Two for Two

Earlier this week we traveled to Olympia to visit Pip and her family. We took a long walk to Capitol Lake and at the half way mark Clark had a grand mal seizure. He knows when a seizure is coming on so we are usually able to get him to the ground. Such was the case this week. It had been six months since we had taken another long walk in Olympia. Clark had a grand mal seizure then. Both times it required our son-in-law to catch a bus home and return with a car. We won’t stop taking long walks in Olympia in the future but we will certainly remember—two for two. Seizures have been a part of our lives for 35 years and I wonder if some strange movements when Clark was a baby were not seizures. He was diagnosed with epilepsy when he was almost four and has been on medication since then. Medications and the number of seizures have changed (increased) over the years. One rather dramatic event happened about ten years ago. I wrote an essay describing it.

"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.'"

Emergency Preparedness

Twice a year we refresh our 72-hour backpacks, a love/hate project. Refreshing them requires me to go to Sam’s Club in advance of the designated day for refreshing for a list of items I have finally written down on a piece of paper and put in a place where I will remember to look in six months. So last week I got out the list and took it with me when I went shopping. I was feeling quite organized as I put the items on the ping pong table. I asked, okay—ordered, Phil to bring in all the backpacks from the garage where they are hanging on hooks ready to be thrown in a car or onto a back in case of an emergency. You can almost always count on Phil to carry through with an assignment. Five of us assembled around the ping pong table to take out the old and put in the new. My job was to take the six-month old items (peanut butter, hot chocolate, packets of oatmeal, individually-wrapped beef jerky, gum, Crystal Light, etc.) and issue newly-purchased items to each person. It sounds so simple as I type this but this project has never been executed in a simple manner. Attention spans for some of us are not very long and so we tend to lose interest and wander. And it is chaotic and the table cluttered. One person can always be heard to say “Why is it I always have to do everything?” And I am not the one. Enthusiasm drains quickly and tempers flare but we can’t leave our ping pong table littered with food and other emergency items so we grit our teeth and get the job done. Just as we finished zipping up the last backpack one of us remembered that the seizure (and headache) medication had not yet been done. That too sounds simple but it is always deceiving. Six months will be here before we know it and we will have forgotten most of the negative details. Meanwhile, it is a great feeling to know that we are prepared.

A Wild and Crazy Birthday

It was Philip’s birthday last week and it was wild and crazy as usual. Why change a good thing?! Phil asked for tacos and a heart cake, chocolate with white frosting and his name spelled out in M&M peanuts. We had the entire family here—all 16 of us. We didn’t know that three of them were coming so it was a wonderful surprise. It just added to the excitement of the evening. After everyone was here and the prayer was said we consumed dozens of hard and soft shell tacos. Then there was the opening of gifts which also looked a lot like previous years—a shirt, DVDs, a microphone, money. Now for the finale, the singing of happy birthday (in opera and conducted by Phil) and the eating of cake and ice cream. Ahhh, it was another good birthday.

An Excursion with Phil

Last week I had a short appointment at the dentist so I took Phil with me. That morning a lens had fallen out of his Dollar Store sunglasses so Phil wanted to go back to buy a replacement pair, maybe even two. My appointment was under 30 minutes during which Phil sat in the waiting room probably looking at pictures in the newspaper or magazines. As we were leaving we both received a key chain light from the receptionist. Phil loves key chains and showed obvious excitement at the unexpected gift. Our next stop was the bread store where we loaded up on bread to restock a few shelves in our freezer. Then it was on to one of our favorite stores, The Dollar Store. Phil did indeed buy two pairs of sunglasses, proudly modeling each, and I bought wrapping paper. As we drove home on this ordinary fall day I became aware of the leaves that were changing color, brilliant yellow now where there had been green just a couple of weeks ago, temperature in the 60s, not too hot and not too cold, clear skies, oldies music on the radio and my very happy son with two new pairs of sunglasses sitting next to me. There was simply no room for any sad or discouraging thoughts. For that short moment in the day all seemed right with the world.

This is a picture Phil took of himself with his sunglasses over his regular glasses.

It Is Time

I awoke early this morning but we didn’t get around to breakfast until 11:30. Phil had asked the day before (as he often does) what we were having for breakfast the next day. I told him eggs, something he loves. So at 11:30 I fixed scrambled eggs. Four of us sat at the counter and ate eggs and English muffins, hot chocolate and juice. It was a filling meal. After cleanup I went to my desk to do some reading but Clark was in the study and on his agenda was talking. I would read part of a sentence and Clark would say something. I would mumble a response and go back to reading, half a sentence, until Clark would start in again. I decided I was not going to succeed in reading at the moment so I went downstairs to fill a bottle with water. There was Phil in the kitchen finishing up a sandwich for lunch. We had just eaten but that doesn’t matter. It was 12:30 and time for lunch. Then it will be time for a nap even though he slept in. Phil is very much aware of time but Clark is not. He depends on me to tell him when it is time to eat (even though he is very good about snacking on his own) or time to go to bed. They may both have fragile X and IQs about the same but they are different in so many ways. After shaking my head at Phil and reminding him that we had just eaten breakfast I went back upstairs where Clark was still in the study in talking mode. After encouraging him a number of times to go take his shower he finally left the study and I went back to reading.

A Day at The Fair

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.

"I'll miss you, Mom"

I must admit I have been somewhat discouraged and a little depressed the past day or two. Phil got laid off from his job of six hours a week at a fitness center and Clark was in the hospital for two days while Paul and I were in Mesoamerica. He wanted to go with us and would tell me numerous times a day “I’ll miss you, Mom.” We would talk about who would be here to take good care of him (his sister and two brothers who live about two miles from us). I even marked the calendar so he would know exactly how many days left until we returned. I realized he wouldn’t really understand when he saw my hand-written number on a date but I knew Cherlyn could at least say “See, they will be home in ten, five or three days.”

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.