Thursday, December 31, 2009
Monday, December 28, 2009
Friday, December 25, 2009
Monday, December 21, 2009
Saturday, December 19, 2009
Thursday, December 10, 2009
Thursday, December 3, 2009
Saturday, November 28, 2009
Five or ten years ago we began the tradition of decorating for Christmas the day after Thanksgiving and it happened yesterday. Clark and Phil started getting excited BEFORE Thanksgiving so after the okay was given they hauled down boxes from the attic and put them in the front room and piano room. We worked most of yesterday afternoon. I have to admit our front room looked like an idyllic scene with a fire in the fireplace, Christmas music playing (Josh Groban and Acapriccio), egg nog being sipped and everyone together (at least the five of us who live under one roof). But there were also outbursts of impatience and reminders not to name call. Phil was easily distracted. After five or six hours we quit for the day (for sanity’s sake) and resumed today. In the midst of it all I ask myself if it is worth it (so much decorating and staying on top of reminders to help) so, a few years ago, I wrote on one of the boxes in big letters “IT IS WORTH IT!” And now after a few hours put in today we are finished and I can say with certainty “IT IS WORTH IT!” Now we have five weeks to enjoy it.Notice who is helping and also notice who is on the couch in back of Clark. Naptime occurred during decorating.
Tuesday, November 24, 2009
I am thankful for
Btter (Brett) Tucker
Pip Henson (Hansen)
Paul W. Tucker
I am thankful for
TNT (Teen Club)
Phlip Tucker (he always misspells his name)
Cot Tucker (Colt Hansen)
Friday, November 20, 2009
“I’m not going.”
“Yes you are.”
“No I’m not.”
“You will go and that is final.”
He goes and, of course, he loves it. He can’t keep his feet still nor stifle laughter of pure pleasure and delight. When the show came to an end Phil jumped to his feet, clapping harder and louder than anyone I’ve ever heard. He enjoyed the fact that he was responsible for the standing ovation.
Yesterday I needed to pick up some items at Safeway. “Phil, I’m going to the store and you’re going with me (he had already done a number of things around the house plus watched two hours of TV).”
“I’m not going.”
“Yes you are.”
“No I’m not.”
“I know your strategy” I tell him “you want to watch TV all by yourself (Clark was going somewhere with Paul).” He laughs.
“I’m not going.”
“You are going so get your shoes on.”
He finally does and we leave for an hour of mostly fun. He is energetic, happy and helpful and occasionally over the top in his exuberance. It was senior citizen day so cookies and coffee were set out. I thought Phil was helping himself to only a cookie or two but he continued to reach into his bottomless coat pocket for more cookies as we shopped. In the car going home he reached in again and got out a cookie for me and another one for him.
Later that night while I was brushing my teeth and getting ready for bed Phil came in and said "That was fun--going to Safeway with you."
Wednesday, November 11, 2009
Tuesday, November 10, 2009
I centered myself at the window
Watching my seven-year old
Skipping and smiling, then out of sight…
I thought at the time as she skipped down the street with her pigtails bouncing how our home was the center of the universe for her. She would return just as the other five would. The time would come though when friends and outside activities would beckon. Three have left and now their new homes have become the center of the universe. For Clark and Phil our home is still the center and for Paul and me. We spent the past six days in Chicago for fragile X meetings and now we are home and centered. The first day back after being away implants within me mixed emotions. I am grateful to be home safely and with my family again and yet I am easily annoyed by so many interruptions and noise and “Stop calling me names...” and "My sweats have a hole." (Put them in the black hole normally called the laundry room.) and "I'm telling." The silence in the study is wonderful and soothes me while Cherlyn is doing dishes (I fixed dinner, Phil helped set and clear the table and Clark will unload the dishwasher). I know the TV is on because I can hear Philip whooping and hollering and I feel guilty that I’m allowing it right now but I want to be alone until Paul returns. Then it will be time for me to cut hair while we watch something together and that is always good.
Monday, November 2, 2009
Thursday, October 29, 2009
As I sat in the waiting room I could at times hear both Clark and Phil interacting with their different research assistants. Both exhibited some nervousness and yet would probably deny feeling anxious or nervous. Clark talks almost nonstop and starts with “I can run fast.” If he senses any interest he tells about the time he beat the person in the wheelchair. He has told this story (which I doubt since I never observed it) many times and realizes it usually brings a laugh. I noticed that when he repeated how fast he can run for the umpteenth time this morning the assistant starting telling Clark that he has run a few marathons. That sparked an interest in Clark and he asked a few questions before he told about Andy on his Special Olympics track and field team who has run the Boston marathon twice.
Phil’s anxiety manifested itself this way. He spent time examining a colorful toy fan while his assistant waited for him. Then he burst out in laughter which was louder than normal but which was still friendly and showed his interest in being there. Both were cooperative and especially happy when they were told they would each get paid.
Thursday, October 22, 2009
Sunday afternoon we met with four other families for our monthly dinner group. We were assigned to contribute fruit or a fruit salad. Stretching the definition somewhat we decided to take Phil’s favorite salad. On Saturday I sent him to the store, with his sister who drove, to get the ingredients. He found the items, bought them with his money and then came home to make the salad. I don’t know the name of the salad (it is more like a dessert) but in our family it is called Phil’s salad. We noticed for years that he loved this salad which usually just appeared on Thanksgiving and Christmas. After everyone would take a helping he would take the salad off the table, no seconds for anyone, and put it in the fridge so that he could enjoy it by himself the next day. A couple of years ago he started making it himself with my supervision. To Cool Whip you add pistachio pudding, crushed pineapple, Maraschino cherries, miniature marshmallows and nuts. It was a hit with our dinner group. Phil even got to take some home to eat later.
Friday, October 16, 2009
"As dusk approached in the late afternoon of a chilly November day in 1999 our family gathered in downtown Seattle to hear our youngest child perform with the Northwest Girlchoir at the lighting of the Christmas tree at Westlake Mall. Thousands pushed in to watch and listen to performers and to sing together familiar songs. As we came to the last stanza of Joy to the World, our oldest, Clark, who is affected by fragile X, had a seizure. As we laid him down on the cold cement the ripples began. Like a stone thrown into a pond the place of entry is most impacted but the ripples are felt far beyond. Music filled the sky as the Christmas tree lights came on and fireworks went off and from within our encapsulated space my husband and I could hear “I’m a doctor. I can help.” “What can I do? I’m a nurse.” and the crowd moved back as they pushed toward us. We had handled hundreds of seizures but we were touched by strangers who reached out to us.
In quiet moments as a teenager I dreamed of college, marriage and future children and thought that ripples would indeed come from my bright, beautiful, well-behaved children. A secret, that I didn’t even know, was hidden within me which would not come to light for many years. Children I dreamed of would have a 50% chance of having fragile X syndrome—inherited mental retardation. And someday that 50% would play out and I would be the mother of children with fragile X because I was born a carrier. The secret would eventually be revealed.
Dreams became reality when college graduation came and then marriage and then one by one came six separate, individual children. And the years passed and we saw different ripples that extended outward from each one. Daniel Boone, American pioneer and trailblazer, said “I can’t say I was ever lost, but I was bewildered once for three days.” Our bewilderment lasted longer than three days but slowly we received answers to what was causing the differences and then one day we were told a name we had never heard of—fragile X syndrome. We have seen the ripples move outward, ruffling the water’s surface and it has been good.
As we knelt on the ground that day in November, encircling Clark, the final words of Joy to World repeated 'And wonders of His love, and wonders of His love, and wonders, wonders, of His love.'"
Saturday, October 10, 2009
Friday, October 9, 2009
Sunday, October 4, 2009
Thursday, October 1, 2009
Friday, September 25, 2009
Excitement simmered for over a week after we decided on a day we were going to The Fair. That was two days ago. It was a practically perfect day in all respects, one to be repeated without hesitation. The morning was leisurely, enough time for exercise, breakfast and sweeping the downstairs floors so Clark could mop before we left. After an hour of travel on a warmish fall day and paying our $8 to park we (five of us) entered the Blue Gate and turned left into an exciting world of sight, sound and wonderful smells. We first went to hear Billy and the Hillbillies, we always do, but they weren’t there. We were pleasantly surprised by a family band. What a great way to start our day at The Fair, listening to the fiddle and watching a little tap dancing. Next it was on to the arena to watch Shetland ponies to Clydesdales parade right in front of us. I thought as I watched the drivers show their driving skills how different our lives are. I saw a few who looked to be about my age and wondered how much of their lives had been centered in raising and training horses with the days filling up and the years slipping by. I am glad we are all different.
Then it was on to kettle corn, a large bag to be shared as we wondered through buildings and stopped to vote for the best Grange display. We always do that, study each display to determine which one we individually want to vote for. What a lot of work goes in to each one! I never get tired of seeing how creatively an abundance of fruits, vegetables, eggs, nuts, and canned items can be displayed.
At 3:00 it was time to meet up with our youngest daughter, her husband and their eight-month old baby. I wonder when he’ll get tired of hearing how cute he is and getting lots of kisses. Now on to another tradition—the consumption of ice cream cones. Yum! Then it was on to more demonstrations of mops that will clean your floors, windows, or mirrors, pots and pans that can cook your vegetables with no water and cost only $400 at The Fair, Vita Mix that can pulverize your fruits and vegetables, seeds and all, and shammies of orange and blue that will suck a gallon of coca cola out of your carpet. We usually buy something.
To get revitalized we went back to the family band concert at 5:00. Of course, we were starving by the time the show was over so we hunted out something good to eat. Most of us settled on hamburgers with Walla Walla sweet onions and curly fries but two opted for teriyaki. After all of us were satisfied, we were ready for more demonstrations (and a few small purchases) before our finale—The Extreme Scream. This ride shoots you up 20 stories at 3 Gs and drops you at a negative 1 G. Wow! Pip and I went on The Big Sling a couple of years ago. This year we were able to talk our husbands into joining us. What a thrill and a perfect conclusion to our day at The Fair. And the bonus--Phil had not gotten lost (we have spent hours in previous years trying to find him).
Here is Phil's response to the concert.
And here is Clark's.
Saturday, September 19, 2009
We’ll get to work next week on trying to find another job for Phil. Actually, we’ll work through DVR (Division of Vocational Rehabilitation). I always start off optimistic. Phil is energetic, dependable and personable. There must be some job, somewhere, in a ten-mile radius from our house. He worked at Deseret Industries for six years but that is no longer an option since their philosophy is “Deseret Industries is not a landing place; it is a place of training and transition.”
Clark is now doing well after his two days in the hospital from complications from seizures. It is probably a good thing that we could not be reached in Guatemala since there was nothing we could have done (except worry!!!). Our five other kids rallied and stayed with Clark 24 hours a day. As soon as we arrived home we got all the details. I heard the words they were saying but it took a couple of days to digest. My appreciation for them grew as I thought about the sacrifices they made as they took good care of their brother.
Yesterday I took a friend to the hospital for a test to find out if her cancer has spread further. She is about 60 and has been widowed for ten years. She has two children. She is estranged from one and the other, who lives in another state, is angry and in denial concerning her cancer which is very painful. Oh, that puts things a little more clearly in perspective. I don’t have much to be discouraged or depressed about.
Sunday, August 30, 2009
Tuesday, August 25, 2009
Yesterday I went to see a granddaughter take a swimming lesson. The outdoor pool and constant smell of chlorine reminded me of my college years when I taught swimming. My mind wandered back many years to that small outdoor pool in a small town. I thought working at the pool was a perfect summer job. The instructors yesterday seemed to be enjoying their work. I watched mothers sitting together chatting while watching their children in the pool and toddlers who would very quickly take their older sibling’s place. We like to get together with others who understand our situation, what we are going through.
Wednesday, August 19, 2009
Sunday, August 16, 2009
Sunday, August 9, 2009
I read in the news that Eunice Kennedy Shriver is in the hospital. She is credited with starting Special Olympics back in the ‘60s. I had no idea the impact it would have on my life. The online Wikipedia says
“The first International Special Olympics Games were held in Chicago in 1968. Anne McGlone Burke, a physical education teacher with the Chicago Park District, began with the idea for a one-time Olympic-style athletic competition for people with special needs. Burke then approached Eunice Kennedy Shriver, head of the Joseph P. Kennedy Jr. Foundation, to fund the event. Shriver encouraged Burke to expand on the idea and the JPK Foundation provided a grant of $25,000. More than 1,000 athletes from across the United States and Canada participated. At the Games, Shriver announced the formation of Special Olympics. Shriver’s sister, the late Rosemary Kennedy, had an intellectual disability and is often credited as Shriver's inspiration to help grow the Special Olympics.
In June 1962, Eunice Kennedy Shriver started a day camp, known as Camp Shriver, for children with intellectual disabilities at her home in Potomac, Maryland. Using Camp Shriver as an example, Shriver promoted the concept of involvement in physical activity and competition opportunities for people with intellectual disabilities. Camp Shriver became an annual event, and the Kennedy Foundation (of which Shriver was Executive Vice President) gave grants to universities, recreation departments and community centers to hold similar camps.”
I will be forever grateful for that wonderful organization.
Monday, August 3, 2009
Saturday, August 1, 2009
Monday, July 27, 2009
Thursday, July 16, 2009
Friday, July 10, 2009
We arrived last Saturday night. After unloading the van and then going to the grocery store we took a long walk on the beach. Phil said to me “Look, no footprints.” And he was right. The beach is very wide with hardpacked sand, finer than grains of sugar, and a slope that is so gradual people were riding bicycles. At the time of our walk there was a thin sheen of water, thus no footprints. The next day he observed that footprints were following us. I thought a lot about the “no footprints” comment. How many people have lived since Adam and Eve? How many have left a record of some sort? And for those who did, what did that record say about their lives?
As I took my daily walk in our neighborhood a few weeks ago a woman crossed the sidewalk in front of me heading to her house (which is a few streets over from my house). I commented on how much the moles liked her yard. I had noticed for years that her house seemed to have more than its share of mounds in a beautifully kept lawn. We complained about those annoying critters. “By the way, I’m Molly.” she told me. I introduced myself and we continued chatting. She told me that she and her husband had lived in that house for 41 years (we have lived in ours for 34 years and yet I had never met her), had raised two children, and that he had died just a couple of months ago. A friend of mine who lives on her street told me that there were two houses next to each other where both husbands had Alzheimer’s. Often as I walked past her house I would wonder how things were going even though I did not know them but now I knew; he had died. “What a great man he was.” she said. She told me that he had been diagnosed with Alzheimer’s twenty years ago and that she had taken care of him at home until the end.
I think we all want a confirmation that what we’re doing during our lifetime is important even if it is not glamorous in the eyes of the world. We want footprints that say we were here and that our lives mattered, like Molly’s. Her actions will not be lauded, nor even known, by very many but she is a hero in my eyes. Clark and Phil are leaving footprints. I have observed their impact on our family, our neighborhood, our church community, our friends, strangers in a store, cashiers in a bank, or Special Olympics volunteers.
This vacation is almost over and I’m not ready to leave the beach and long walks on the sand.
Friday, July 3, 2009
Sara and her team (seven total) were there to learn about what to expect from individuals with fragile X since they had mostly been working with individuals with autism. For over an hour they asked the three of us specific questions about our children, what do they like to talk about, will they be comfortable going into a room without you, do they know they have a disability, etc. Their questions were good and thought provoking and allowed me the opportunity to talk specifically about two of my kids. Cathy, Jackie and I laughed and shared stories while I got to know more about their sons. I felt such a camaraderie and appreciation for them. Our children may have differences even within the fragile X spectrum but there is much that is similar. And though our children may have a disability life is good and there is joy and contentment.
Now it is time for me to go check suitcases. We are going on a short vacation which requires me to inspect items going into Clark’s and Philip’s suitcases. They tend to over pack, taking 20 pairs of underwear, ten pairs of dirty socks and every tee shirt they own whether they wear them or not. Sometimes there are a number of books (because that’s what I take) even though they can’t read. When I get through their piles will be reduced substantially.
Monday, June 29, 2009
Sunday, June 21, 2009
(Occasionally, Phil was asked to hold the ladder.)
Despite the slowdowns things moved along faster than expected. Helping to do that were three extra people for six hours on Wednesday. The core painters—Paul, Clark, Phil and son-in-law Colt—were joined by Colt’s father and two brothers. They gave an incredible gift of 18 hours! Not only did they give the gift of labor but they were cheerful and great to have around. So instead of finishing on Saturday, they finished Thursday. Paul and Clark did additional painting on trim plus a back door on Friday and Saturday. Ladders, paint cans and brushes, drop cloths and rags have been put away and now we are ready for a family party tomorrow night.
Sunday, June 14, 2009
Saturday, June 6, 2009
One day while Paul and I were working upstairs “Phil, unbeknownst to us, was downstairs making chocolate chip cookies…I am sure it had all the right ingredients, but not the right proportions.” Ten dollars worth of ingredients went into the garbage disposal while I tried to explain to Phil why we couldn’t bake the cookies. I can’t remember but I imagine I let him give this batch “a taste test” so he would understand. He has not tried doing it again and is still my assistant. It is just not as much fun to make cookies by myself.
Tuesday, June 2, 2009
Our family was at the Washington State Special Olympics track and field events at Ft. Lewis. Most there also didn’t think, or worry, about growing a garden or balancing a budget but that’s okay because the rest of us are here to help.
Clark and Phil both participated in the shot put (one of the first events on Saturday morning) and in separate relay races (the last event of the day). It didn’t matter that there were only two teams participating when Clark ran with a slight limp from a two-week old injury; he got a silver medal that he could take to church for his own personal show and tell. We all had loud cheers for Phil, the third leg of his relay team, as he rounded the corner passing four other runners and helping his team come in first. It was a great way to end a day of competition.
In between the two events we took Clark and Phil to a trailer set up by the bleachers where free eye examinations were given and free, prescription glasses for those who need them. Despite continual patience from everyone we came close to giving up on Phil. When he was told to open his eyes, his mouth opened instead and his eyes closed. He rubbed his eyes more than I’ve seen him rub them in the past year. Finally it was determined that his glasses from three years ago were still working well for him.
Wednesday, May 27, 2009
On Memorial Day we went to Olympia to visit our daughter, her husband Colt and our grandson. We walked over a mile to a restaurant and then on our return we took a detour so we could see Capitol Lake. Clark kept up. As we walked past the Capitol Building and into a residential area I turned around to see if Clark was still keeping up with the six of us. He was staggering. He was headed into a grand mal so we helped him lay down on the grass. After 15 minutes he was through with the seizure but not well enough to walk another mile. Colt ran home to get the car and returned to pick up Clark. It is interesting to me that Clark has the majority of his seizures (about eight seizure days a month) at home. Seizures have been part of the pattern of our lives since Clark was four and diagnosed with epilepsy which affects 20% of those with fragile X. Phil is not affected. Despite four different seizure medications he is not seizure free but he enjoys life and always prays fervently for help when he can tell he is going to have a seizure.
Wednesday, May 20, 2009
As a member of an advisory board, I spent this past weekend at a retreat at the University of Washington Friday Harbor Laboratories with scientists and geneticists from across the country for one of the three national Fragile X Research Centers, the University of Washington in collaboration with UC Davis M.I.N.D. Institute and Rush Medical Center in Chicago. I understood little of the scientific PowerPoint presentations made in the morning meetings. They revived a weak determination to read a short, very basic book on chemistry. My notes were mostly: look up hemi-methylated, crossover during PCR, isoforms, knock out mouse and more. The afternoon lectures were on newborn screening for fragile X, symptoms of FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome—a disorder that can affect carriers), minocycline as a promising drug for patients with Fragile X Syndrome. I could understand a lot more in the afternoon. Tiina Urv (an Estonian name) from the National Institute of Health was there to make sure that money was being used as written in the grant proposal.
I realize I am not unique when I say that I didn’t know the route my life would take as I made plans during my teenage years. Many of those plans have come true (no chemistry classes for me amongst other more significant goals like marriage and children) but I continue to be amazed at what I have learned and experienced in having two sons with fragile X.
Wednesday, May 13, 2009
Wednesday, May 6, 2009
“Dr. P. and his nurse earned their pay today when I took Clark and Phil in for physicals (Special Olympics requires one every three years). Clark did fine until he was asked to deposit a sample in a cup. He informed Jason (the nurse) he was going to call the police so Jason got me (I was in the waiting room).”
There was no success in getting a sample five years ago or yesterday. We were told that we could get a sample at home, put it in the fridge and bring it in today when my sweetheart takes Clark in to get a chest x-ray. Phil saw the successful sample later in the day and asked why there was pee in the fridge. He had his own problems five years ago at that same physical.
“Phil wanted me in there with him. When he was asked to walk on tip toes, his heels, etc. we did it together. Then Dr. P. wanted to check his eyes. ‘Open your eyes wide Phil.’ Phil opened his mouth wide and his eyes became slits. ‘This is serious, Phil. Open your eyes. Close your mouth.’ When he closed his mouth his eyes also closed. Dr. P. gave up. Phil is petrified of needles so I couldn’t imagine what he would be like when he had to have blood drawn and a tetanus shot. He wanted to hold my hand and then he was incredible. He pulled a face and jiggled his feet when he was having his blood drawn but he held his arm perfectly still. He was still for the shot. I was very proud of him.”
Even though I found this trip to the doctor hilarious, Dr. P., the nurse, and I were exhausted when the physicals were over. I was glad it would be three years before I would have a new "trip to the doctor" to write about.
Wednesday, April 29, 2009
When Clark started participating in Special Olympics about 25 years ago I would attend his meets and the tears would begin to flow. It was not because I felt sorry for the athletes but because of how hard they tried. Whether an athlete came in first or last it didn’t matter, each was a winner. Tears only come occasionally now but I do not stop being amazed at these special athletes who are not concerned about looks, clothes, breaking records, or endorsements. I have seen a young woman running the 100m and just about to cross the finish line in first place stop to help someone who fell. It cost her the race but I doubt if that ever crossed her mind. Someone fell and needed help. Another athlete at another meet was well behind all the runners when he fell. When he stood up he seemed disoriented and went back to the starting line where he began again, long after everyone in his heat had crossed the finish line. Everyone was cheering for him as he stumbled along and then he realized the cheers were for him and he smiled and continued on his way until he finished. These are the true heroes.
Clark and Phil’s main coach for all events is someone who has devoted her life to helping the handicapped. She had a group home until bad health stepped in but she has continued with Special Olympics, of course like everyone, as a volunteer. And there are other faithful volunteers who help Mary Ellen. The Special Olympics Oath is "Let me win. But if I cannot win, let me be brave in the attempt." Athletes and coaches alike are winners in my eyes.