Why do we put ourselves through this??? Actually that question is simple to answer. We have seen the devastation that comes when an unexpected disaster hits and we want to do our part (which includes Clark and Phil too) so that we could survive for 72 hours.

We Have Returned

2011-04-03T21:35:00.000-07:00

It was a fast 10-day trip for us but a very long 10 days for Clark. It was reported that he wouldn’t smile for the first two days we were gone but from there it got better until we returned. One of the endearing things about bringing back gifts for Clark and Phil is they can be simple and inexpensive—just something that says we thought about them.

Unique cookies called roomboter stroopwafel from The Netherlands were the gifts for each of them for this trip. What would they have done with wooden shoes or a bouquet of tulips anyway?

Note to Clark

2011-03-21T05:37:00.000-07:00

Clark gets so sad when I go out of town even though the house will be full of family. He follows me around telling me that he loves me and he will miss me and that he is sad and is going to cry. I decided to write him a note. He'll like it.

"Let me tell."

2011-03-19T12:39:00.000-07:00

A couple of months ago a friend gave us a large stack of discs with every episode of Green Acres. It aired from 1965-1971, my college and early marriage years—a time when I watched very little television. I was aware of the show but it was one I would not have chosen to watch so when we received all episodes as a gift I said to my family “Count me out. You can watch it when I am not at home.” That day soon came when the rest of the family watched episode after episode in one sitting. I returned home later in the evening and was told by an enthused foursome that I should give the show a try while they laughed together telling me the funny things that happened. “Okay,” I thought “I will watch one episode. That’s all.” That was 108 episodes ago. I am hooked. When I read a review of the series that said it appealed not only to adults but to children because of its silliness and slapstick, I thought “That’s me. I have always liked I Love Lucy.” So, most nights you will find us laughing together as we watch an episode or two. What a great way to end the day (besides reading in bed before the light is turned off).

Last night Paul had some things to do at his desk so the rest of us went downstairs to watch two episodes. This morning around the kitchen table while we ate breakfast, we talked about Green Acres. Phil waved his arm in the air “Let me tell. Let me tell.” so we let him tell what he could while we all chimed in laughing and adding details, almost enjoying it more in the retelling.

The Special Breakfast

2011-03-15T21:42:00.000-07:00

I was up early for a Saturday morning and at my desk. Later in the morning I would be involved in a service project and I had some things I needed to accomplish before I left. I could smell something cooking downstairs. Hey, I thought I was the only one awake that early. I went downstairs to investigate. There was Clark decked out in his apron cooking Spam. The toaster was out and the eggs he was going to fry. His concept of time is a little weak. I told him it would be a while until everyone was awake and ready to eat breakfast. Besides Paul and I would want to take a long walk. So, the griddle was unplugged. Soon the house came to life and we took our walk. When we entered the house almost an hour later there was a slight burn smell in the air. Clark had recooked the Spam and fried up a carton of 18 eggs that could have passed for miniature Frisbees. We all praised him for making breakfast and sat down for a memorable breakfast. Not one unkind comment was made about the rubberized eggs or the Spam that required a steak knife. Clark sawing his Spam.

Errands with Clark

2011-03-14T16:12:00.001-07:00

Clark was out of spending money so that would be one of our errands—first to the bank to deposit checks for me and to get money for Clark out of his account, then to the library to pick up a book which I had placed on hold and finally to the post office to mail two packages. It would take about an hour with travel time and should be a fun time with just Clark. I was hoping it would also break his perseveration. All morning he had been talking to me about a motor home he wants to buy when he has enough money. It was a one-sided conversation on a topic which has been popular for a few years. I did not anticipate problems as we pulled out of the garage but we encountered a major one as soon as we tried to use the ATM machine at the bank. I let Clark put in his card and then I punched in his pin number. I checked his balance and decided to take money out of his checking account. I punched in the amount. The machine commanded me to take the money. The door opened and closed, opened and closed but no money appeared. The camera would show Clark and me bent over to better examine the door and leaving with nothing. We went in the bank and explained the situation to three individuals. There would have to be an internal investigation. Clark left empty handed. Now he had something new to perseverate about, plus anxiety, plus something new and unpleasant outside the norm. His knuckles were white, his brow was furrowed. I was glad to get out of the van alone to mail the packages. When I returned to the van I turned on music which silenced him. A few days later the money was put back in his account but today a letter arrived informing us that the bank needed time to perform their investigation. I am not telling Clark.

Phil's Assistant

2011-03-04T17:35:00.000-08:00

Before nieces and nephews started arriving on the scene almost seven years ago Paul and I wondered how Clark and Phil would handle them. Would they be patient and gentle? Would they know what to do if one of them did something wrong? What if a situation required a judgment call (a toddler goes outside by herself when no one else notices), what would they do? Very few concerns have materialized. Most of the time we are amazed at how well they both do. Clark has more patience than most of us when trying to calm a crying baby and is willing to walk around or rock one for a long time. One day last year we were able to capture on video a sweet situation. I had asked Phil to take everything out of the “can cupboard” in the kitchen so I could wipe down the shelves and reorganize. Here is what happened.

Our Annual Fragile X Conference

2011-03-01T20:31:00.000-08:00

Why is it that sometimes it is so hard to organize your thoughts to put on paper and so you keep procrastinating? Such has been the case for me for the past few days. We (Fragile X Association of Washington State) had a very successful annual fragile X conference on Saturday and there is much I want to share concerning two amazing sons. Phil’s excitement for the conference was evident many weeks ago. Clark wasn’t sure he wanted to go because he remembered the seizures he had at last year’s conference. He had had a few seizures recently so I was pretty sure he would be okay and he was. I had boxes of things to take—books, pamphlets, pictures, videos, items for the continental breakfast, banner, large poster, and more. Clark and Phil carried everything downstairs in our house, put it all in the back of the van, hauled it in at Children’s where the conference was held, helped set up, and then at the end of the day took everything down, put it in the back of the van, took it into our house and upstairs. Now it is up to me to get it all put away. They passed out papers to attendees and showed families with young children what adults with fragile X look like and how they behave. I sat in the front row since I was introducing our keynote speaker, Marcia Braden*, so Phil sat there also, at least for part of the time. He was typical Phil—up, down, up down. Clark preferred sitting in back with his father. At the end of the day I asked Phil what he liked best. “Lunch!” he answered with a smile.

*"Dr. Braden is the most experienced psychologist in the field of Fragile X that I know. She has seen patients for over 20 years and her behavioral and academic programs have made a wonderful difference for the children she treats.” Dr. Randi Hagerman, M.D. – Medical Director of the M.I.N.D. Institute (She was our keynote speaker last year.)

22,000 games in 84 years

2011-02-20T20:56:00.000-08:00

I remember the year I first saw the Harlem Globetrotters. They came to my high school with their antics, Curly and Meadowlark Lemon, and Sweet Georgia Brown blaring to fill all space in our high school/community gym. I laughed for two hours. I saw them for the second time yesterday. This time they came with Slingshot, Bingo and Special K and, of course, Sweet Georgia Brown blaring. I laughed for two hours at familiar antics and new routines. Phil, especially, loved it and showed it with his typical enthusiasm. And I could tell Clark liked it. Notice the slightly pleasant look on his face? It was a great family outing.

Phil with Slingshot and Bingo

The Journey

2011-02-16T12:01:00.000-08:00

As I lay in bed this morning slowing waking up my eyes were drawn to a ceramic candle holder that sits atop a radio across from our bed. I thought back ten years ago when we purchased it. We were chaperoning a group of teenage girls who were on a singing tour (our youngest was a part of that talented group). In one of the cities there was a young man standing by a stone wall with his candle holders displayed on top. As my husband and I stood there admiring these inexpensive candle holders he had made I looked more closely at the young man and this feeling swept over me. We are fellow travelers on this earth at this moment in time. We are separated by many miles and many years but we have much in common, in fact, more in common than not. Our paths will cross for a few minutes but it is highly unlikely we will ever see one another again. “What are his dreams, his desires, his pains, his disappointments, his joy, his life experiences?” I wondered as I stood there on the side of the street as we were deciding to make a purchase.

I have had those same feelings come over me as I’ve observed my two sons with fragile X. Sometimes when I am sitting on the couch next to Clark I will turn my head and study his profile, this number one son. With a heart pumping blood throughout his body, giving him life, he is much like me. He has dreams and feelings of love, sadness when someone calls him a name, pain when he is hurt, laughter when he is happy, enjoyment in eating the entire apple. Our paths, his and mine, run along together and I feel blessed to be taking this journey together.

Final Day of Bowling

2011-02-06T17:13:00.000-08:00

Yesterday was the final day of bowling for Clark and Phil until August when it will start up again.

I am glad they are enthused to go each Saturday morning for almost six months.

I am glad the bowling alley is only 15 minutes away.
I am glad their sister drives them most Saturdays. I used to.
I appreciate all those who volunteer their time to help the bowlers.
I appreciate the bowling alley for providing lanes for special population bowlers, three games for $5. What a deal!

And I love three hours of quiet while they are gone!

The New Look

2011-02-02T16:48:00.000-08:00

Emily, a friend of mine, did this--put together a new look for my blog. I remember the day that picture was taken—April 7, 2006. Paul had a Friday off so after working around the house much of the day our family decided to travel 56 miles north of our home to Skagit Valley to the annual tulip festival. It cost less than traveling almost 5,000 miles to the Netherlands. It is an incredible sight to see acres of colors.

This snapshot of the the three of us close together and smiling captures a moment in time. For me it says we like each other, we enjoy being together, we like being silly and going places together. According to my journal one member of the family was grumpy but we don’t see that in this picture. Knowing what the daily landscape of our lives looks like I am sure there was name calling and tattling also on this excursion. Every day is reminders and remembering—reminders to "talk nicely", "be kind", "no name calling", "say you're sorry" and remembering that in some ways Clark and Phil are stuck at six years old.

And in some ways the picture is misleading. Clark is the hugger, the kissy one who tells me he loves me at least twenty times a day. I’ve never counted but I don’t think that is an exaggeration. Phil usually will have none of that but he has other ways of showing his love so I am content and relish the times he does lean into me and put his arm around me for a picture.

Free Entertainment

2011-01-30T17:07:00.000-08:00

As Paul and I sat with friends on Friday evening watching a televised broadcast, he put his arm around me and played with my hair and then gave it a flip and then another. I turned to look at him. He was smiling and so was I as we remembered together an incident that happened to me about ten years ago. I was in a church meeting, sitting on the second row in the chapel. On one side of me was Phil and on the other side was my youngest child. Paul was in another church meeting elsewhere. As we sat listening to the speaker at the podium who was directly in front of us 10 feet away Phil started to brush my shoulder-length hair off my shoulder and onto my back and then he proceeded to scratch my head. It felt great I recorded in my journal. Then in an instant as though a switch had been thrown, he started flipping my hair so it was flying and quickly covered my face. I smoothed it down, uncovered my face, and then leaned over to say something to Phil but before I could speak he whispered very clearly in a slow affected voice “Knock it off, Sonny.” I tried to remain serious but failed miserably. My laughter only brought encouragement so he tried flipping my hair again. We had done enough entertaining. I snapped out of it and shook my head no and to my relief he stopped. I was under no illusion that I could drag a 23-year-old out of the meeting.

State of the Union Haircut

2011-01-26T19:33:00.000-08:00

Interpretation:
Mom
Philip Tucker
Tomorrow
January Sonny
Saturday 1-22
Haircut

I wanted to watch the State of the Union last night and Phil wanted his hair cut. His first message to me came last week when he attached it to my back with tape and then ran out of the room laughing. I told him no. In a few days another note was attached to my back with much laughing. This time I told him yes. I then promptly forgot. Tuesday afternoon when I was preparing dinner Phil prepared for the haircut by getting everything ready. We both won—he got a haircut while we watched the State of the Union address.

Even (anxious) Clark got a haircut.
“I’ll bet you like President Obama’s haircut, don’t you Phil.” I said as I cut his hair.

Anxiety

2011-01-23T21:46:00.001-08:00

Clark was well into adulthood before it dawned on me that certain behavior and looks I had seen during his lifetime was anxiety. It is usually when we are out in public that he responds negatively to a comment made by someone he doesn’t know. “I’m telling the bishop (head of our church congregation).” He used to threaten to tell Mr. Harndon (a high school teacher). It is made when he doesn’t like or understand a comment or it is unkind or it is an unfamiliar situation. I wish I could say I always handle his anxiety with patience and kindness but often it is with impatience as I try to snap him out of it immediately and always failing with that approach. Clark brought this picture home a couple of years ago that someone at Special Olympics had taken. I hated it and put it away so I wouldn’t see it. I am glad I didn’t throw it away because I’ve come to understand better that he is looking very anxious. Now as I look at the picture I wonder what happened to him. What was he thinking? What had he done? What had he said that alienated others? We see daily his anxiety. Now I recognize it. I know there is prescription medication for it but because Clark takes about 20 pills a day for his seizures I am not ready to add one more. I’ve had two experiences with Clark recently that prompted this post.

I did not tell in the previous post that when Clark and I went to Macy’s he sat outside the dressing area while I tried on clothes. When I came out of the dressing room Clark was calmly waiting but he was not smiling. When we walked to the counter to purchase some items he started muttering about telling the bishop. It was then I realized that someone had tried talking to him while I was trying on clothes. It was the salesperson. I am sure she was frustrated and confused with Clark’s behavior. I quietly but firmly told Clark to stop talking. He finally did.

The other experience happened this past week when I took my car in for an emissions test. I took Clark with me. It was while we were waiting for our turn that I realized that I had never taken Clark before. We watched the car in front of us and then it was our turn. The man told me that I would need to get out of the car for a few minutes but, pointing to Clark, “He can stay.” As I turned my head and looked at Clark I realized that this could be a very anxious moment for him so I asked him if he would like to get out of the car with me. He smiled and said no. “Are you going to be okay while I sit over there?” “Yes.” He smiled again. I got out while he sat with the stranger. All went well and he was still happy when I got back in the car.

So—in the future when I take Clark with me will I remember to talk to him about a potential situation? I don’t know but I hope so. I am going to try.

"I'm so excited!"

2011-01-15T22:16:00.000-08:00

There is nothing like having a four or a forty year old at your house to stir up some internal excitement. We were going to an outlet mall and we told Clark he could go too. He would go anywhere as long as he got to be with his parents. In fact, today he was happy he was chosen to go with me to the bread store, Bath and Body Works and Macy’s. Phil, on the other hand, did not want to go to the outlet mall but that is nothing new. He always says “I’m not going.” and when we enforce mandatory attendance he loves it, whether it’s going to Sam’s Club for shopping or to see River Dance at The Paramount or Lion King at The 5th Avenue. So, while we were at the outlet mall and out to dinner Phil was home alone fixing food and watching TV all by himself. If we could have spied on him, I am sure we would have found him cheering and clapping as he watched TV and thoroughly enjoying his time alone. When we pulled in the garage, though, after being gone for six hours the door in to the house opened and there was Phil welcoming us home.

Excitement in Sunday School Class

2011-01-09T22:31:00.000-08:00

Paul was teaching Sunday School this morning as he has each Sunday for almost nine years. He asked Phil and Clark to pass out papers to class members. Phil promptly told everyone who wanted a paper to hold their hands up. “Higher!” he commanded them. Meanwhile, on the other side of the room, Clark started telling everyone that he is a bowler and would not stop talking while Paul was trying to start the lesson. As the noise level increased Paul finally said “Now you know what it is like at our house each day.” which brought a lot of laughter. After the papers were distributed and Phil and Clark seated Paul regained control.

Finally he came to the end of his lesson taken mostly from Matthew and Luke in the New Testament. After he quoted the verse “And knew her not till she had brought forth her firstborn son and he called his name JESUS.” (Matthew 1:25 KJV) Paul concluded with “And so you can see Joseph did not have sexual relations until…” at which point Clark blurted out “Bleeech!” There was renewed laughter. It was a good thing we were at the end of class.

Cleaning up Christmas

2011-01-05T21:58:00.000-08:00

At our house we put up Christmas decorations the day after Thanksgiving and take them down on January1 but this year we broke with tradition and went to a late breakfast on the 1st with most of our family and then there were football games for the majority of the family in the afternoon and evening. Phil loves to hear me say “Football is boring.” and has me repeat it often so he can laugh and I can continue to sit in the front room and read all by myself. So decorations came down on Monday, January 3.I often wonder how many decorations I would put up if I didn’t have so much help. We pushed to get finished by 2:00 so we could go to the theater with our gift tickets to see the 3rd Narnia movie, The Voyage of the Dawn Treader, in digital 3D. We all liked it.

"Dad is Sooo Annoying"

2010-12-29T10:55:00.000-08:00

That’s what Clark informed me this morning as I sat at the computer. Annoying?? That’s an interesting word for him to use. I don’t think I have ever heard him say it. Usually it is “Dad is jumping up and down mad” which interpreted means “He is telling me to walk on the treadmill and I don’t want to. It makes me dizzy.” He didn’t come to the right person to tell me dad was annoying. He was hoping to get out of exercising. “Okay, Clark, you have a choice. You can either go out with us when we go for our walk/run or you can go on the treadmill.” I can now hear him on the treadmill.

Birthday in December

2010-12-26T20:22:00.000-08:00

“I’m so excited for my birthday!” Clark reminded us repeatedly in the days leading up to his big day. Family was invited to the party (nine were not able to attend) as well as four other long-time family friends. He requested hamburgers, chips, pop and mud pie (the long-standing favorite clown cake has been replaced—at least for now). Part way through the party Clark’s speech became slightly slurred and he felt dizzy. He periodically has these spells—like he has overdosed on medication. Notice his eyes in some of the pictures. Despite not feeling well he was still able to enjoy being the center of attention for a day.

A Magical Day

2010-12-22T05:45:00.000-08:00

A trip to the Alpine Bavarian village of Leavenworth on The Snow Train earlier this month was scripted perfectly. The five of us (Clark in particular was happy to be included in this excursion) arose very early for a Saturday to be downtown at the train station by 7:30. We boarded, found our seats and waited for departure time at 8:30. Before our world started changing color we made two stops, picking up more passengers, ate a box breakfast and were entertained by a magician and a variety of singers and musicians who passed through our car. Then began the slow climb to over 4,000 feet with increasing snow flurries coloring the landscape white. By the time we disembarked at Leavenworth it was a winter wonderland with carolers caroling and chestnuts roasting and snow quickly piling up on our heads. There was a festive mood as we wandered through shops, sampled chestnuts, listened to music, ate Wiener schnitzel and red cabbage at Café Christa (except Clark and Phil who wanted hamburgers and fries) and watched the snowflakes fall all afternoon. At 4:45 we gathered with thousands in the town square to listen to Christmas songs (not Santa songs), to unite in prayer and to watch Christmas lights come on along store fronts and in the trees. It was like a Currier and Ives Christmas card day and we enjoyed it as a family in a peaceful, white world.

Back at the train station.

The Bowling Christmas Party

2010-12-19T07:23:00.000-08:00

Yesterday was the annual Christmas party at the bowling alley after they had bowled three games. Paul and I took Clark and Phil so I went inside to watch them bowl. Phil is exuberant (joyously unrestrained and enthusiastic according to Webster—a perfect description) in his approach and then in releasing the ball with speed and power. Clark, on the other hand, walks to the line, plants his feet, and throws the ball, also with power. As I watched them I thought about the importance of exercise for them with the added bonus of participating with peers. I looked around and realized they are not the youngest nor the oldest. They are not the best bowlers nor are they the worse. They are inconsistent (bowling 60 one game and 126 the next) but so are most of the others. And they are as happy with the 60 game as they are with the 126 game. They don’t know what perfection in bowling is nor do they care. They have learned about taking turns, cheering others on, taking care of their possessions (their own bowling balls and shoes which were gifts at Christmas a few years ago), and paying $5 each week with their own money. What a great place for them to be each Saturday morning from August to February.

What party with pizza, salad and cake would not be a success? Add a visit from Santa and a gift and it can’t be beat.

Special Musical Number

2010-12-05T20:27:00.000-08:00

A men’s chorus sang a special musical number in church last week. And the conductor was none other than Phil. I watched the men as they walked up to the choir seats, many with smiles on their faces, with Phil leading the way. As soon as they all assembled in front of the congregation, Phil turned his head, checking to see if anyone else was coming, and then he signaled for them to sit down. And they did. Then he paused. On signal he had them stand up. And they did. Then he threw his arms open wide and on the down beat they began “We Thank Thee, O God, for a Prophet” a cappella. Phil had been talking about this day all week—the day the men would sing and he would conduct. I noticed before they went up to sing that Phil had turned to the right page in the hymnal and had his baton out. Phil is famous for the unexpected but he didn’t turn and bow at the conclusion. Paul thought he might. If Paul were a nail biter he would not have had any fingernails. Compliments came as I left to go to Sunday School. I smiled as I thought of this community who has helped to give Phil his confidence, opportunities to participate and a sense of belonging.

Where Is the Soap?

2010-11-24T22:22:00.000-08:00

Yesterday I went into what we call the “boys’ bathroom”. The shower door was open so I could see there was no soap in the soap dish—bottles of shampoo, one for each, but no soap. I would get to the bottom of this I determined. “Clark, when you take a shower each morning, what do you use to wash yourself with?” “Water.” “Water? How long has this been going on?” my mind yelled, not in anger but in disbelief. I distinctly remember teaching them to bathe with soap. “Philip, when you take a shower, what do you use to wash yourself with?” “Shampoo.” Well, at least that was soap. I couldn’t believe it. When did they stop using hand soap? I felt like a negligent mother who hadn’t noticed something so simple and basic like not using soap when they showered. Of course I haven’t personally supervised showering since they got old enough to start shaving but Paul has. Where else have I failed and when will I notice? This morning a smiling Clark came to me with his hand extended and in his palm was a bar of soap. It is a good thing that it is not too late to make a change. I just need to remember to check the soap dish in the “boys’ bathroom” periodically.

"A Present for Me?"

2010-11-14T18:25:00.001-08:00

A week ago Paul and I were in Las Vegas for my nephew’s wedding. In the days leading up to our departure Clark was a wreck. “I go with you please.” “No, Clark, just Dad and I are going.” “Please. I’ll be good. I’ll be nice. You’re lucky you get to go.” The frequency of this conversation increased in number as the day of departure approached. Finally we were in bed, late, with the alarm set for 3:30 a.m. so we could make a 6:00 a.m. flight. Under the door a sheet of paper appeared. This was Clark’s way of apologizing for getting upset because he couldn’t go.

We called home a few times to make sure all was well. “A present for me?” Clark asked. “You’ll have to wait and see.” I told him. When we arrived home it was one of the first questions both Clark and Phil asked. Since this wasn’t a long trip we actually hadn’t bought anything but of course I didn’t tell them that. I had leftover Halloween candy they didn’t know about that would please them as much as anything so I put together two bundles of tootsie rolls. When Clark saw his bundle his face lit up “Thank you Mom.” and with that he gave me a big hug and then removed one and gave it to me before he even ate one himself.

We arrived home late Monday night and then we were leaving Wednesday. I was lecturing on fragile X at Centralia Community College Wednesday night and then we were spending the night in Olympia at our daughter’s. All day Tuesday requests to go with us came from Clark. The conversation sounded much the same as it had the previous week. “No Clark. We’ll only be gone overnight.” While we were reading in bed Tuesday night Clark came in and started dusting our bedroom as he talked about how nice he is. The next morning before we left he was in our room dusting again and this time vacuuming as well. Finally my heart was softened and I gave in. “Okay Clark you can go with us but you have to shower and pack and be ready to go in 30 minutes.” And he was. We had a discussion about appropriate behavior at the lecture since he would see pictures of him (as well as Phil) and would hear me talk about him. He was amazing. He sat on the front row by himself for two hours (Paul was on the back row) with his baseball hat on and his hands clasped together. It was definitely the right thing to do—to take him with us. We celebrated after with ice cream at McDonalds. This is his thank you note for letting him go with us.

Instructions That Came with the Bread Maker

2010-11-04T17:46:00.000-07:00

1. Plug in the bread maker.
2. Pour in the ingredients.
3. Choose setting.
4. Pull the machine close to the edge of the counter.
5. Push start and let the fun begin.

A Sweet Thank You

2010-11-02T18:31:00.000-07:00

Phil came into the study where I was at the computer. He was laughing excitedly as he pasted something on my back and then ran out. I reached back and peeled off an envelope.
"What is the thank you for?" I asked the still excited Phil who had reappeared at the door.

"For cutting my hair."

I told him that was one of the sweetest thank yous I had ever received. It brightened my day.

(Sondays is Sonny, a name I call Phil.)

Phil's In His Uniform

2010-10-27T23:55:00.000-07:00

Therefore, it must be Wednesday. One of the major chores on Wednesday at our house is cleaning bathrooms. Phil is responsible for the boys’ bathroom—toilet, tub, sink, mirror and floor. I have learned personally on numerous occasions that it is best not to clean bathrooms in anything you might want to wear out in public again; therefore, training, which included months of reminders, began early for Clark and Phil. “Some of the cleaning products we use in the bathroom contain bleach. Do you know what bleach is? It makes marks on your clothes that can’t be washed out. Do you want permanent marks on your clothing?” Phil caught on and adopted a uniform—a worn out shirt and green shorts he did not want to wear out in public ever. Notice the decorative marks on the front of his shorts. He, too, has learned by experience.

On Going to the Dentist

2010-10-24T21:46:00.000-07:00

I came across this entry in one of my journals.

"I was up early so this afternoon I took a short nap. I was nudged out of drowsiness.

'Cherlyn’s gone.' Clark said.

'I know. She’s gone to the dentist.' I told him.

'You didn’t take her!' he said with urgency in his voice (and I might add with anxiety written all over his face). I was awake now and laughing.

'You’re so cute Clark.'

He smiled. How innocent and sweet. I take him to the dentist, why wouldn’t I take her (his younger sister who has had a driver's license for ten years)."

The New Shirt

2010-10-21T14:27:00.000-07:00

“Phil—you have been wearing that shirt for three weeks now, ever since your birthday when your brother gave it to you as a gift. Take it off!!! I’ll wash it.”

Moaning sounds rumbled from deep within him as he stood in the doorway glaring at me like I had asked him to relinquish his shirt forever…. “Nooooo!”

“Phil—if you take it off now I’ll wash it and you’ll have it fresh and clean to wear tomorrow.”

More moaning and then a smile crept across his face as he turned to go to his bedroom “Okay, but don’t shrink it.”

Sound advice to someone who must have done it to one of his shirts sometime in the past.

Amazing!

2010-10-16T16:37:00.000-07:00

In September Phil and Clark came home from their weekly bowling with envelopes the size of our kitchen window which had printed on them “Special Olympics Washington BOWL-A-THON”. I always forget about these until they are brought home one random day in the fall of each year but I do recognize and remember when they walk through the door with something large and white. I really do not like soliciting for money—even if it is for a good cause. I always envision spending hours, bundled up in our Gortex coats, rain dripping off us and the envelope, going from house to house trying to find people at home but such was not the case. Phil just right out said “I’m not going. I don’t feel like it.” Clark, on the other hand, is another story altogether. One afternoon I wondered where Clark was; I had seen him outside earlier with his coat on. Sometime later he walked in the house with money and signatures on his envelope. And today he found the final neighbor at home, filled out (well, I actually had to do it for him) the last line, sealed the envelope with $115.67 inside and next Saturday he will hand it over to his coach. I admit to feeling prideful. Way to go Clark! A year from now I will have forgotten and this scenario will be repeated and probably with little variation.

Thank You Mr Welk

2010-10-10T22:27:00.001-07:00

It was a busy day yesterday with getting up very, very early and then later a long, long nap to make up for the very, very short night while Clark and Phil were at Special Olympics bowling. Then it was time for two granddaughters to be picked up so they could spend the night while their parents are away on a trip. For the past couple of weeks we have had an incredible infestation of fruit flies (an overt invitation from the overly ripe tomatoes from our garden and two boxes of apples from our next-door neighbors) so I could no longer procrastinate making applesauce and finishing up the tomatoes. Three of us, no--make that four, worked for over an hour and got nine quarts in the canner. That’s pretty fast work. The fourth was one of the granddaughters who wanted to help from atop a stool. It was her job to turn the apples who were bathing contentedly in the kitchen sink. While we were sweating away in 100% humidity with windows steamed we could hear strains of Tea for Two coming from the TV and laughtercoming from Phil. He was watching, and conducting, and obviously enjoying, The Lawrence Welk Show. According to Wikipedia The Lawrence Welk Show ran from 1955-1982. I remember watching it as a little girl and particularly liking the Lennon Sisters because Janet, the youngest, was my age. I was transported back in time as I listened and remembered a time when I was a young child and my parents were alive. But something else happened—I felt a connection with my Grandmother Fetzer who lived from 1893-1992. In the last years of her life she was blind, very hard of hearing, mentally alert, still lived in her home of 50 years, and watched The Lawrence Welk Show every Saturday night. I felt a rush of gratitude for an upbeat show that brought her happiness and brought us together one Saturday night in 2010 while I stood at the kitchen counter making applesauce.

To Anyone Who Has Ever Been Nice to Clark and Phil

2010-10-08T21:49:00.000-07:00

Thank you. My heart is always touched when a stranger meets Clark and Phil and treats them as they would anyone else. Such was the case yesterday. We are going to have some of the cracks in the sidewalk along the west side of our house fixed. Most of the cracks we could live with but there are two areas which definitely need repair. Paul called three companies to come, inspect, and give us an estimate. Yesterday it was Robbins and Co. The consultant who came told us he had called the previous day to confirm the appointment and talked to a very friendly person (it could have been either Clark or Phil). David, the consultant, greeted Paul and then Clark and Phil and gave each of them his card. Phil promptly pulled out his wallet and slipped the card in with his other treasures which include current and expired library cards, four identification cards (some with long outdated information), the souvenir room key from an Alaskan cruise we took three years ago, a Sam Goody gift card with less than a dollar on it (Is it even still in business?), three airline cards plus one that has embossed “your name here,” a picture of someone who looks vaguely familiar and more money than I carry in my own wallet. And now he has a new card from a company we may or may not use. It is time to see if I can talk him into cleaning out his wallet. I have my doubts.

A Favorite Time of the Day

2010-10-05T20:39:00.000-07:00

Bedtime stories have turned into 45 minutes of TV in the evenings we are all at home. We have watched all episodes of Father Dowling, Columbo, Monk, Good Neighbors, Murder, She Wrote, Doc, half of the episodes of The Waltons, many episodes of The Bill Cosby Show and right now we are watching short movies on artists, musicians and scientists. It is one of my favorite times of the day when we lounge around the TV together eating popcorn or applesauce and watching something we all enjoy. It is almost time. Tonight we will watch Leonardo: A Dream of Flight. Sunday we watched conference.

Phil leading the Tabernacle Choir

Every once in a while Clark asks me if his eyes are open or if his eyes are

okay. Sunday was one of those days when he asked over and over. “Yes Clark, your eyes are fine.” I wonder what is going on? What is he seeing? What can't he tell me because he doesn't know how to explain it? He finally asked me about eye drops and left to find some, returning with nose spray and eye drops. I told him what the nose spray was and then put drops in his eye. Later he told me Heavenly Father gave him a blessing and his eye is getting better. He has not mentioned his eye since then.

It Was a Happy Birthday

2010-09-29T06:06:00.000-07:00

It was a wonderful day yesterday—Phil’s 34th birthday—with a family party starting at 6:00. Unlike last year’s party with all of us here we were minus two families who would have added nine to our group of nine. Most birthday requests are predictable but this year Phil broke with tradition (tacos and a heart cake) and asked for hamburgers and mud pie with his name spelled out in M&M peanuts. His sister made the mud pie which was, of course, a huge success. Candle decoration was provided by the two attendent nieces. Clark donned his green apron and did the barbecuing. His diligence produced perfectly cooked burgers which we raved about. After dinner Phil brought the presents to the table. He received shirts and shorts (which he wears all year regardless of the weather), a DVD (The Prince of Egypt) and a can of cashews and a 2-liter bottle of diet Sierra Mist from Clark. As soon as the wrapping paper was gathered and placed in recycling he went upstairs to put gifts away (that is tradition). Phil with two of his nieces

From my 1987 journal—

"My Phil-Bill is now 11. He chose tacos and a bear cake. After he opened his presents he disappeared. I found him in his room eating his peanuts, listening to his new tape. He was all by himself so I sat on the floor by him while we sang along and he tried on some new socks. He also had his new tape holder and VCR movie which Brian (a friend) gave him."

Mister Rogers Is Back

2010-09-20T19:00:00.000-07:00

Or at least I thought so. Phil was watching The Price Is Right with Drew Carey who has lost weight. I was upstairs when Phil appeared and excitedly told me to come downstairs and see. So I did and he has—80 pounds. Anyway, after the show was over last Friday Phil turned to PBS and we both heard.

It's a beautiful day in this neighborhood,

A beautiful day for a neighbor,

Would you be mine?

Could you be mine?

It's a neighborly day in this beautywood,

A neighborly day for a beauty,

Would you be mine?

Could you be mine?

I have always wanted to have a neighbor just like you,

I've always wanted to live in a neighborhood with you.

So let's make the most of this beautiful day,

Since we're together, we might as well say,

Would you be mine?

Could you be mine?

Won't you be my neighbor?

Won't you please,

Please won't you be my neighbor?

Yes, we would love to be his neighbor. Phil clapped and cheered—Mister Rogers was back after a year-long hiatus. I clapped and cheered. Then I looked at the KCTS 9 Viewer Guide and Mister Rogers is on Fridays only. Phil didn’t seem to mind when I told him. He is just plain happy to see him again.

The Return

2010-09-17T08:08:00.001-07:00

After being out of the country for ten days I am feeling overwhelmed by all that did not come to a standstill while we were gone. It has been repeated often—the time you need a vacation is when you’ve just returned from one. What you need is a week of no outside responsibilities, just being at home to attend to the accumulation and the most important thing—paying attention to neglected children (two sisters manned the homefront while we were gone). We walked in the door with suitcases, bags and coats and were greeted by a clean house and two happy sons. Clark showed his excitement by giving numerous hugs and lots of “I love you” and following us closely from room to room. I did manage one hug from Phil and could tell by his “Hello Sweetness”, delivered with a sweet smile, that he was also glad to have us home. As we walked upstairs and to our bedroom to start the process of unpacking and putting away I could see vacuum marks in the carpet. Our bed was made (which I would expect) but when we pulled back the rumpled duvet and top sheet we saw a fitted sheet that barely clung to the corners because under it was our blanket. So the line up went like this—mattress, blanket, fitted sheet, top sheet, duvet. We laughed as we scratched our heads. Here is what happened. After the bed had been stripped, sheets and pillowcases washed, Phil was put in charge of making our bed. He is diligent in making his own bed daily, changing his sheets every Monday and putting them back on when they have been cleaned BUT he has a twin bed and is not used to making a queen-size bed all by himself. We were clearly touched by his effort and praised him for his work (after we altered the layers and smoothed out the wrinkles when he was not looking). It was great to get away for a while but even greater to get home.
This is actually a picture of Clark's work at an earlier date. In the excitement of being home and remaking the bed that Phil made we failed to take a picture.

Annual Fragile X Picnic

2010-09-01T14:57:00.000-07:00

I’ve been thinking a lot about the annual state fragile X picnic which was held on Saturday. With about 40 people who came I would consider it a success. One family (grandmother, daughter and her two sons, one of whom is affected) traveled three hours to associate with other fragile X families. I met families who have never come to anything but now feel a need to connect with others who understand what they are dealing with. Just as in the general population there is a wide range of disabilities (and abilities) with those who have fragile X. Yesterday we had verbal and nonverbal boys. Come to think of it there were only boys (and men) with fragile X at the picnic. I know families who have daughters with fragile X but they didn’t come. Many who came were anxious and showed their anxiety in different ways. One had his baseball hat pulled down low while he sat alone and silent in a chair, a nine-year old started crying as soon as he saw the resident big, black dog and cried for most of the two hours he and his family were there. Another hid behind his mother and ate at a distance from most of the attendees. Phil was his normal, noisy self, laughing a lot and thoroughly enjoying the picnic while eating more than his share. Clark was talkative and more than happy to go over the high points of the state softball tournament where their team took the silver.

A Busy Week

2010-08-23T21:55:00.000-07:00

It has been quite a week for Clark and Phil. It was time to get out our (Fragile X Association of Washington State) semi-annual newsletter. Getting over 200 newsletters in the mail shouldn’t take too long. Wrong! Spread out over four days, this project took longer than expected but not as long as it would have if it hadn’t been for Clark and Phil. Clark especially has the patience to sit for hours putting on return labels, stamps, and address labels. Then there is the stuffing of the envelopes. No one wants to lick the flap so out come the glue sticks. Phil makes one swipe with the glue stick and then folds over the flap. Clark on the other hand, because of his perseveration, goes back and forth with the glue stick five times. I counted. We are finished now and all newsletters have been mailed.

A friend of ours broke her leg in two places so while she was in a rehab facility Clark and Phil helped three others mow and weed whack her yard. It will need to be redone before she returns home in a month or two.

It was also the state Special Olympics softball tournament on Saturday. Clark and Phil’s team qualified for state a couple of weeks ago. I’m not sure they have ever played on the state level. Saturday was a perfect day, 70 degrees, for sitting outside and cheering on The Screaming Eagles for two games. They won the first game. Then came the second game a few hours later. Where had those giants come from who won their first game 18-0, who knew how to connect with almost any pitched ball and could throw the ball to first base before the cheering section could even open their mouths to tell the batter “good hit.” The other team won 10-2 and I am happy to report Phil drove in the two runs for our team. Win or lose “the boys” had a great time in playing and a great time in the retelling.

Morningside Farm

2010-08-15T21:50:00.000-07:00

We were up early for a Saturday, 6:00 a.m., so we could meet others at 7:00 and carpool to Vashon Island where we were doing a service project at Morningside Farm.

“Morningside Farm is 105 acres of woods on Vashon Island. Just a short ferry ride from three points in the Puget Sound area, it is a peaceful place to get away from busy life. Bridges, a Gazebo and benches are here for reflection or viewing deer feeding in the pastures. Camping areas are available in the meadows and in the woods. There are 2 dormitories on site... The manor, complete with kitchen, sleeps 22; it includes an indoor pool. An apartment, which sleeps 6, is also available, with the Manor or separately. Many points offer views of the Sound, Quartermaster Bay and Mt. Rainier. Another gem of our property is the beach-front.” (“About Morningside Farm” on the web)

It was a beautifully warm day, perfect for standing on the deck of the ferry going to and coming from Vashon. Then there was the 25 minute drive south to the farm where we received our assignments—weed whacking the orchard and cutting up tree trunks and stacking the wood for burning. Clark was hoping to be able to chop wood so he went with that crew and Phil was hoping to use a weed whacker and went with that crew. A chain saw was used with the wood so Clark was not able to use an ax; he helped pick up and stack the wood. There were only so many weed whackers so Phil’s job was to assist by picking up and stacking debris. He loved using the pruners. We arrived home at 2:00 with Phil proclaiming “That was fun!” which he repeated many times throughout the day.

Four-wheeling

2010-08-13T04:12:00.000-07:00

Our family vacation in June included two four-wheeling excursions for Paul, his brother Uncle Tommy (the owner of the four-wheelers), Clark and Phil. The first excursion for an entire afternoon was to the hills by Menan. They came back dirty, happy, and talkative “That was FUN!” Both Clark and Phil had an opportunity to drive but most of the time they were in back of someone. The next day “the boys” went four-wheeling again while “the girls” went shopping for Father’s Day gifts. I got a call from Phil while I was in a store. He wanted me to guess where they were. Of course I knew but I guessed MacDonalds. “No,” Phil said with an indignant laugh “on top of a mountain.”

The Middle of the Night

2010-08-07T04:36:00.000-07:00

There was no particular incident today that motivated this post. It was a relatively quiet day. Phil vacuumed the upstairs and down the stairs and Clark vacuumed the entire downstairs. Then Phil went out to mow some spots he missed yesterday while Clark went with Paul to see an elderly friend of ours who has always loved gardening but can no longer do much. Paul and Clark mowed his lawn, did a little weeding and then stayed to talk. He is 88, a widower, and life is definitely winding down. They go to his house two or three times a month.

4:15 a.m. We all went to bed at a decent time. I awoke at 2:30 and instead of tossing and turning I came to my desk. Soon Phil was at the door of the study “What are you doing Mom?” I told him I couldn’t sleep and he told me he couldn’t either. Coughing awoke Paul so he joined us in the study and then in came Clark. As Paul was putting on some quiet music he told everyone it was not talking time. Clark has been known to say “I’m not talking to you; I’m talking to Mom.” Phil was carrying around a shower radio to hear what the weather will be today. Now that he knows I think he has gone back to bed. Clark just left the study and returned with lather on his face. He had shaved and will need some tidying up. He hopes to be able to run some errands tomorrow with Paul and I hope to soon follow Phil’s example and go back to bed.

Our Anniversary

2010-08-01T23:00:00.000-07:00

It was our wedding anniversary yesterday and we celebrated by going to a full day of softball and time out at noon for lunch at Taco Bell. It was the regional softball tournament for Clark and Phil. We arrived at 8:30 and left at 4:30 and were thrilled by three wins which means they will move on to state in three weeks. I don’t remember this ever happening for them but am not betting on it. If they ever went to state it was so long ago none of us can remember. I do remember, however, what happened last year at the regional tournament. Paul and I left for lunch and when we returned to the games and to our Coleman camping chairs which we had left set up this is what we found.

We never did find out who they were, two from another team, but we let them enjoy the seats until they were rested and ready to move on.

The End of a Day

2010-07-28T22:27:00.000-07:00

It is the end of a day—9:30 to be exact. Four out of five are either in bed or getting ready for bed. It is earlier than normal but tomorrow will begin at 5:30 a.m. for two of them. We ate dinner at 6:00 on the patio which is on the east side of the house so it is shaded and comfortably warm this time of year. Breakfasts together at our house are sporadic, lunch together is rare but at dinnertime we are almost always together. Tonight was “clean out the fridge night”. This occurs about once a week when there is an accumulation of a little bit of this and a little bit of that in the fridge. The fridge looks so much better now and everyone enjoyed the meal which consisted of pansit, noodle and spinach casserole, green beans, salad for one, cottage cheese with pineapple, sliced and toasted roll with canned chicken and mayonnaise on top. I am glad my family is easy to please. I assembled the dinner while Cherlyn set, Phil cleared, Paul did the dishes and Clark will unload the dishwasher tomorrow morning. It is always a combined effort. Most evenings about 8:30 we eat popcorn and watch a 45-minute program (recorded without commercials) with three on one couch and two on the other. It is a relaxing, peaceful, enjoyable time of the day that I always look forward to. For the past few months we have been watching Doc with Billy Ray Cyrus. When we were given the complete three seasons as a gift I remember saying “You can watch these when I am gone in the evening.” But then I tried one episode and became a fan. I will be sad when we come to the end. By next year, though, we will have forgotten much and can watch again.

Clark invited me to lunch today so I drove and he treated me to a hamburger at a new “Burgers and Shakes” place about three miles from our house. When we came home Clark complained of a sore throat so I gave him some medicine and told him to lie down on the coach. When he actually obeyed, I knew for sure he was not feeling very well. He even fell asleep, putting his head on my shoulder, during Doc. I am the mother of a young child in an adult body and I still worry and check on him.

Phil asked me to play The Price Is Right game someone gave him as a gift. It is an electronic game you connect to the TV so it has the music and an announcer. “Do you know who that is?” Phil asked me. I had no clue. Then he told me. Of course he would know since The Price Is Right is one of his very favorite shows. Fortunately he was ready to quit after about 15 minutes. Then he got out a 300-piece puzzle—Pinocchio. “Come help me.” he said as he spread pieces all over the kitchen table. So I did. I like puzzles. Time for the puzzle will be grabbed in snatches so it will take a day or two to finish. Then we will leave it on the table to feel (I love to run my hand over a finished puzzle and have noticed other family members doing the same thing) and admire.

It has been a good day. The house is quiet and I will get in some reading time as I always do when I finally go to bed.

"Beep, beep"

2010-07-27T15:47:00.000-07:00

I came across a journal entry this morning from 1988.

Last night daughter #2 fell asleep before daughter #1. I went in to their bedroom to talk to daughter #1. Phil (who was 11 at the time) came in and stood by his sleeping sister. He looked down at her (he didn't know I was watching), smoothed her hair, pulled up her quilt and tucked it softly under her chin. He looked at her so sweetly and then bent down and gave her a kiss on the cheek. He then looked over at me and smiled angelically. Then he tweaked her nose softly, said "beep, beep" and went out of the room. I would love to have had a video camera. It was wonderfully perfect.

Here is Phil in 1988 (and his three older brothers) with his two sisters, one on each side of him.And here he is helping his sister get water.

Cookie Baking Time

2010-07-25T21:46:00.000-07:00

We had a ward picnic yesterday and I signed up to take chocolate chip cookies. I decided to make them on Saturday morning so they would be fresh when we took them to the picnic at noon. Phil got out all the ingredients as he always does (see June 4, 2009). I did the assembling except for the chocolate chips which Phil poured in while sampling. Then, of course, came more sampling (by more than one person I might add) before the dough was dropped onto cookie sheets and baked. A change has occurred in

cookie production. Clark has officially joined the team. After months of training he now does a very commendable job of getting the trays ready to put in the oven. I set the timer and am responsible for taking the cookies out of the oven. I can get easily sidetracked and cookies have been known to overstay their allotted time in the oven. Further training was required to help Clark and Phil feel some responsibility in telling me when the timer goes off when I have wandered upstairs and can’t hear it. All in all, I think we make a pretty good team.

I Stared into Eternity

2010-07-18T22:01:00.000-07:00

For the past eight days we added four people to our household—a daughter, her husband, their 18-month old son and their two-month old son. I held my two-month old grandson for hours during those eight days. One particular morning before it was time to get ready for church I held him for 30 minutes straight, staring into his eyes as he stared into mine. He seemed very content and contemplative. How could he focus on me for so long? What would he tell me if he could speak? I told him lots—about how much I loved him, in fact, how much he is loved by many people, aunts and uncles, grandparents and great grandparents, cousins. I told him about his wonderful family with caring parents and a big brother. He couldn’t understand the words but he could sense the love, peace and security. When he would fuss while my daughter and I were making freezer jam Clark would scoop him up. He would walk around the downstairs

talking to him in a soothing voice or he would sit in the rocking chair, rocking back and forth. He is amazingly patient. More times than not he would bring him back to us, slumped over and sound asleep. What a great uncle he is!

Where is...?

2010-07-14T12:41:00.000-07:00

Every house needs a Phil. I am reminded of that on a regular basis. This morning it was—“Where is the floor mat I put on the front lawn yesterday?” I didn’t do it, my younger daughter put it there from her car, and it was missing. “Ask Phil…” I told her “Phil knows where everything is.” She asked him but he was moping about not being able to watch TV so I went to his room to negotiate. I found these two notes taped to his door.
I knocked. No answer. I knocked again. Still no answer so I opened the door and went in

“Where is the floor mat?”

“I don’t know. It’s naptime.” He was laying on the floor listening to music and it was 10:30 a.m.

“It is not naptime. Where is the floor mat?” Silence. “Do you want to talk about not being able to watch TV?”

“Yes.”

“Since your finger is getting better you will be able to watch TV again BUT you need to help wash the car (after The Price Is Right).”

“Okay."

Phil bites his fingernails. A few days ago infection set in. One finger was swollen and red. It needed to be lanced. We tried two times. As soon as Phil would see the sterilized needle he would yank his hand and hold it tightly to his body. Once there were even tears. We were tired of fighting him and frustrated that we couldn’t overpower his will. Nothing worked. Finally it came out. “No more TV until you let us lance your finger.” So yesterday evening he stayed in his room while the family watched a movie. This morning his finger actually looked better, the swelling and redness down.

“Now where is the floor mat?” I asked him again.

“On the curb.”

And it was.

Roll Call

2010-07-07T15:40:00.001-07:00

As we were packing the van three weeks ago, early in the morning, for our trip to Idaho and Montana Phil came into the garage with a legal-size yellow notepad with a stiff cardboard back. I looked at his pad of paper with each family member’s name written on it and told him what a good job he had done. We finished packing, piled in the van and then it was time for roll call. With no silliness in his voice he called out each name and waited for each us to answer “here” when our name was called. That set the precedence for the rest of our trip. Each time we got back in the van Phil got out the notepad and took roll. I remember a couple of times when we had a few more kids living at home when we did forget someone somewhere. A roll call would have come in handy back then.

Happy 4th of July

2010-07-04T21:57:00.000-07:00

We awoke early yesterday morning so we could be at the church by 9:00 for an Independence Day celebration, the most patriotic part of our weekend. Scouts of all sizes assembled at the flag pole with an assortment of onlookers encircling them. After the flag was raised we said the Pledge of Allegiance with meaning and solemnity and were then treated to The Star-Spangled Banner sung a cappella by a young woman I did not know. Stephanie, an immigrant from a small island southeast of Africa, spoke to us about her observations of the United States, reminding us of the freedoms we enjoy in this great land. We all felt her sincerity and were uplifted by her remarks. Then we (over one hundred of us) lined up for a breakfast buffet of pancakes, sausage, strawberries, blueberries and conversation. Our family sat across the table from a single mother with two young boys who served in the Navy for three years. Clark was content to sit by us but I have no idea where Phil ate. Soon it was Phil’s favorite time—taking down chairs and tables and putting them away. After an hour most of the people were gone and tables and chairs taken down but there was one table yet with the plastic table cloth still on and a person eating while two sat across from him talking to him. Phil tried to roll the table cloth right up to his plate. He wanted to take down that table. The woman across the table got a cool, angry look on her face and said something to Phil which caused him to stop what he was doing and leave them alone. My first instinct was to go to her and explain that Phil was doing his best even though it may not have seemed like it. His judgment isn’t always the best but his heart is. I turned away and didn’t say anything. How many times during his lifetime have people been unhappy with him and said something unkind or curt because they didn't understand him, hundreds of times I am sure. Phil handled it well. He did not seem affected by her comment and walked away to help in another area.

We're Back Home

2010-06-28T22:13:00.000-07:00

We’ve been away from home for almost two weeks gathering memories from a family vacation. Paul and I had meetings at BYU-I for a few days so we headed to Idaho by van early one morning two weeks ago. While we were in Rexburg, Clark, Phil and C stayed with Uncle T and Aunt G. We had planned also to go to Utah to visit family and friends but our plans changed when we decided instead to go to West Yellowstone where we saw Beauty and the Beast at the Playmill Theatre plus three IMAX movies plus three documentaries on Yellowstone, bears and wolves. After two nights there at the Ghetto Motel which featured a bent and torn window screen, a large hole in one of the box springs, fitted sheets that had to be refitted during the night and were off again by morning it was time to move on. We spent a day in Yellowstone Park which was established by Congress as a national park and signed into law by President Ulysses S. Grant in 1872. As a result of that visitors from all over the world (more than three million last year) can enjoy the incredible diversified beauty plus the wildlife. We saw bears (black), elk and bison and grizzly bears and wolves in captivity. When we emerged from the park we found an abundance of “no vacancy” signs and had to travel 45 miles to Livingston in the dark, praying we wouldn’t hit a deer, to find an available motel. The next day we traveled home.

Clark and Phil missed two practices for Special Olympics softball last week while we were gone. This morning before Paul and I were even out of bed Clark showered and dressed, even putting on his shoes, and then came into our room with his baseball mitt. By the end of the day, though, he had had a few seizures and was not feeling well. While I am typing he is sitting beside me in a chair, asleep, while Phil is at practice.
Clark is watching me while I sort recycling and garbage in C's room.

State Track and Field Meet

2010-06-13T19:53:00.000-07:00

I couldn’t think of anywhere I would rather be and yet I haven’t mentioned anything about the state track and field meet which was a week ago yesterday. It was a practically perfect day from start to finish, a beautiful 70ish day (appreciated even more so since we had had weeks of rain)and two of our married kids and their families came to cheer their brothers on. We were up early Saturday morning so we could be at Ft. Lewis for the first event, the shot put, which both Clark and Phil participated in. They were not in the same heat and both came in 4th place whichmeant a ribbon, not a medal. And that was it for Clark. He had two events on Sunday but some years ago we stopped having them participate on Sunday. When Clark started Special Olympics about 25 years ago he was in middle school. His large team would leave Seattle by bus on Friday afternoon, stay in the barracks Friday and Saturday nights, participate in events Saturday and Sunday and return to Seattle late Sunday afternoon. Phil started a few years after Clark. We would drive down to watch them participate. After a few years they no longer went down on a bus and did not spent the night in the barracks. It was just too much for coaches and chaperones. It became the responsibility of parents or caregivers to get the athletes there each day. Since we did not feel good about Sunday participation they stopped going and only participate on Saturday. Phil had two more events on Saturday, the 200m dash and the 4x100 relay, but he only got ribbons. This is one of the few years Clark did not take medals to church the next day for show and tell. As tradition dictates we went to Taco Bell after the meet.

Broken and Broken

2010-06-08T20:17:00.000-07:00

Last Tuesday and today have been work-outside days. The other days have been called rainy days. A week ago Paul, Clark and Philip filled in a trench in our yard which they dug a few weeks earlier trying to find the broken water pipe. They were successful but it took days to find it.Paul and I had come home from a walk early one Saturday morning to a new addition in our back yard, a miniscule pond with water flowing into it. There was our first clue that something was amiss. A plumber was called and a leak detection specialist to find the route of the outside water pipe in our 35-year old house. I won’t bore you with all the details that eventually led to getting the pipe fixed but I will tell you this—there is nothing like having a broken water pipe fixed to make you appreciate hot and cold running water that easily comes out a tap in many rooms in the house. How quickly, though, you can get back to taking it for granted. As the last of the trench was getting filled in Clark reached his limit and slammed down the rake, breaking off the head. Someone else had reached his limit and informed Clark that he would have to buy a new rake.

Here is Clark in self-imposed isolation thinking about his punishment. It takes him a while to understand it is the natural consequence of his action.
After some time he emerged from the shed but was still not too happy

The Explosion

2010-06-06T22:20:00.000-07:00

We didn’t even see the build up—just the explosion. Friday night a good friend of our youngest daughter arrived at our house with three friends. They had traveled many hours to visit the city where Carly grew up and left eight years ago. We knew they were coming. We had invited them to spend the night with us when plans were in embryo and now here they were. We were gathered in the kitchen getting to know the three we had just met. Clark was clearing out the dishwasher with one of the friends who had offered to help. I was impressed. I asked Philip to go to attic and get the blow-up bed. He left and we continued talking. Five minutes later Phil burst into the kitchen with the bed and crying. I am convinced he had fallen down the stairs and is hurt. Just as I am getting up to go to him I hear a hysterical voice “Clark (he points at him) said it. (Clark is happily clearing out dishes with Tyler.) He said ‘Knock it off Philip.’ I don’t like it.” Paul, who is standing right by him, tries to touch him, to calm him, but he is in full fury and stomps off yelling about Clark who is strangely silent. I was shocked that Phil, almost always the happy one, would put on such a display in front of strangers. Usually before this happens we’ve seen a build up, some name calling, some sign, but we had not observed anything. “Welcome to our house.” I smile to our guests. What else can I do? I wish they had not had to witness this but this is life, the real thing, at our house at least a couple of times a year. Phil goes into the game room with Paul on his heels. They emerge a few minutes later, gather Clark, and go upstairs. Eventually apologies are made, happiness returns and Clark and Phil rejoin us downstairs.

It's That Time Again

2010-06-04T14:28:00.000-07:00

Today is the annual Fathers and Sons outing at the Church Ranch. I’ve been hearing “I can’t wait!” with increasing frequency these past few weeks. Golf clubs came out of Clark’s closet on Monday to decorate his bedroom floor. Phil’s hand-me-down clubs came out on Wednesday. Prayers from Clark have been offered that the rain would stay away so they could go golfing. It was not looking hopeful early this morning but as the time for the three boys plus one good friend to leave approached the rains stopped and the sky lightened. Extra clothing was packed anyway…just in case. Now it has been three hours since they left. I am sure they are on the golf course making new memories that will be talked about as soon as they get home this evening and then tomorrow and then the next day. There was the time Phil took off in the golf cart and drove out of sight, returning in a few minutes with a dent in the back bumper. We'll never know for sure what happened. The manager forgave him and didn't even charge him for the damage.The next year Phil looked for, and found, the golf cart with the dent. After golfing they will go to the Church Ranch for a hamburger dinner. Instead of spending the night as many fathers and sons will do they will return home.

These pictures are from last year’s outing.

Waving from a Distance

2010-06-01T16:24:00.001-07:00

I like those small interactions that connect an immediate or an extended neighborhood—the eye contact when passing each other on the sidewalk, the greeting, the wave, the comments, children at the same school. The proximity of our houses brings us together but that doesn’t guarantee friendship or sometimes even acknowledgement.

Recently as I was taking a walk my friendly, extended neighbor (a long block away) saw me coming, turned off the lawnmower and removed his earphones. I've known Joe and his wife for many years. If he is outside when I pass his house he smiles and steps onto the sidewalk where we share conversation. He has been retired for some time now but his wife is still working despite battling cancer. I know about their two children and grandchildren. I have learned about bits and pieces of their lives in irregular snatches. After the “how are you?”s on that particular day he asked me my son’s name “You know, the shy one.” I smiled and told him “That would be Phil.” He has seen him out taking his mandatory five-days-a-week walk. Then Joe continued “I’ve tried to get him to say hello but have had no luck. Then the other day I saw him on the other side of the street down a ways and I waved. And he waved back. Now whenever I see him I wave and he responds.” Joe was sincerely pleased with this progress with Phil.

Maybe someday Phil will even say “hello.”

I Like Working Together

2010-05-23T21:48:00.001-07:00

Once a month during the academic school year our family (the five of us) participates in a dinner and program (a different speaker each month that Paul and I arrange) for young marrieds at the University of Washington Institute of Religion. Paul and I have overall responsibility for the program. We have a committee of seven young married couples who take turns fixing a meal for 50 people, conducting the meeting and introducing the speaker, setting up and cleaning up at the end of the evening. Clark and Phil help set up tables and chairs and then put them away. They are a great help in other ways too.
When Phil thinks he has worked hard enough he plays the organ.

What Will They Do?

2010-05-18T18:46:00.000-07:00

Six years ago before grandchildren started coming family members wondered how Clark and Phil would handle newborn babies. Would they be allowed to hold them? Would they want to hold them? What if the baby cried or they got tired of holding them? I wondered too. Well, we soon found out. B & A had the first baby. When we all converged on the new parents in the hospital and the hours-old baby girl we took turns holding her, ooohing and ahhhing and declaring her the cutest grandbaby ever born, and then we heard Clark asking if he could have a turn holding the baby. The time had arrived. “Wash your hands.” “Sit down.” “Don’t stand up and start walking.” “Be careful!!!” And then the baby was handed to him while the parents hovered. That was six babies ago. Now we know how Clark will behave.

This is one of my favorite pictures of Clark. It is one innocent spirit communicating with another.

Here is Clark with #5--so carefully holding this precious baby who entered the world at 4 pounds, 13 ounces. He is the baby that Phil is looking at in the last picture.

Here is Clark with grandbaby #3.

Phil likes to hold them when they are a little bit older. Here he is with grandchild #1.

I love this picture of Phil with our first grandson. He is enjoying watching him. Another picture taken at about the same time shows Phil gently touching his small ear.