Different from my biography that I started above, I have decided to document daily life, or Blog as
it is referred to now. Pleae scrool down toe see the Blog or
1/3/2010 Today I am beginning my blog. I really wanted to start this on January 1, however today is
January 03, 2010 and I will try to get you caught up. December 31 of 2009 we brought in the New Year with
great friends, good champagne and fun games. I got to talk to some friends that I haven’t seen it in a while,
and it was really nice. I found some friends that are those friends that are there for you when you need them
and I also realized the shallowness of some.
January 1 found me to be in a bit of a funk. I woke up with sore feet as usual but today was one of
those days where my mental pshychie is screwed also. Once in awhile, on days when my feet hurt, my
muscles are sore, my head is congested and I am generally just out of gas, it makes staying mentally strong
almost impossible. Today Shelley and her parents want all of us to go see a movie called The Grand
Canyon at the IMAX in Union Station. Though it sounds like fun, there is a pressure that I don’t feel like
dealing with. I don’t feel like starting out my year having to worry about being five minutes late, driving the
wrong direction, my truck and not being clean enough for everyone that is going, having to explain why I
might be a less than happy mood or really any other stress that comes from outside this house. Therefore, I
have now crawled back in bed and plan on spending the day here, resting, alone. It is now time to walk out
the door, I am still in bed and my six year old son, Hamilton, has come to see me and tell me that he will be
very sad if I don’t go with him. So, guess what, I am now getting up and putting close on… We are ready to
walk out the door. I have now resigned to the fact that I am going and this will be fun. My father in law gives
me great directions to Union Station, we are right on time and everything is going great. The movie ended
up being absolutely wonderful. It was all about our planet and how the resource of water is going away. It
showed Lake Powell and Lake Mead, and how the water level has dropped in half, just over the last eight
years. It was very eye opening too see how fragile the planet earth really is. We left their and went to Waldo
pizza, which was incredibly good. Thank you to mom and dad for picking up the tab. We then come home
to do nightly stuff, Lyman’s breathing treatment, brushing teeth and going to bed. I need to rest! I have not
ended the day in the same funk I started it in. However, I now realize that I am very similar to the man in the
children’s movie, UP. He spends his whole life wanting to get to Paradise Falls and finally does so, now
that his wife has passed away, he has no family left, the world is being developed for “progress” around his
house and the people from the old folk’s home are there to pick him up and take him to live in a “retirement
village”. If you wait for that perfect time to push the limits, time will pass you by.
1/6/2010 This morning I got online and found that GMAC had billed my mortgage out of our new bank
account which I just opened and it only has $200 dollars in it. Correction. It has $175 in it because of the
newly found NSF fee! I called GMAC and spoke to 3 different people. One of them was a supervisor who
had a shitty, arrogant attitude and told me that I was full of crap, basically. This conversation ending up
costing me a broken mouse. I haven't been that mad since..... well, it was years ago. Then I ended up
fighting with the kids, Shelley and you name whoever else. I bought a snow blower from a guy named Rick
who lives off of 65th street and apparently buys junk to fix it and sell it. He sold me a piece of crap snow
blower that broke as soon as I started it at home. I loaded it up and drove back to his house and asked him
to fix it. He began ranting at me and telling me that it was his responsibility and that I probably broke it. I
explained that I was simply asking him to fix the machine and that I had not showed up telling him that he
sold me a piece of shit, like I really wanted to do. He told me that he wasn't fixing it and proceeded to go to
his garage our back. I just sat on his front porch and told him that I had all day. Which in fact, I did. About 20
minutes went by and he came back around front, apologized for blowing up and told me he would fix it, just
give him an hour. 3 hours later I drove back to his house. He came back around front, as charming as
usual, and told me again, how this was not his responsibility and was just as shitty as ever. I simply
explained that I paid for a good snowblower and all I wanted was one that worked. He said he had another
one that he had been working on and he would have it done in an hour. So this time he actually called me in
an hour. He said we can work this in two ways........ I have this other snow blower that is running and you can
take it or I can sell it and get your $150 back to you. Having now been a part of several discussions with him
and seeing his charm, I wanted a resolution tonight and not a fight another day. So, I went to his house and
got the other snow blower. It worked great at his house. I got it home and started it and it worked here too.
Yeah!
1/7/2010 This morning I spent an hour getting my new wonderful snow blower started. It worked for one
pass and then the belt broke. I shot putted that bitch about 30 feet into the yard and came inside. Shelley
then spend two hours shoveling the drive. Then she had to go work on real estate stuff and me and the boys
stayed here. I had a list of things to do, but I was sore and couldn't move my left arm. I just stuck it in my
pants pocket to keep it from flopping around. The boys and I just stayed here and really did nothing. I asked
them to clean their rooms, which of course they didn't. I told them we were going to make a pizza for dinner
as a family when mom got home and I got "I'm not really in to pizza". This is when I quit asking. About 2 this
afternoon I could move my hand, but still not much arm control and definitely no fine motor in it. Shelley came
home, made the pizza her self and it was great. I had the counters cleaned off, which she appreciated and
told me so. Tonight she is showing the kids pictures of Mexico online in preparation to our vacation. I am
trying to watch Alabama beat Texas in football, but falling asleep. Now headed and into bed, the boys have
found me and crawled in. I told them we could snuggle for a bit and of course that turned into a sleep over.
Shelley, laughing, walked in the room and said, "what in the world? You all have been wanting a family sleep
over. Merrill, did you approve this craziness?" I just laughed too. So here we are at 10:30, having a sleep
over. Beautiful!
1/8/2010 Today is my birthday. A day when I tell all those other people who are celebrating, how
important their birthday is. A day that made all other of my days possible. I have about 50% of my left hand
use back and about 20% of my arm back. I don't know that I feel that fabulous? Let me get my coffee in me
and maybe it'll help. I am going celebrate it greatly and will be back here to tell what we did!
Well, today ended up being a great day. My wonderful mother in law picked me and the boys up
at 10:30 and we went to Harbor Freight. We browsed and bought some stuff, it was her first time there and
she really wanted to go. I got all sorts of stuff and then we met Doug, my father in law, and Shelley for lunch
at our favorite BBQ place, Oklahoma Joe's. This time we went to the original one at 47th (County Line) and
Mission. I got my usual Z-Man sandwich and it was awesome as expected. From there, the boys and I
came home and goofed until our next meal. Yes, it seems that birthday and holidays revolve around eating.
I always want to go to a Japanese Steakhouse and we never do, so that night we went to Nikko's in
Overland Park. We were able to get a handicap parking spot right up front, where I didn't have to get my
power chair out in the slushy mess. The food was good as usual and mostly a fun experience for the kids.
Lyman was scared of them making the big fire so the chef didn't do it, but then he asked for it several times
through the night. However, the chef told him that he missed his chance. We ate there and came home to
do Lyman's breathing treatment and settle in for the night. Tonight I am remembering a day that was good.
Shelley is thinking about tomorrow and is not real excited about tromping through the snow to show houses.
I told her to lay her clothes out ahead of time and make sure they are something cheery. If you take your
"have to" clothes, like snow boots, then you can build around that with bright and fun clothes that carry your
mood throughout the day. If you feel bummed for any reason, you have your clothes on that you wore
specifically to be bright and cheery!
1/9/2010 Today I am getting ready to go to Liberty and see my family. My side of the family and this
time I am excited to see them. I know that it is usually stressful, but this time feels different. I am in a good
place in my life and I know that what I get back from people is some of what I give out. So this time, I feel like
I have good to give and will get some good back. I am doing laundry so that we have clothes to stay the
night. Going overnight to places is sometimes a real challenge, yet a challenge we will continue to do. It
requires planning ahead and this time we were able to know in advance what our plans were. So we got up
and started going at it. Shelley is going to show houses to some people today and maybe she will sell
something. She is wearing lighter colored clothes and this real fun necklace that her mom got her for
Christmas and just walked out to show me saying "bright and cheery"! She really loves this necklace that
she got from Ranchview Floral of all places. Now days the name of the store doesn't really mean anything. It
means they do that plus other things to stay in business. I used to laugh at this sign by Springfield, MO that
says Osceola Cheese and Small Engine Repair, but really the only difference is that the person in Osceola
is being honest about what they do. We have a couple stops and then we can head to Liberty.
It is now about 1pm and we are heading out to Wal-Mart and Subway to get the kids a bite to
eat. Then arriving at Fielding and Darla's house in Liberty about 2:30, are us, Townes, Marcia and Adam,
all at the same time. Through out the night they played with the Wii, while I played Ned's Head with
Sheridan, Aaron and Hamilton. We all enjoyed the two bottles of wine I brought and other miscellaneous
booze. One of the group, who will not be identified by anything other than Aunt Drunko, embellished herself
with a bit much. We had a great night of games, fun and very little drama. Unbelievable, but we did it and
had a great time as a family. Time go away from us and we really had no idea of time until Sheridan's
boyfriend, Aaron left at midnight and we ended up in bed about 1:30am, kids and all. The boys actually
stayed up that long. I think that is the latest we have ever let them stay up (it was really an accident)! Lyman
proceeded to cough through the night enough that Shelley came down from upstairs.
1/10/2010 This morning finds me a bit tired, as the alarm on Darla's cell phone was going off in the
middle of the night. We slept on the floor in the living room and it was on the counter in the kitchen. Hamilton
and I slept on the floor and Turner and Lyman slept on the couch together. When the alarm woke me up, I
thought it was Turner's alarm and he needed to get up for something, so I was trying to get him up without
waking up Lyman. I finally woke him up and he told me that he didn't need to get up for anything. It was too
dark for a picture with my phone, but Turner and Lyman were snuggled up so close and tight on the couch, it
was a picture in my mind that I will always cherish. Turner would move a bit and adjust his arm that is around
Lyman and then Lyman would pull it up real tight so he could put his arms around it. Too damn cute! I can't
tell how good it makes me feel to see that. I didn't grow up with a real family closeness, so this to me is
showing that I am making my kids' lives better than mine. That is my whole goal. We sat around had coffee
for a bit and talked about how it was four degrees below zero outside. After getting everything packed and
ready to go home, with some help from everyone, Townes goes to start my truck and get it warmed up, but
the battery is dead. Darla called Fielding to get him back home, because he was the only one with cables.
While waiting, I decided to go look in the garage and ended up finding a set of cables. Of course, I walked
outside with them and Fielding was pulling up. That's usually how it works. Anyway, Darla comes out to start
her Expedition next to my Yukon to start it. That takes no time really, so I now shut the hood and the latch
doesn't keep it down. After 15 minutes or so of messing with it, I went inside and got Townes and he knew
how to fix it. He showed me how to use a screwdriver to move the cable and make it manually work. So
now I got the truck running, kids loaded up and heading home. Once home, Lyman is asleep in the car, so I
carried him to his bed for a nap. Hamilton and I start watching the Arizona game where they started by
scoring 14 point in the first 4 minutes against Green Bay. He asked me to make him some macaroni, so I
did. While at the stove, I heard this loud hissing sound, followed by a couple thuds. My first thought was that
there may have been an accident out in front of our house, but the street here is only 3 blocks long and
doesn't have much traffic. My next thought was that it may have been a pipe breaking, so I went to the
kitchen faucet and turned it on, only to see that my second guess was correct. I opened the door to the
garage and I could hear the water just running out somewhere like crazy. I hurriedly ran (ok, so I really can't
run anymore, but you can imagine my hobbling ass trying to move real fast) to the basement and found that a
pipe broke right where it comes from the basement to the garage. The people that owned this house before
us had a dishwasher, clothes washer and dryer hooked up in the garage, and it was one of those lines that
broke. Fortunately I know how to fix this. I tried frantically to plug the hole long enough to get to the main, but
now soaking wet in freezing temperatures, I decided to get to the main shut off and stop it. I came back
inside and immediately stripped those frozen, wet clothes off! After throwing on some dry clothes, I finished
Hamilton's macaroni and waited for Shelley to get home from her open house. Once home, I explained what
happened and proceeded to Home Depot, where I had a gift card, to get the parts needed to fix this broken
pipe. I just decided that I didn't need those hook ups anymore and would cap them off, so I got two caps and
some pipe cement. I cut both pipes off on the inside of the basement wall and capped them. Now we
needed to eat and went to Ci Ci's in Roeland park were the pizza was just OK and there was an old woman
that we were pretty sure had pooped her pants. She smelled very badly, as she stopped to talk to one of the
workers near our table. Then, while talking, she was fidgeting with her layers of clothes and raised up the
back of her shirts and she had these huge wet spots all over her but and back. I know, maybe she can't help
it, but it really made me question if I really even want to live that long. Regardless, we had a good laugh, a
good time out and thanks to our Entertainment Book we fed our family for $9. We got home, did Lyman's
treatment and got them to bed. At 9:40 I was tired and went to bed. For Real, it was 10 and I was asleep.
1/11/2010 This morning I am up at 6:30 and having coffee alone and in silence. Ahhhh. Lyman has a
doctor appointment at 1:30 to see about his cough and being tired and pale. He coughed through the night
again and it is getting to the point that is really sucks. On one had you want to throw your hands up and say
screw it, because you are tired of fighting it. On the other hand, you have seen your child fight the stupid
disease of CF everyday and now this same coughing shit since April! Hello? Can we PLEASE figure
something out? So, today is the day to see what we are going to do. If he gets admitted it may fix him with
some Vincamiacin in and IV, but they told us the Linezolid has been showing the same result when PO or
orally. So, the Bactrim nor Linezolid have solved his issues, even when given Rifampin to "supercharge" the
drugs. Now what? Well I got Lyman to school on time and told him that I will get him at noon for lunch and
then to the doctor. If you are reading this , say a prayer for our little guy.
Well, the doctors appointment went great and despite his cough and junk, his lungs are clear
and with great capacity. Shelley showed up about 10 minutes into the meeting, so just in time from work. It
didn't take but a few minutes before it was 2:45 and someone needed to get Hamilton from school. I went
out to my truck and proceeded to load my power chair in the back. As the chair reached the top of the lifted
height to get it back into my Yukon, the strap lifting it started to make a crackling sound and then...BOOM!
My chair went straight down to the ground, yet landing on it's wheels. So here I am in the Children's Mercy
parking garage wondering what to do. I decided to fish the remaining strap out and try to just tie it directly to
the chair, but BOOM again. I attempted to lift one side, to no avail. It is very heavy and thanks to my CMT, I
am no longer that strong. At this point I am worried about getting Hamilton from school, so I start
disassembling my power chair. I got the seat portion off and loaded into the front, passenger seat. Now it is
time to figure out what to do with the base that houses the wheels, batteries and motor. OK, I have it tipped
up and resting on the back bumper. Maybe I can just tie the rope to it and use the lift in/put motion to keep
tension on it while I lift it. Damn, I need an extra hand to do that. It is at this point that I decided that I had
reached my limit and struggled to muscle that damn thing into the back of the Yukon. There. It's there, my
hands are bleeding from picking that damn thing up, but I must not waste time with my issues at this point.
Hamilton is at school waiting for someone to pick him up! So I raced from CMH to Hamilton's school, calling
them along the way to update my status. Upon arriving at his school, there are virtually no other cars and he
is the last kid to be picked up. He started to give me trouble about it, but I apologized to him and showed
him my hands. That was about all it took. So the good news of the day is that Shelley is meeting with a
listing tonight to present two offers! Yeah! So the boys and I just had some leftovers for dinner and will now
do Lyman's treatment and get ready for the ending of the night.
it is referred to now. Pleae scrool down toe see the Blog or
1/3/2010 Today I am beginning my blog. I really wanted to start this on January 1, however today is
January 03, 2010 and I will try to get you caught up. December 31 of 2009 we brought in the New Year with
great friends, good champagne and fun games. I got to talk to some friends that I haven’t seen it in a while,
and it was really nice. I found some friends that are those friends that are there for you when you need them
and I also realized the shallowness of some.
January 1 found me to be in a bit of a funk. I woke up with sore feet as usual but today was one of
those days where my mental pshychie is screwed also. Once in awhile, on days when my feet hurt, my
muscles are sore, my head is congested and I am generally just out of gas, it makes staying mentally strong
almost impossible. Today Shelley and her parents want all of us to go see a movie called The Grand
Canyon at the IMAX in Union Station. Though it sounds like fun, there is a pressure that I don’t feel like
dealing with. I don’t feel like starting out my year having to worry about being five minutes late, driving the
wrong direction, my truck and not being clean enough for everyone that is going, having to explain why I
might be a less than happy mood or really any other stress that comes from outside this house. Therefore, I
have now crawled back in bed and plan on spending the day here, resting, alone. It is now time to walk out
the door, I am still in bed and my six year old son, Hamilton, has come to see me and tell me that he will be
very sad if I don’t go with him. So, guess what, I am now getting up and putting close on… We are ready to
walk out the door. I have now resigned to the fact that I am going and this will be fun. My father in law gives
me great directions to Union Station, we are right on time and everything is going great. The movie ended
up being absolutely wonderful. It was all about our planet and how the resource of water is going away. It
showed Lake Powell and Lake Mead, and how the water level has dropped in half, just over the last eight
years. It was very eye opening too see how fragile the planet earth really is. We left their and went to Waldo
pizza, which was incredibly good. Thank you to mom and dad for picking up the tab. We then come home
to do nightly stuff, Lyman’s breathing treatment, brushing teeth and going to bed. I need to rest! I have not
ended the day in the same funk I started it in. However, I now realize that I am very similar to the man in the
children’s movie, UP. He spends his whole life wanting to get to Paradise Falls and finally does so, now
that his wife has passed away, he has no family left, the world is being developed for “progress” around his
house and the people from the old folk’s home are there to pick him up and take him to live in a “retirement
village”. If you wait for that perfect time to push the limits, time will pass you by.
1/6/2010 This morning I got online and found that GMAC had billed my mortgage out of our new bank
account which I just opened and it only has $200 dollars in it. Correction. It has $175 in it because of the
newly found NSF fee! I called GMAC and spoke to 3 different people. One of them was a supervisor who
had a shitty, arrogant attitude and told me that I was full of crap, basically. This conversation ending up
costing me a broken mouse. I haven't been that mad since..... well, it was years ago. Then I ended up
fighting with the kids, Shelley and you name whoever else. I bought a snow blower from a guy named Rick
who lives off of 65th street and apparently buys junk to fix it and sell it. He sold me a piece of crap snow
blower that broke as soon as I started it at home. I loaded it up and drove back to his house and asked him
to fix it. He began ranting at me and telling me that it was his responsibility and that I probably broke it. I
explained that I was simply asking him to fix the machine and that I had not showed up telling him that he
sold me a piece of shit, like I really wanted to do. He told me that he wasn't fixing it and proceeded to go to
his garage our back. I just sat on his front porch and told him that I had all day. Which in fact, I did. About 20
minutes went by and he came back around front, apologized for blowing up and told me he would fix it, just
give him an hour. 3 hours later I drove back to his house. He came back around front, as charming as
usual, and told me again, how this was not his responsibility and was just as shitty as ever. I simply
explained that I paid for a good snowblower and all I wanted was one that worked. He said he had another
one that he had been working on and he would have it done in an hour. So this time he actually called me in
an hour. He said we can work this in two ways........ I have this other snow blower that is running and you can
take it or I can sell it and get your $150 back to you. Having now been a part of several discussions with him
and seeing his charm, I wanted a resolution tonight and not a fight another day. So, I went to his house and
got the other snow blower. It worked great at his house. I got it home and started it and it worked here too.
Yeah!
1/7/2010 This morning I spent an hour getting my new wonderful snow blower started. It worked for one
pass and then the belt broke. I shot putted that bitch about 30 feet into the yard and came inside. Shelley
then spend two hours shoveling the drive. Then she had to go work on real estate stuff and me and the boys
stayed here. I had a list of things to do, but I was sore and couldn't move my left arm. I just stuck it in my
pants pocket to keep it from flopping around. The boys and I just stayed here and really did nothing. I asked
them to clean their rooms, which of course they didn't. I told them we were going to make a pizza for dinner
as a family when mom got home and I got "I'm not really in to pizza". This is when I quit asking. About 2 this
afternoon I could move my hand, but still not much arm control and definitely no fine motor in it. Shelley came
home, made the pizza her self and it was great. I had the counters cleaned off, which she appreciated and
told me so. Tonight she is showing the kids pictures of Mexico online in preparation to our vacation. I am
trying to watch Alabama beat Texas in football, but falling asleep. Now headed and into bed, the boys have
found me and crawled in. I told them we could snuggle for a bit and of course that turned into a sleep over.
Shelley, laughing, walked in the room and said, "what in the world? You all have been wanting a family sleep
over. Merrill, did you approve this craziness?" I just laughed too. So here we are at 10:30, having a sleep
over. Beautiful!
1/8/2010 Today is my birthday. A day when I tell all those other people who are celebrating, how
important their birthday is. A day that made all other of my days possible. I have about 50% of my left hand
use back and about 20% of my arm back. I don't know that I feel that fabulous? Let me get my coffee in me
and maybe it'll help. I am going celebrate it greatly and will be back here to tell what we did!
Well, today ended up being a great day. My wonderful mother in law picked me and the boys up
at 10:30 and we went to Harbor Freight. We browsed and bought some stuff, it was her first time there and
she really wanted to go. I got all sorts of stuff and then we met Doug, my father in law, and Shelley for lunch
at our favorite BBQ place, Oklahoma Joe's. This time we went to the original one at 47th (County Line) and
Mission. I got my usual Z-Man sandwich and it was awesome as expected. From there, the boys and I
came home and goofed until our next meal. Yes, it seems that birthday and holidays revolve around eating.
I always want to go to a Japanese Steakhouse and we never do, so that night we went to Nikko's in
Overland Park. We were able to get a handicap parking spot right up front, where I didn't have to get my
power chair out in the slushy mess. The food was good as usual and mostly a fun experience for the kids.
Lyman was scared of them making the big fire so the chef didn't do it, but then he asked for it several times
through the night. However, the chef told him that he missed his chance. We ate there and came home to
do Lyman's breathing treatment and settle in for the night. Tonight I am remembering a day that was good.
Shelley is thinking about tomorrow and is not real excited about tromping through the snow to show houses.
I told her to lay her clothes out ahead of time and make sure they are something cheery. If you take your
"have to" clothes, like snow boots, then you can build around that with bright and fun clothes that carry your
mood throughout the day. If you feel bummed for any reason, you have your clothes on that you wore
specifically to be bright and cheery!
1/9/2010 Today I am getting ready to go to Liberty and see my family. My side of the family and this
time I am excited to see them. I know that it is usually stressful, but this time feels different. I am in a good
place in my life and I know that what I get back from people is some of what I give out. So this time, I feel like
I have good to give and will get some good back. I am doing laundry so that we have clothes to stay the
night. Going overnight to places is sometimes a real challenge, yet a challenge we will continue to do. It
requires planning ahead and this time we were able to know in advance what our plans were. So we got up
and started going at it. Shelley is going to show houses to some people today and maybe she will sell
something. She is wearing lighter colored clothes and this real fun necklace that her mom got her for
Christmas and just walked out to show me saying "bright and cheery"! She really loves this necklace that
she got from Ranchview Floral of all places. Now days the name of the store doesn't really mean anything. It
means they do that plus other things to stay in business. I used to laugh at this sign by Springfield, MO that
says Osceola Cheese and Small Engine Repair, but really the only difference is that the person in Osceola
is being honest about what they do. We have a couple stops and then we can head to Liberty.
It is now about 1pm and we are heading out to Wal-Mart and Subway to get the kids a bite to
eat. Then arriving at Fielding and Darla's house in Liberty about 2:30, are us, Townes, Marcia and Adam,
all at the same time. Through out the night they played with the Wii, while I played Ned's Head with
Sheridan, Aaron and Hamilton. We all enjoyed the two bottles of wine I brought and other miscellaneous
booze. One of the group, who will not be identified by anything other than Aunt Drunko, embellished herself
with a bit much. We had a great night of games, fun and very little drama. Unbelievable, but we did it and
had a great time as a family. Time go away from us and we really had no idea of time until Sheridan's
boyfriend, Aaron left at midnight and we ended up in bed about 1:30am, kids and all. The boys actually
stayed up that long. I think that is the latest we have ever let them stay up (it was really an accident)! Lyman
proceeded to cough through the night enough that Shelley came down from upstairs.
1/10/2010 This morning finds me a bit tired, as the alarm on Darla's cell phone was going off in the
middle of the night. We slept on the floor in the living room and it was on the counter in the kitchen. Hamilton
and I slept on the floor and Turner and Lyman slept on the couch together. When the alarm woke me up, I
thought it was Turner's alarm and he needed to get up for something, so I was trying to get him up without
waking up Lyman. I finally woke him up and he told me that he didn't need to get up for anything. It was too
dark for a picture with my phone, but Turner and Lyman were snuggled up so close and tight on the couch, it
was a picture in my mind that I will always cherish. Turner would move a bit and adjust his arm that is around
Lyman and then Lyman would pull it up real tight so he could put his arms around it. Too damn cute! I can't
tell how good it makes me feel to see that. I didn't grow up with a real family closeness, so this to me is
showing that I am making my kids' lives better than mine. That is my whole goal. We sat around had coffee
for a bit and talked about how it was four degrees below zero outside. After getting everything packed and
ready to go home, with some help from everyone, Townes goes to start my truck and get it warmed up, but
the battery is dead. Darla called Fielding to get him back home, because he was the only one with cables.
While waiting, I decided to go look in the garage and ended up finding a set of cables. Of course, I walked
outside with them and Fielding was pulling up. That's usually how it works. Anyway, Darla comes out to start
her Expedition next to my Yukon to start it. That takes no time really, so I now shut the hood and the latch
doesn't keep it down. After 15 minutes or so of messing with it, I went inside and got Townes and he knew
how to fix it. He showed me how to use a screwdriver to move the cable and make it manually work. So
now I got the truck running, kids loaded up and heading home. Once home, Lyman is asleep in the car, so I
carried him to his bed for a nap. Hamilton and I start watching the Arizona game where they started by
scoring 14 point in the first 4 minutes against Green Bay. He asked me to make him some macaroni, so I
did. While at the stove, I heard this loud hissing sound, followed by a couple thuds. My first thought was that
there may have been an accident out in front of our house, but the street here is only 3 blocks long and
doesn't have much traffic. My next thought was that it may have been a pipe breaking, so I went to the
kitchen faucet and turned it on, only to see that my second guess was correct. I opened the door to the
garage and I could hear the water just running out somewhere like crazy. I hurriedly ran (ok, so I really can't
run anymore, but you can imagine my hobbling ass trying to move real fast) to the basement and found that a
pipe broke right where it comes from the basement to the garage. The people that owned this house before
us had a dishwasher, clothes washer and dryer hooked up in the garage, and it was one of those lines that
broke. Fortunately I know how to fix this. I tried frantically to plug the hole long enough to get to the main, but
now soaking wet in freezing temperatures, I decided to get to the main shut off and stop it. I came back
inside and immediately stripped those frozen, wet clothes off! After throwing on some dry clothes, I finished
Hamilton's macaroni and waited for Shelley to get home from her open house. Once home, I explained what
happened and proceeded to Home Depot, where I had a gift card, to get the parts needed to fix this broken
pipe. I just decided that I didn't need those hook ups anymore and would cap them off, so I got two caps and
some pipe cement. I cut both pipes off on the inside of the basement wall and capped them. Now we
needed to eat and went to Ci Ci's in Roeland park were the pizza was just OK and there was an old woman
that we were pretty sure had pooped her pants. She smelled very badly, as she stopped to talk to one of the
workers near our table. Then, while talking, she was fidgeting with her layers of clothes and raised up the
back of her shirts and she had these huge wet spots all over her but and back. I know, maybe she can't help
it, but it really made me question if I really even want to live that long. Regardless, we had a good laugh, a
good time out and thanks to our Entertainment Book we fed our family for $9. We got home, did Lyman's
treatment and got them to bed. At 9:40 I was tired and went to bed. For Real, it was 10 and I was asleep.
1/11/2010 This morning I am up at 6:30 and having coffee alone and in silence. Ahhhh. Lyman has a
doctor appointment at 1:30 to see about his cough and being tired and pale. He coughed through the night
again and it is getting to the point that is really sucks. On one had you want to throw your hands up and say
screw it, because you are tired of fighting it. On the other hand, you have seen your child fight the stupid
disease of CF everyday and now this same coughing shit since April! Hello? Can we PLEASE figure
something out? So, today is the day to see what we are going to do. If he gets admitted it may fix him with
some Vincamiacin in and IV, but they told us the Linezolid has been showing the same result when PO or
orally. So, the Bactrim nor Linezolid have solved his issues, even when given Rifampin to "supercharge" the
drugs. Now what? Well I got Lyman to school on time and told him that I will get him at noon for lunch and
then to the doctor. If you are reading this , say a prayer for our little guy.
Well, the doctors appointment went great and despite his cough and junk, his lungs are clear
and with great capacity. Shelley showed up about 10 minutes into the meeting, so just in time from work. It
didn't take but a few minutes before it was 2:45 and someone needed to get Hamilton from school. I went
out to my truck and proceeded to load my power chair in the back. As the chair reached the top of the lifted
height to get it back into my Yukon, the strap lifting it started to make a crackling sound and then...BOOM!
My chair went straight down to the ground, yet landing on it's wheels. So here I am in the Children's Mercy
parking garage wondering what to do. I decided to fish the remaining strap out and try to just tie it directly to
the chair, but BOOM again. I attempted to lift one side, to no avail. It is very heavy and thanks to my CMT, I
am no longer that strong. At this point I am worried about getting Hamilton from school, so I start
disassembling my power chair. I got the seat portion off and loaded into the front, passenger seat. Now it is
time to figure out what to do with the base that houses the wheels, batteries and motor. OK, I have it tipped
up and resting on the back bumper. Maybe I can just tie the rope to it and use the lift in/put motion to keep
tension on it while I lift it. Damn, I need an extra hand to do that. It is at this point that I decided that I had
reached my limit and struggled to muscle that damn thing into the back of the Yukon. There. It's there, my
hands are bleeding from picking that damn thing up, but I must not waste time with my issues at this point.
Hamilton is at school waiting for someone to pick him up! So I raced from CMH to Hamilton's school, calling
them along the way to update my status. Upon arriving at his school, there are virtually no other cars and he
is the last kid to be picked up. He started to give me trouble about it, but I apologized to him and showed
him my hands. That was about all it took. So the good news of the day is that Shelley is meeting with a
listing tonight to present two offers! Yeah! So the boys and I just had some leftovers for dinner and will now
do Lyman's treatment and get ready for the ending of the night.
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