Grandson

My Grandson L and his parents were down here this weekend. They arrived late Friday evening. Saturday morning L, his parents and Grandma went to an apple farm. From the reports I hear they had a GREAT time there. Saturday evening L and Grandma went to church because Grandma had nursery. His parents went out for dinner and a movie. I got to stay home alone Saturday. It was too windy and cold Saturday for me to be out. The wind makes it hard for me to exhale. It seems that the wind always finds the exhalation value and makes me work so hard exhaling. Also with a Trache, your sinus do not warm up the air so you are putting cold air into your lungs. Something I am warned against.

Sunday morning we all went to church. In the afternoon everyone except L's mom and Uncle K. took naps. When they woke up, L and I went into the garage and got some apples. I held the bag and L. reached into the basket and put the apples in it. L. carried the heavy bag of apples to the kitchen and we peeled them and with the help of L's mom and dad cut them up. When I thought we had enough apples for one pie L. and I asked Grandma if we had enough. She took one look at the huge amount of cut up apples and said there was enough apples for two pies.

So while Grandma and L's mom finished the two pies, L, his dad and I when for a walk/run. L ran for 1 1/2 blocks and then walked the 1/2 block home. While we were out for his run his Uncle J. came to visit.

Now this morning L and Grandma will go with his parents to the Diamond Headache Clinic in Chicago. Then Grandma will come home and L will take his parents back to their home.

Now everyone has left and I am sitting here with some tea writing this and trying to keep my eyes open. L. and I watched some Thomas Train on TV this morning. When he got bored with that he told me step by step how to transfer from the recliner to my wheelchair. Then he got his large truck and we raced from the couch in the living room to my bed in the front bedroom. After we got tired of doing that we played running toy cars off the hassock. He got my grabber so I could reach the cars on the floor and pick them up. About the time we were getting tired of this it was time for L. and Grandma to leave and meet his parents.

I am just amazed at how tired this small amount of activity tired me out. I mean all I did was sit in a chair and watch TV then sit in my wheelchair and drive back and forth after L. Maybe it was the small amount of talking that actually tired me out. One thing I do know is that it isn't safe for me to try to get washed up and dressed without P's help. So I guess I will stay in my PJs.

More about Boxes

I've been thinking about worry and boxes again. Over the years, I have developed the ability to place myself in a box. I don't mean that I box everything IN or everything OUT. I mean that as situations come up, if it is something that I have control over I place it inside the box. However, if a situation comes up that I no control over I place it outside the box.

So I've worked hard at resolving things in the box. For example I've always liked to be active. However with all of my hip surgeries and hip replacements at the age of 33 I was told that I should not run. So I took up bike riding, going to the gym, and swimming as a way to be physically fit and also to reduce stress. Stress relieve and physical fitness were something I had control over.

However as my Spinal Cerebellar Degeneration progressed and I had to be in a wheelchair, I could no longer go to the gym, go swimming, and/or ride a bike. For a long time I would wash up those dishes that would not go into the dish washer and would also fold clothes. This is/was a way of keeping my trunk and arms strong. I also have modified my eating habits so that I eat a rather strict, boring diet. However, if you only sit and are not physically active you will gain weight. These again are in the box. However, my weight keeps increasing even with the strict diet. So I do what I can but I don't worry about it. I've place the weight gain outside the box.

I don't know if this is making any sense. I guess what I am trying to say is that if I can influence a situation I do with God's help. However, if it is a situation I can't influence I turn it over to God and don't worry about it. Well I try not to worry about it.

Boxes

Oh how we all like boxes. If only we could organize our live and put everything in boxes. That way we would be able to control our world. We could put all our different fears in separate boxes allowing us to have control over each fear.

However, if we controlled everything, I wonder what type of mess we would make of things. I think we would control our lives so much that they would be boring. Also if we were to put everything in our lives in a box, wouldn't we also be placing God in a box? How would we show God's greatness and glory?

In my case. If I hadn't needed both hips operated on when I was 12, I wouldn't have met those interesting and inspiring patients at the hospital in Iowa City. I would have missed out on meeting all those people up to now. People who I've talked to about how I feel God is using me because of hip surgery after surgery. Now when I am confined to a wheelchair and have a Tracheostomy and a Foley because of Spinal Cerebellar Degeneration, I would not have met people who need encouragement with their handicaps.

I doubt that at age 12 I would have wanted to live with these handicaps. Yes, I think I would have placed hip surgeries and Spinal Cerebellar Degeneration in a box and taped it shut. If I had what a boring life I might have had. What would my witness to God's greatness and glory have been?

The Day After

Wow what a busy fun weekend. We had between 5 - 11 people staying here over the weekend. However, it went well. The were all great fun to have. J. did well running the Chicago Marathon. His time was 3:18:02. Not bad for a first time.

On Saturday my brother in-law, son K. and I went to Grant Park IL to visit my cousin. K. wanted to talk to him about his offer of a job when K. returns from his mission trip to Costa Rica. We had a great time my cousins. They have a huge operation, I think they have over 10 acres of green houses. When we returned home, P. and my sister in-law had prepared a huge spaghetti supper. However, I think they prepared more then was needed because we are having spaghetti for supper tonight.

Anyway everyone was up and out of here by 5:45 Sunday morning. They all went down town Chicago to watch J. run. P. returned at 4 PM and we had a Bible Study here from 5 - 7. She said it was a lot of walking and lots of people. However, they managed to see J. a couple of times. She did say that it was more walking then she was used to.

I was the person who stayed home and kept checking the web site to tell them where J. was and how fast he was running. This information helped them know where to go next in order to cheer J. on.

Wow Friday already. Today we will be invaded by my sister, brother in-law, nephew (who is running the Chicago Marathon Sunday), and between 4 - 8 of his friends. It sounds like a fun but busy weekend. Here is the intinerary my sister came up with for the weekend.

CHICAGO MARATHON ITINERARY

FRIDAY

D. and I are leaving mid-morning. We (or I) plan on doing a bit of shopping at the Tanger Outlet Mall or at Coral Ridge Mall. We are meeting J. and his friends J., and A. in Iowa City at 1:00 pm.

J. and A. are following us to Dyer. We should arrive there around supper time. My sister in-law P. works until 7:00 pm and the plan is to have pizza ordered and picked up by the time she comes home. My brother P. has to eat on a specific schedule due to his meds and will have eaten already and probably headed to bed.

Either before pizza or after, we will get J. and A. checked into their motel. Also, J. and I will do a grocery run for the last minute stuff for Saturday’s supper.

At about 10:00 pm the rest of the contingent of friends should be arriving in Dyer. They are bringing sleeping bags and pillows and will camp out in the basement.

SATURDAY

Misc. Info: Sometime during the day, A. and A. will be arriving. They will join the group camping in the basement. E. and N. can’t make it – they have pre MCATs to take. T. and B. go to Trinity and will join us Sunday morning downtown. R. is staying with his sister in Wisconsin and will drive in on Sunday morning.

8:00 am – J., D. and I (and anyone else who is interested) leave for McCormick Place to pick up race packet. Probably taking Hwy 30 to 394 which merges into I94 north all the way up to I55 go east to hwy 41 and north to McCormick Place. (There is a shortcut using Stoney Island Avenue – but we would need directions from sister in-law P.).

Noon – Eat at McCormick Place and leave for Dyer. Need to get back to Dyer by 1:00 pm.

1:00 pm – Anyone else who is interested are taking the van south to the town of Grant Park. My cousin has a truck farm there and K. may work there until he goes to Costa Rica.

5:30 – 6:00 pm – Supper consisting of C. B's spaghetti casserole, regular spaghetti, relish tray, garlic bread and snicker bar salad. Dessert may be pie and ice cream. I picked up three pies from Pella Nursery that would need to be baked: rhubarb, Dutch blueberry, and apple.

Supper: There will be 15 for supper.

After supper, J. and J. head uptown.

SUNDAY

5:00 AM Everybody is up and almost ready to go. Have D. or D. call J. and A. to make sure they are ready.

5:30 AM Everybody is on the road to the McCormick Place.

6:30 – 7:00 Park at the McCormick Place and take the shuttle to the starting line where we somehow meet up with those not staying in Dyer.

8:00 AM – Watch the start and then take the train to one of the midpoints to watch J. When he picks up his race packet, there will be information regarding his estimated arrival times at different mile markers. During this time we can get coffee, doughnuts, hot cocoa, whatever.

Go to the race finish line and meet up with J. He gets a massage and then we go get his stuff and get something to eat. After that all the Iowa people head out on I55 and home.

A great time had by all!

Well I knew I would start feeling better just given time and prayer. My niece send me an email saying they were praying.

The pizza I made last night for supper was good. However, the recipe called for a pound of bacon and I only used a 1/2 pound of bacon. However, I was surprised at how tired I was after only 1/2 hour working at assembling the pizza. I've been tired and sleeping a lot at night and also taking naps during the day. I sure hope that isn't a sign of the Pseudomonas aeruginosa coming back. I hope I am still recovering from this past weekend.

Of course yesterday two friends from church stopped over for a visit and I know I talked too much. I know because I had to use saline in my nebulizer to get some moisture back in my lungs. However, they are used to the fact that I talk too much and just wait for me finish with the nebulizer. We always have wide ranging talks. Yesterday we talked about M. and his wife helping to make apple pies for a Christian school in Wisconsin.

P. had to be at work early this morning. And she was exhausted last night, so I get to finish assembling the Crunch Chicken Cheese casserole this after noon. That shouldn't be too much work. However, I have to make certain to get it in the oven soon enough because P. and K. have Spanish class at church tonight. It is a refresher for P. Because when she was in college she spend a summer in Mexico City. However K. needs this because he is leaving for a 7 week mission trip to Costa Rica in two weeks.

Well my sister is IMing me so I will stop now.

I am depressed today. Yesterday P. gave me a shower, made two bushel of apples into apple sauce, made supper, and after supper went to the gym, after all that did the grocery shopping. After she came home, she put all the groceries away and cleaned my Trach.

For some reason it really bothered me that I wasn't able to help P. with some of her day. In fact not only couldn't I help, I was a large part of the problem. It amazes me that P. doesn't complain more. However, if the roles were reversed, I would do the same for her. That must be the definition of love between two people. The selfless uncomplaining giving of one to the other.

Well at least I will be able to help some today. I have to make a bacon/tomato pizza for supper. It is easy to make. Micro the bacon, thinly slice the tomatoes and place on the pizza crust, crumble the bacon on top, sprinkle with cheese, and bake.

Also I just received a phone call from some friends who want to come over for a visit. I really enjoy visiting with these two old guys. We always find something to talk about even though they are the age my father would be.

Well enough of this ramble. Time to work on our family website.

The troubling thing about the weekend was how tired I was by the time we arrived. When we could get in our room at 4 PM on Friday, I had to spend a couple hours in bed. On Saturday morning, I spend time in the water park taking photos of everyone. However, once again Saturday afternoon, I was in bed for about 4 hours.

On the way home yesterday we met P's cousin for lunch. We visited with them for a couple of hours before heading home. The Gate belt worked wonders. By being strapped in the wheelchair with the belt across my chest, I didn't flop around every time we changed lanes, or turned a corner.

We got home from our Kalahari weekend at 6 PM last evening. I was so exhausted that I was asleep by 8 PM and slept until after 6 this morning. However, I had a great time this weekend with our family and my youngest sister and her family who met us there.

Now today, I am still so exhausted that I don't have the energy to wash up or clean around my Trach and change the drain sponge. So because P is at work, I just changed out of my PJ's into clothes. P's day off is tomorrow so she will help me with a shower. If I take it easy again today, I hope I will feel better tomorrow. Time will tell.

I don't feel good. My knees, hips, and elbow really hurt. My feet, calves, thighs, forearms, and hands burn and tingle. If that isn't enough I have muscle fasciculation in my calves today. Not pleasant.

I wonder if it is caused by the changing weather or because we met with Pastor P. and his wife for brunch. This past July Pastor P. was basically fired by the church we used to attend. They have been taking some time to recover and to decide what is next. We had a good time with them. However, after two hours I was exhausted and ready to go home.

Tomorrow our family will be meeting at the Kalahari Resort in the Wisconsin Dells. I hope that I start feeling better. I know I will be tired after the trip. These trips always tire me out because when traveling I flop over when the van turns corners or changes lanes. For the first time we will be using a Gate belt to help reduce this flopping over. I am interested in knowing if this also helps with the tiredness. Tired or not I am looking forward to this weekend.

It was maybe ten years ago, one Saturday I picked some rhubarb. I wanted to make a couple of rhubarb pies like my mom used to make. So I called her and asked for her rhubarb pie recipe. She responded by telling me that she had a number of good rhubarb recipes; rhubarb cake, rhubarb coffee cake, rhubarb crisp, and a couple more that I don't remember. However, no rhubarb pie recipes. The more I asked her, the more she refused to tell me about her rhubarb pie recipe.

A couple days later I received a large envelope in the mail from her. It contained all the recipe ideas she had mentioned. However, no pie recipes. Then last year one of my sisters started cleaning out some things she took home after dad died, Wouldn't you know she found recipes of mom and of Grandma. There were lots and lots of rhubarb recipes. So she emailed me a number of them and sure enough there was mom's rhubarb pie recipe.

So you ask did I ever make my rhubarb pie that day? Yes I used my wife's recipe. You may say this is a nice story but what does it have to do with a fall day when there is no fresh rhubarb. Well I will tell you. Yesterday a friend from my TRW days, 20 years ago, sent me an email saying that he had thinned out his rhubarb patch and was coming over to plant some rhubarb in our back yard. So now I have my own rhubarb and hopefully in one more year I will have enough rhubarb and won't have to bother my brothers or my other friends who have rhubarb.

Here is one of my grandma's recipes notice the baking instructions.

Rhubarb Custard Pie - One of Grandma's recipes

Filling:

1 lb rhubarb
¾ cup sugar
½ tsp cinnamon
1tbsp cornstarch
2 tbsp water

Sprinkle cut rhubarb with sugar, add cinnamon, cornstarch mixed with water, bring to boil, simmer till thick and clear.

Custard sauce:

2 cups milk
2 tbsp sugar
Pinch of salt
2 eggs
1 tsp vanilla

Crust:

1 pkg graham crackers
½ cup butter
½ cup sugar

Frost with white of egg

No further instructions.

Well I didn't make it to church yesterday. Our friend who came Saturday evening to clean my Trach stayed and visited for an hour. I really enjoyed the visit. However I was very tired yesterday morning, even after sleeping well. Well as well as I always sleep what with having to wake up in order to turn over, take meds at 1 in the morning and things like that. At least I didn't wake up at 3:00 yesterday morning as I often do and then staying awake for a hour or so. Anyway it took me a long time to take meads, have breakfast, get cleaned up and dressed.

However, my youngest son came over after church to grill chicken and made "Long Grain White Rice with Corn, Peppers and Onions" for lunch. He is on his way to Costa Rica to work with a missionary doing whatever needs doing. I will miss him because currently he stops by here for lunch during the week. That is when ever he is in the area.

My wife came back from helping our daughter in-law in the early evening yesterday. She said that she had a GREAT time with our grandson. Also that our daughter in-law was beginning to feel a little bit better. This is great news because we all are going to the Kalahari resort in the Wisconsin Dells this coming weekend. My sister and her family will be there also. I am looking forward to this. At the Kalahari everything is inside so I can roll around the water park taking as many family photos as I want. My photos aren't as good as ME's but I enjoy taking them. When I begin to feel tired, I just go back to the room to rest. We have a suite with a full kitchen and plan on taking all our own food, so we won't have the cost of going to a restaurant.

Well this is enough for today.

Monday 2006109

Well I didn't make it to church yesterday. Our friend who came Saturday evening to clean my Trach stayed and visited for an hour. I really enjoyed

Well no walk yesterday. My wife worked from 1:00 to 7:00 PM. The drywall company came in the early afternoon to remove the drywall in the basement so they can find the leak in the wall. The cement company comes Monday to repair the leak. By the time everyone had left, I was too tired to do anything except sit in my chair.

Also late yesterday morning our oldest son let us know that our daughter in-law has been suffering from a migraine since this past Wednesday. He has to be out of town this weekend so my wife just left to go to Wisconsin to help our daughter in-law by taking care of our grandson this weekend. Of course this leaves me at home alone. So late this afternoon a friend of ours is coming over to clean my Trach. Currently my wife plans on coming home Sunday.

I haven't yet figured out how I am getting to church tomorrow. I think I will call a neighbor down the block and see if they will drive me to church. I call our youngest son and he is coming after his church to make lunch. I am hoping that he will make his famous hand made hamburgers because he makes great hamburgers. We will see what he decides to do. Tonight I just have to heat up leftovers.

Sure gets difficult when you are wheelchair bound and no one is home to help.

Well I did go for a walk yesterday. It was a bit brisk outside. If you are sitting in an electric wheelchair you don't generate any heat. However, I enjoyed it. Saw a lot of airplanes overhead heading towards Midway Airport. I also saw a number of people out walking their dogs. I didn't see my neighbor Bill who lives one block over. He and I have a shared passion for gardening. He still gardens, however I can't for a number of reasons. We can't because of the associations rules and I don't have the energy. I also enjoy talking to him because he grew up in the same town as my grandfather and father and I have lived in this area for over 35 years. So we often talk about shared experiences.

I am feeling better today. The home health nurse was here this morning to change my Foley. It is a good thing that I charged my wheelchair last night. Because it looks so nice outside that after lunch I might fill an oxygen tank and go for a walk. I really like the weather during the spring and fall. It isn't so hot and humid or so cold and snowy that I can go for more walks. However, I find that I don't go on as many walks as I used to four years ago when I first got my wheelchair. Now even going around the neighborhood tires me out.

ME asked what ALS stood for. It stands for Amyotrophic lateral sclerosis. It is sometimes refered to as Lou Gehrig's desease. The life expectancy of an ALS patient averages about two to five years from the time of diagnosis.

Well yesterday afternoon a friend from church who has ALS came over. He has only had ALS for a year and already has lost a lot of ground. However we had a really good time visiting. But by the time they left, I was exhausted. It didn't help that I was having trouble breathing all day yesterday. I was so exhausted that I went to bed at 6 P.M. Then I woke up at 3 this morning. I am not certain why I woke up so early. Maybe it was because my wife had to leave for work early. By early I mean 4:45. Maybe it was because I was thinking about my friend with ALS. I really don't know. Well enough of this. Maybe I will post more later today.

I am tired today. I have been tired for the past week or so. I don't know why I am so tired. I am blaming the weather. I hope that the changing weather is what is making me so tired lately. Enough complaining for one day. I am going back to try and finish my Sudoku puzzle.