I hate drama...

 

Some people need it to survive...not me.  I like no ripples...I want everything to run smooth. 

 

I know people that strive to have drama in their lives.  Why?....??  I guess they like the excitment, their lives aren't complete without it.  They can take something so small and blow it into this big over exaggerated ordeal...or take a major catastrophy and make it a catagory 10...storm of the century. 

 

Cliff has been in Maryland with Elyssa (they have been having a great time by the way) he called me on the cell Sunday (I was at Wal-Mart...Ughh)...me thinking he is calling to tell me they are starting back...not.  He called to tell me he had car trouble the night before.  Elyssa's brother knew a mechanic and they had the car towed to his garage.  The mechanic would look at the car on Monday.   Elyssa's brother was renting them a car so they could start back home in time to make it to class.  Cliff wasn't upset, Elyssa wasn't upset, her brother wasn't upset.  Cliff had it all worked out.  Depending on what the mechanic said we would decide later what to do with the car.  

 

A little info on "the car"....Cliff's car has been thru the mill.  The dash is all scarred...he puts his chair in the front passenger seat.  The arm rest...well there is no arm rest...well there is an arm rest but it is home made.  There are dents in the passenger door, the rear bumper, the trunk, the rear passenger door and a scrape going along the drivers side...all of which Cliff has no clue how they got there...ummm.  The car has been all over the US....Florida more times than I can count, South Carolina, St. Louis.  Anytime he and his friends went anywhere Cliff drove or I should say they took Cliff's car so he could drive.  Plus the two and a half hour drive he would make every month when he was going to Purdue.  It is a 1999 and probably has close to 200,000 miles on it.

 

What I didn't know...Cliff had called his Dad before he called me.  He was at "the garage".  Cliff told them the samething he told me...he had it all worked out.  I don't think they heard the same thing I heard...I was being proud that Cliff had a catastrophy and had worked it out himself.  No drama.

 

Cliff had a catastrophy but my family, neighbors, friends blew it into the storm of the century...I got home and they had the car dolly hooked up to the truck ready to leave, they were going to haul it back here and have it fixed...in the next breath someone else comes up with the idea that the car shouldn't be fixed, just leave it in Maryland. (Cliff's car is equipped with hand controls...very exspensive hand controls.)  Or John could drive out fix it and they could drive it back.  It was total chaos...I think the whole town knew he was in Maryland with car trouble...phone ringing, people stopping by, everyone had their own opinion about what we should do!!!  (I tell you I live in a very, very small town). 

 

All the while I am trying to fix supper...my tummy was growling...which we didn't get to eat until about 9:00...and that in itself made me a not so happy camper.

 

When everyone left and we finally took the phone off the hook, we sat down and decided to let Cliff handle his catastrophy.  shewwww!!!  I can breathe...deep breath in and out...as I look around to see the aftermath of the storm that had just swept thru...truck hooked up to car dolly in the driveway, tool box with tools strung...they didn't know what kind of tools would be needed in case they drove out to fix the car.  Coolers ready to be packed for the 12 hour drive....I HATE DRAMA!!!!

 

 

Cliff and Elyssa made it home in time to get to some of their classes.  They are both very exhausted.  I know this because Elyssa came to our house last night instead of going home....they are still speaking to one another...yeah!!!!...and still want to be together 24/7. 

He said they had a wonderful time...he even entered a texas hold 'em tourney in Atlantic City and won almost five hundred dollars.  

 

"The car"...Elyssa's brother called...with some not so good news...the motor is shot...dead...as in needs a new one.  Cliff has decided...yes I said Cliff has decided...to have Elyssa's brother remove his hand controls and mail them to us, he is letting her brother do with the car as he sees fit...signing the title over to him. 

 

Cliff is without a car, but I am sure that doesn't mean he will be stuck at home...he has Elyssa ya know.  So if anyone knows where he can find a good used reliable car just let us know...if it doesn't run thats ok because we still have the car dolly and all the tools and coolers to make a road trip.

 

 

update:  I would like to thank everyone for your concern about my health.  I assure you I am feeling 100% better,  I even boxed my best friend up and put her back in the bathroom closet.   

 

Sorry I haven't been around in awhile...

 

I haven't been feeling very well lately...but I am fine now with the help of the doc and a wonder drug called Celbrex...getting old sucks!!!

 

I have had back problems since Anna was a month old...I slipped a disc in my lower back.  I was in the hospital in traction for a week.  I have been very careful since...I quit playing volleyball, no golf, I couldn't pick Cliff up anymore (he learned to get in and out of his chair by himself).  I was not going to have that kind of pain again...

 

That's what I thought...two years ago I woke up with a stiff neck like no other...I didn't go to the doctor right away...who goes to the doctor for a stiff neck...?  About two weeks later the girls I work with talked me into getting the neck checked out.  My neck was not hurting anymore but I couldn't turn it (I had grown accustomed to it and didn't realize I wasn't turning my neck).

 

Degenerative disc disease in my neck...this was the first time I was introduced to Celebrex.  It took several months for me to be completley pain free.  I had to learn how to sit properly at work...reposition the height of my computer, chair, desk.  When I read I have to have the book at eye level (harder than you think).  Sleeping was a biatch...I am suppose to sleep on by back...yea right!!  I have learned to deal with it...I can tell now when it is coming on...I just take Aleve for a few days, my heating pad becomes my best friend, and I try to make myself more aware of how I am doing things.  I would love to take Celbrex everyday...but I can't...after a few months it starts making my heart race.

 

Right around Thanksgiving I could feel my neck stiffening..I started hurting from the top of my head, my right eye and check bone.  My ear felt like someone was sqeezing my ear canal....my neck...down my arm to my elbow, my colar bone and sharp pains down my shoulder blade.  I would come home from work and sit with my best friend, the heat pad, all evening...John, the husband was in charge of supper...hehehe...with Anna's help we didn't starve. 

 

The only shopping I had done was what I had gotten the day after Thanksgiving...Thank God for gift cards.  Christmas has come and gone...it wasn't the best Christmas on record, not many surprises and special gifts from me...but we still made many wonderful memories. 

 

Anna went to her first high school formal...The dance was Thursday the 22nd.  I had felt so crappy I didn't even think about what she was going to wear...and Anna didn't want me to worry about it so she didn't say anything and just wasn't going to go.  I was not going to have that...I got my crappy self pulled away from my best friend, the heat pad, and took her shopping for a dress on Monday evening.  She found a beautiful little black dress.  (I'll post some pics soon)  I couldn't help with her hair so we made an appointment with our hair dresser.  It wasn't exactly the way she wanted it but she was still beautiful.  Everything was falling into place...They left, Anna and the boyfriend, to meet at a friends house to take some pics.  I was just a few minutes behind them.  When I crested the hill I was like oh no someone has had a wreck (it was in the lane going the opposite direction)...I thought to myself..boy that looks like Brett (Anna's boyfriend)....oh my that looks like Anna's car....OMG the kids had a wreck...

 

I pulled over...ran across the road...Brett was ok, he had been driving, he was looking under the car to assess the damage...Anna was calmly sitting in the car talking to her Daddy on the phone.  I could hear the sirens coming...Mr. Lubker was running across the field (Mr. Lubker is an elderly gentleman that should not have been running).  He is the one who called the police and an ambulance...I thought we were going to have to keep the ambulance for him...but everyone was ok and there was no need so when Tom Wright who can do no wrong (the police officer) arrived he called off the ambulance.  My mother was just getting off of work and came driving by...she freaked out when she saw me standing along side of the road, she almost wrecked..she jumped out of her car and came running along the ditch that the kids had ended up in...all frantic and in a tissy.  She had the look of terror on her face (OMG is that what I looked like when I came upon the wreck) I finally got her calm down and talked her into going home.  Tom and Brett talked and Tom took all the kids info.

 

There was a car that made a sudden stop, the sun was glaring, Brett swerved to miss the car, it spun and they ended up in the ditch on the opposite side of the road.  There would not have been any damage but there were big rocks in the ditch and it tore her bumper up.  They were both too shook up to go on so we took the car back home to show Dad and I drove them in my car to get the pics taken.  By the time we got there everyone knew about the wreck and was worried since they knew the ambulance had been dispatched.  ( I live in a very, very small town ) 

 

The kids all went out to eat, they stopped by our house at about 7:30ish to kill some time so they could make a cool entrance (the dance was from 7:00 - 11:00).  They hung around until about 8:30...Anna called at 10:00...she was ready to come home.  Too much excitement for one night!!

 

 

 

Cliff and Elyssa are just about inseparable...I think I may have to start charging her rent...hehehe.  They left late New Years day to spend some time with her Aunts and Uncles on the east coast.  He called several times yesterday...they made it safely to Atlantic City and will be spending a few nights before heading on to visit her family in Maryland.  They will hit Washington D.C. before heading back home on the eighth.  This will be a true test of love...If they come back still speaking it must be true love...going on vacation just the two of them...well lets just say it is different going on vacation with a special needs person.  I know this is crazy but I worry about her loading and unloading the luggage and supplies.

 

I hope everyone had a Christmas filled with lots of joy and a safe and Happy New Year!!!

 

 

 

Just a short post to wish all my blog dork friends a very Merry Christmas...I have met a lot of special people in this crazy blog world...we each have our own unique story.  I wish I could someday meet everyone of you... 

 

I hope everyone has a healthy, happy, and safe holiday spent with family and friends and that someone special that may be in you life.  May Santa bring you everything on your wish list. 

 

It has been extra crazy around my house lately so if I don't get to make another post by the end of the year I want to let everyone know how much I appreciate the great comments, and let you know how I love reading all your blogs. 

 

 

 

 

 

 

 

 

 

A little about Anna....

 

It took us three years to get pregnant...I put it in the hands of the lord and had just come to accept the fact that He did not think I could handle another child...no one in the family wanted me to get pregnant so when we told them I was..some were upset.

 

I was not afraid during my pregnancy but when I went in to have her...well lets just say the nurses delivered Anna. 

 

She was a very good baby...until around the age of 3 months...she cried all the time, she was always sick...coughing, runny nose, diarrhea.  We changed formulas...and changed formulas...she got to where she would take a bottle and have diarrhea at the same time.  It turned out she has severe alergies and asthma..and she is lactose intolerant.

 

Anna...my rambunctious child...She has always smiled, she was a climber ( it was nothing for me to find her standing in the middle of the kitchen table trying to crab the ceiling fan), she started walking at 9 months, talking at about a year and hasn't been quiet since.  She could never (and still can't) sit still to watch TV...she has to be doing something at all times.  There is no inbetween...she is either on the go,go,go...or sound asleep.  (Anna has alway been so rambunctious I tell her if she would have came first there would be no Cliff)

 

**I had someone tell me once - ...I was probably trying to get Anna to sit still in her stroller and this gentleman came up to me and told me my little girl had spirit and I should not break it..that I should let her spirit flow.  After that I became one of those mothers that just let her kid go...she wanted out of the stroller out of the stroller she got...I didn't get a whole lot of shopping done when she was with me but everyone seemed to be much happier. 

 

**While out shopping with both kids in tow...Anna was all of a sudden out of site in a clothing store.  I looked for her, Cliff looked for her.  We called for her...told her it was not a game...  They locked down the store..noone in...noone out...every shopper and employer was searching everywhere.  (had several people who were not very happy)  I of course was frantic...Cliff was even worried.  I am sure it was only minutes but it seemed like hours.  We found her in a clothes rack, she was playing hide-n-go seek.  When I found her...she jumps out and says I win...!!!

 

Anna did not know a stranger...she laughed and spoke to everyone...until...

 

When Anna was two Cliff was hospitalized for a very long period.  She was very well taken care of and when Cliff was stablized she stayed the weekends at the hospital with me.  This was very traumatizing for her.  When things finally got back to normal Anna was totally attached to me.  I could not get out of her site...let alone leave her with a babysitter.  She would not even sleep in her bed.  For years she made a bed beside me on the floor.  I woud have to lay with my hand on her chest.  If someone would talk to her she would hide...she was not the same little girl.  I thank God Cliff had those "good healthy years"...

 

I enrolled Anna in a dance class, gymnastics...anything to get her energy out and yet be away from me for a bit.  She would be fine as long as I was in the room but the minute I would leave she would get down right hysterical.  Thank goodness the dance teacher was very understanding...I would start sitting in the doorway for several classes...then I would tell her I was going to get a drink and just be gone for about 30 seconds working up to the full 30 minutes of dance class.  She didn't get on stage that first year for the recital but we were making progress.

 

School was hard...she stressed herself out so bad everyone thought she had a learning disablilty.  She would have asthma attacks from the stress.  When Anna started first grade I started working (for the first time and I still ask the question why...why if you could stay home why would you work...the fact was I was very, very bored)  I would take her to school and was there to pick her up when school let out.  By the time second grade came around things with school was better.  She had a teacher, Mrs. P., she dearly loved and the teacher loved her (Mrs. P is now trying to hook Anna up with her nephew, she wants her in her family very badly)  They were still thinking she had a learning problem but emotionally she was better.  Reading at school was horrible...so at home (and had them do the same at school) she would read a sentence then I would read...the next year she would read a paragraph then I would read one...by the time she was in the 5th grade she was doing quite well...

 

She never stayed all night with friends...they came to our house.  If there was a birthday party or a sleep over...I was also invited..She would take her sleeping bag and get into her pajamas, go thru the whole routine...when everyone started going to bed we would pack up and go home.  She never stayed with grandma, cousins, Aunts.  When Cliff was in the hospital she stayed home with Daddy at night (I would talk to her on the phone until she fell asleep) and would go to Aunt Nimmy's (we had a day care together) during the day.  She finally started sleeping in her bed by herself at the age of 15 ( I am not joking)...that is when she had her first boyfriend, he would talk to her on the phone until she fell asleep. 

 

Anna has since became very involved in sports and loves to dance.  She did competition dance for about 7 years...she has layed off of dance in the past couple of years to pursue her love of volleyball...and...she has made the high honor roll every trimester of high school. 

 

She was your Miss Indiana Pre-teen (beating out 184 girls) and was 16th in the Nationals also winning most photogenic, best spokes model, first runner up in talent (not that I am bragging, hehehe).  With hard work and patience we have helped Anna over come her emotional instability.

 

Anna is now a 16 year old sophomore...She is very beautiful inside and out, she is very outgoing, sociable, and still my rambunctious child...

 

 

 

 

 

High School...Cliff's high school / teen years...was a time I was prepared for...I was prepared for rebellion, prepared for depression, prepared for...well I was prepared.  I had been told by the health care profession that these would probably be the most trying years for our family...it would be a time when Cliff would resent being in a chair...and his current health situation ( i.e. the rods) wasn't going to make matters any better. 

 

Most of the things he was involved in...wheelchair basketball, skiing, tennis, rugby...he could not participate in until his back was stable...and this was one surgery Cliff was not willing to go thru at this point in his life.  (The surgery had a 9 month recovery period, at the least) 

 

We looked upon his friends to keeps his spirits up.  Cliff never let others know how bad he felt, so when I sat his friends down for a little heart to heart he was quite upset...but that was probably the best move I could have made...for every single day of his high school years there was always someone at our house.  Our house was Grand Central Station.  We lived in town on "the strip" so if you were a teenager you stopped by our house to find out what was going on.  If noone was home there was a black board telling where the happening place was.  Our town is very small - no movie theater, no shopping malls, no bowling.  You made your own fun. 

 

***We camped a lot with a big circle of friends...one weekend Cliff had a couple of friends camping with us.  We liked to do a little bit of beer drinking when we camped so the beer was plentiful.  Never did we have a problem with any of our kids dipping into the beer.  The kids always hung out by the bathrooms.  Well this night Cliff and his friends were heading over to the primative area of the camp grounds...I thought this a bit strange so when I saw them snooping around under the camper (where we kept the beer) I followed them until we were out of ear shot from the rest of our fellow campers.  When I spoke those boys just about jumped out of their pants.  All I asked was "whats up"...?..well they just started stuttering around...so I knew what as going on.  I walked with them a bit...they were so nervous they just started spilling their guts.  Confessed to taking some beer...not many just enough so they could have a few apiece.  I started tearing up and told them how disappointed I was with them...I told them I thought we had an open communication...I told them I couldn't believe they were doing this behind my back...they should have asked...we could have maybe worked something out.  By the time we reached their destination they felt so bad they handed the beer over and went back to the camper with me...all apologizing along the way.  When we arrived back at our camper I sat the four boys down told them how proud I was of them for realizing going behind my back was wrong.  I told them I did not approve of teenage drinking but I was a teenager once...I had grown up in this same town.  I did realize there was nothing to do and how they thought drinking was an option. 

 

I opened up five beers gave each boy and myself one and we sat around the fire...talking...I told them this would be the only time I would give them any alcohol.  I understood the drinking but I would not tolerate any drinking and driving.  If they were out somewhere and needed to get home they were to call me...there would be no drinking at my house...do not ask me to buy your beer...we bonded.  I was very proud when I would received a phone call from a teen asking me if I could pick them up...or when a girl friend would drop off her boyfriend at my house because he was too afraid to go home.  I tried to teach them about alcohol abuse and stress my no tolerance for drinking and driving. 

 

***Recently going thru some of our home videos I found several videos Cliff and his friends made...they would tape each other sledding, playing hockey, doing bicycle stunts, sitting around talking, playing cards... We invited several of his friends over to watch them...I hear some of the stories behind these videos and they make me smile...some of them scare me (like when they went sledding and couldn't get Cliff back up the hill so they tied a rope from the sled to the truck and gunned it)  ...some of them I don't want to hear out of embarrassment (Cliff a friend and two girls played pa-didle while driving home from a concert, who ever lost had to take off a piece of clothing..they drove home completely nude..so use your imagination as to what happened next)...it made me realize...I made the right decision that day I let those boys drink that beer sitting around that fire...They were not afraid to talk to me...They trusted me...They respected me...

 

This past summer one of the boys, Corey, got married...I was treated as his "second" mother...corsage, Corey escorted me to the front of the church to be seated behind his mother, intro at the reception.  All the boys have gone to college...one air plane mechanic, five engineers, a teacher, a lawyer just to name a few. Only Steve still lives in town.  They are all very close...whenever possible they get together...and every once in a while I'll get a phone call from someone needing a ride home.

 

I know I have made some bad decisions raising my kids...I realize everyone does...I was always afraid of the decision I made that day when I let those boys drink sitting around that fire (some of you will probably judge me for it) but I think the decision I made was the best for my son and his friends.  I think that could have been the start of "the rebellion" if I would have reacted negatively.  Instead I formed a bond with them...

 

The so called "rebellion, depression, resentment" never happened.  I think...no I know...it is because those friends of his stood by their friend...he was alway included.  If they couldn't figure a way for Cliff to do it...well then noone did it.  Maybe that is why so many of them turned out to be engineers...?

 

 

 

 

 

 

 

 

During those "good" healthy years the doctors were keeping a close eye on Cliff's scoliosis.  He had x-rays (scoli films) every six months. 

 

The doctors couldn't believe the mobility he had.  He was so very active, which was good for him mentally but physically his body was wearing down.  (If I would of known then what I know now I think I would have slowed Cliff down a bit, it would have saved him alot of pain).   Cliff's situation was so very rare no one knew the long hard road that laid ahead for him. 

 

The steel rods that were placed in Cliff's back when he was eight, the same rods that were infected and just about killed him when he was nine were broken inside his body.  The bone grafts had never taken.  The bone was suppose to grow over and around the rods but because of his mobility the graft in the middle of his back (around the area of the heart and lungs) had never grown.  Cliff was 14 and really into wheelchair basketball...he was heart broken.  We were devastated.  He finished out the basketball season, that was the year they won the National Championship.  The Championship was bittersweet, it was a great ending but was something he would never be able to participate in again.  If they would have known his rods were broken they (coaches and officials) would never have let him play.  It was our little secret.

 

Cliff went a whole year with these broken steel rods in his back.  Yes the rods were steel.  How does one break steel rods...?  A question no one could answer.  They wanted him to be very healthy, wanted to build up his iron.  Plus Cliff did not want to have another surgery.  He was totally against it.  That was the hardest part.  A teenage boy, high school, peers, girls.  Can you imagine...?he was Mr. Cool now and socially this was devastating. 

 

The summer Cliff turned 15 he had no choice but to have the surgery.  The rods had broken into 5 pieces...his scoliosis was getting worse...the rods were lying near his heart and lungs.  He knew it was time...he now had a large hump ( like that of Quasimoto ) on his back where his spine was curved so badly from the scoliosis.  The surgery...well the doctors decided it would be too devastating to remove the rods so they were going to try to fix them.  They tried to reconnect the rods with steel nuts and bolts...the surgery wasn't too bad...only a couple of hours and about a week hospital stay...Cliff recouped very quickly.   

 

At the one month surgery check up our news was...well not what we expected.  The bolts did not hold...the surgery was useless and had made things worse.  He now had nuts and bolts attached to nothing in his body.  This was probably one of the hardest times in Cliff's life.  He clammed up.  He didn't want to talk about it.  It was as if...well if you don't talk about it then it will go away.  He was looking at a surgery that was so horrific and uncomprehensible the doctors would not give us all the details in one visit.

 

The surgery was scheduled right away.  They would have to go in thru his back...his back which had already had so many surgeries you would think he would have a problem with scar tissue...chip away the bone graft that had taken (which was most of his back, the only place it did not take was the area around the shoulder blades)...remove the twist wire that was holding the rods to the spine...somehow remove the steel rods from his pelvic area.  He would need lots of blood.  His school aid Kathy had always donated blood for him in the past.  Neither John nor I have Cliff's blood type.  We had to find more donors.  I always wanted someone I knew to donate because Cliff was born when Aids first came about and we had to worry about that his first few years...they did not know if he had tainted blood or not.  We found several wonderful people to donate.  They used every pint we had during the surgery...

 

The surgery was very long...about 12 hours.  Family and friends were present.  None of Cliff's friends...Cliff didn't want any of them there...he didn't really want any of them to know.  But we live in a very small town...so everyone did know.  The rods were broken in five pieces...some of them were curved...they were about the thickness of a pencil.  There were nicks all over them where they had to chisel them out.  It was really sad when they handed them to me...these were the rods that made him sit up proud and tall...these were the rods that gave him confidence...these were the rods that straightened his body and took pressure off of his lungs and heart...these were the rods that had almost killed him from infection...these were the rods he loved so much that the doctors did everything they could to save them.  Now they were broken in pieces wrapped in a blue hospital towel still warm from being sterilized.  I cried, silently as I held them...for they would not be putting rods back in.  There was too much trauma to the spine.  We had assumed they would take one set out and put another new stainless steel set back in.  We were not told there was a possibility they couldn't put the rods back in.  Cliff would be very upset.  Well upset is not really the right word...angry...devastated...

embarrassed by the way his body would now look.  He was now one heap.  All slumped over and twisted.  You have to remember he was a 15 year old good looking high school boy who before this surgery was very cool and confident. 

 

Cliff's hospital stay was about two weeks...he recovered very quickly at home and was able to start his sophomore year of high school with half days for a couple of weeks.  I had to make him go.  I had to make him proud and confident again.  He learned to live with his deteriorated body...a body that was hunched over.   A body that could not stretch out...that was alway in a ball form.  A body that so needed new rods. 

 

On our next visit...more bad news...they could no longer do any more surgery going thru his back.  There was too much scare tissue...it was taking too long for the incision to heal.   To put new rods in he would have to go thru a risky procedure where they enter thru his side and collapse his lung to get to his spine...

Sorry...it has been a long holiday weekend.  Thanksgiving at my house on Thursday.  Of course we went shopping on Friday plus went to Anna's boyfriends basketball game (swoo that was a mouth full)...Anna's boyfriend goes to a rival school.  Up early on Saturday to a basketball tourney for our school (Anna is a varsity basketball cheerleader and my nephew is one of the star players)  Home late...up early today...Anna had the final day of tryouts for club volleyball...she made the 17-1 team.  Then Thanksgiving with the in-laws.

 

 Briefly...Her name is Alyssa. She is a red headed tiny little thing.  They are both studying psychology...that is where they met.  She crashed here last night so I was able to get to talk to her a little before the rest of the family.  Gave her fair warning.  She is the youngest of six.  She lives about 30 minutes away.  Anna caught them making out on the couch.  Hehehe... 

 

He goes shopping with her - he hasn't gone shopping with me since before he got his drivers license...so it must be love. 

 

I haven't sat her down and asked the more serious questions...Mandy told me not to scare her off on our first meeting...like when are they gettin married, how many grandkids is she going to give me..you know all the important questions.  I'll save those for the second meeting... 

 

This time of the year the big question is...What are you most thankful for?  This is a question that in my younger years was very hard to answer...I was really upset with God.  It was hard for me to do the whole Thanksgiving thing.

 

But now I realize God was not someone I should have been mad at but someone I should have been thankful for.  He has always been there...he..God..was always there comforting me in my time of need, giving me strength, holding my hand, guiding me towards the wonderful life I have today.

 

I am not wealthy, we have had more than our fair share of health problems, my looks I would say are average (although my children are the two most beautiful people on earth), I have an average unglamorous job...I still love where my live has led me.  I like the person I am.

 

I live in the town I grew up in, I am still married to my high school sweatheat, I have a very good relationship with all (in-laws included) of my family members.  My children are happy and are headed in the right direction...to have a wonderful adult life.

 

And...I have had one wish granted this year.  If you look at my wish list you will see that I wish for Cliff to find love...well he has just informed me that a girl whom I thought was just a friend is someone special in his life.  They have been together for quite awhile now and thought it was time she met the family.. : ) She is coming for Thanksgiving... : )   : )  : )  My heart is about to explode I am so happy.

 

If you remember the..a day in my life that we did for Darlene...I did not get any sleep that night for Cliff did not come home or call till wee hours in the morning.  He said that was the first night they realized they were more than just friends...they had started talking and before they knew it..well we know what time he got home.

 

So this year I am thankful to God for making my life complete...for guiding me thru my families journey, for making me be me. 

 

Have a Happy Thanksgiving!!

Simple question...Why is it when someone meets someone with special needs they automatically want to pray for them, heal them or have pity on them...?

 

We have on several different occasions had people just walk up to Cliff and want to lay their hand on him.  One that comes to mind...We were at a wedding - John was in the wedding, I was pregnant with Anna so Cliff was around 6.  This wedding was in an old country chapel in the middle of no where...town of about 20.  Cliff and I were standing in the church front lawn waiting on the husband...he was in the receiving line.  This little old man ( the preacher's husband ) who looked like the scary old man from poltergeist, came up to Cliff, placed his crooked old hand on Cliff's forehead and threw the other in the air and started praising Jesus.  Asking Jesus to forgive the sins of these parents and heal this innocent child.  HEAL CHILD HEAL !!!  He yelled over and over.  I grabbed the old poltergeist looking man's hand and started yelling for the husband.  He was already in motion hearing the old scary looking man's chants.

 

Cliff had no clue what was going on...it really truly scared him.  He really thought the old man was the man from poltergeist.  He couldn't understand why he needed to be healed.  To Cliff there wasn't anything wrong with him.

 

Fast forward to Cliff's first year at Purdue...his roommate was a nice boy...he was an upper classman ( Cliff had to stay in the upper classman dorm because it was more assessable for him )...he was from a good Christian family.  The last week of school, the family went up to move some stuff home and have an evening with some of the friends Cliff had met that year.  They started telling us stories...Most of them were funny stupid things they had done thru the year, all that college stuff that a mom doesn't really need to know.  Then they told us this stuff about Cliff's roommate...he had been acting pretty weird towards the end of the semester...Cliff had called one of them one night to see if he could stay in their room...the roommate was talking in tongue and trying to heal Cliff...he kept trying to get Cliff to go to these so called "church meetings" so they could pray for him...he wanted to do these rituals...the last couple weeks of school Cliff never stayed in his own room.  Do you think he would call and tell his mother this was going on...?  He didn't want me to worry...  It ended up the roommate had gotten himself involved in a cult.  Never heard anything more from him or his family.

 

Forward to the spring of 2004...Cliff just had one of the biggest, most painful surgeries of his life...we were in the waiting room at Riley for one of many post op visits...lots of little kids...Cliff was looking pretty good, sitting nice, straight and tall...we were in conversation.  A little girl was playing quietly beside us and her mommy made her move so she wouldn't bother the "poor" boy in his wheelchair.  Another mom sitting next to me leaned over and told Cliff how sorry she was that he had to be in a wheelchair. (We are talking Riley people...lots of situations a lot worse than my sons...but because he was in a chair she had to have pity)  Cliff's response...You don't have to feel sorry for me Mam, I have always been in a chair, I have lots of friends, I go to school, I drive a car, I have a great family.  I have a wonderful future.  *big smiles from Mom*  She sat speechless.  She did not know how to respond.  She looked offended that he did not want her pity.

 

 

 

*Prayers are wonderful...I pray everyday, but I do not pray for Cliff any more than I pray for Anna.  I usually pray that God gives me strength.

 

I can not speak for everyone...but we, my family, would rather someone come up say hi...ask questions rather than stare, whisper, offer pity or prayer.  Most of the time it is not Cliff that needs the prayer but me, his mother...pray that I don't kill his little ass when he does not call me and tell me when these...mom needs to know things are happening.

 

 

 

 

To top off those wonderful "good years" Cliff was named Riley's posterchild. 

 

It was a big honor...he made many special appearances...different non-profit organizations, Psi Iota Xi in several different towns, Knights of Columbus, Shriners Club to just name a few.   He was interviewed by several newspapers, some of them had just done the story about him and his dog.  People wanted to meet Cliff and hear about his miraculous life so far.

 

When the miracle network started their marathon we were really hit up to help out...to get people out to make those donations.  Donations in our small little one stop light town soared.  Everyone wanted to do their part.  

 

Then came the part where Cliff was to appear on TV...he was suppose to tell his little story and present a check to the marathon director.  He froze...we are talking "live TV".  Not one word came out of his mouth.  He looked like a scared little puppy. 

 

He was a cute little boy who had a wonderful story to tell...they turned to me...OMG...I do not speak in front of people, OMG. 

 

My heart started racing...I broke out into a sweat...I could feel my knees starting to buckle...then...I felt the husbands hand give me a squeeze, Cliff looked up at me, and I do believe Anna was right there attached to my hip.  I looked around..we were standing in the Atrium at Riley (someplace that was very familar to me). 

 

With the security of my family, my mouth opened and words just started flying.  I don't really remember what exactly I said but I know I rambled..forever...they had to stop me so they could go to another story.   

 

I made it...I have know clue what I spoke about!!...I don't even know if I spoke of Cliff...HaHaHa  I had done something that I had never ever been able to do (speech class in school..I couldn't get up in front of everyone to say my speech to get a grade, I chose to get an F) 

 

I think that moment is when I started blooming as a person.  I was more than the husbands wife...Cliff's mom...the neighborhood babysitter...the shadow in the back ground.  It had given me so much confidence. 

 

 

***Sitting back looking at my life up to the starting of those wonderful "good years"...I was really just going thru the motions.  I was just doing what needed to be done.  I was letting life pass me by.  I was letting life pass my family by.  I...we weren't really apart of it.  I think that is why I started getting Cliff involved in everything.  I wasn't going to let life pass him by. 

 

For those of you who read my blog often...if you get one thing out of what I am trying to say get this...no matter what is going on in your life at this moment, know matter how horrible it could be...know that life does go on.  It is hard...sometimes very very hard.  Sometimes you can't see that light at the end of the tunnel.  But know it is there...know that making the best of your situation will be better for you and those around you in the long run.  Take hold of your life and don't let it pass you by!!!     

 

Camp Riley....Bradford woods...a camp for special needs kids...two weeks.  The longest two weeks of my life.  Well not really...

 

Cliff's occupational therapist at Riley had talked to us about Camp Riley for many years.  When he was finally well enough we decided one summer that it was time for him to go. 

 

Their rule...you drop them off and there is absolutely no contact for two weeks.  Two weeks.  Yeah right.  He had never even stayed at grandmas over night.  He was ok with it...I was not! 

 

The place was beautiful...placed deep in the woods.  Flowers blooming.  New wide concrete paths leading everywhere.  Nice homey log bunk houses.  A huge dining hall.  Big lake.  Nice boats.  Tree houses.  Horses.  Very handicap accessible.  Everything you could ask for. 

 

The orientation was nice.  We toured the grounds, I was very impressed.  They had thought of everything...they even had a way to get the campers into their tree houses.  Then it was time to leave.... 

 

Anna wouldn't let go of her brother.  She was around 5 and didn't want to leave him.  She was screaming "no Mommy don't leave Cliffy".  Cliff was 11...I could tell he was a bit nervous.  (I was ready to puke.)  If John had not been there I would not have left him.  

 

In the two weeks Cliff spent at Camp Riley I picked him up or visited him 4 times.  ( no contact for two weeks, I showed them)  They wasn't gonna keep this Momma from seein her baby...I had scheduled a doctors appointment and x rays.  It was a two hour drive from our house to Bradford Woods then another hour and a half to Riley.  It was well worth it, that was extra time I was able to spend with my baby.  I scheduled two interviews with two different newspapers...they wanted to interview him because of his accomplishments at the state fair with his dog Razz.  During this two week period was also the time when the Purdue extension's taping for their 4-H video was taking place.  They just so happened to want Cliff to participate in the video. 

 

The Camp Riley administrators, well let's just say they weren't very happy with me at the end of the two weeks, but hey I couldn't help it if these things had already been scheduled...hehehe.

 

Camp Riley, a camp for special needs kids...these kids are put in categories according to their different level of abilities.  Kids with diabetes all go at the same time.  Amputee kids had their own two weeks.  Then there was the spina bifeda kids.  These kids can have all different levels of abilities.  (Cliff does not have spina bifeda, but that is the category they put him in when they treat him)   Because Cliff's paralysis level is so high people assume the worst.  Even doctors and therapist.  They assumed he had learning disabilities.  He went to camp with children who could not communicate the same way he communicated.  We are talking about an eleven year old boy.    

 

The last day of camp was a picnic for the families.  During the picnic Cliff filled us in on his adventure.  He talked of Jason; who laughed every time Cliff would pop a wheely...Willis; loved to watch Cliff shoot basketball...Bill; who would get real excited when Cliff would talk to him...John; went fishing with him...Jim; he liked to play cards so on and so on.  Then he introduced us to Jason, Willis, Bill, John and Jim....  I was so proud of my son he had found a way to communicate with his fellow campers. 

 

He then introduced us to the counselors that made his two weeks so special.  These counselors told us how special our son was.  He could have sat back and became a shadow, he could have just went with the flow.  Not Cliff he found something special about each child.  He liked to make them laugh.  He liked helping them.  A little boy who needed so much help liked helping his fellow campers.

 

Cliff never went back to Camp Riley (I couldn't leave him that long)...But he did go back to Bradford Woods, when he was a teenager, as a camp counselor for their handicapable camp.

Thru those "good years" Cliff not only enjoyed wheelchair basketball but he was able to participate in a number of different new adventures.  This is when he started 4-H with our dog Razz.  He and Razz were always inseparable so we knew they would do very well together when it came to dog training. 

 

His 4-H leader was a go getter and was able to get rules adapted so Cliff could participate.  A shorter lead for wheelchair participants was the main rule change.  The longer lead kept getting caught under his wheel.  They won right and left.  Most people were very happy for him but there were the few that were intimidated by the chair.  In some of the shows they would let the able bodied kids and dogs show and then have volunteers show with Cliff.  That was OK because he and Razz still blew them away.  They went all the way to the state fair several years in a row.  They even won over all dog drill team at the state fair.  Cliff was the first wheelchair 4-H dog training participant to win a major award. 

 

Razz retired after the first couple of years.  We had to put him on steroids for a medical problem which made him aggressive toward other dogs - he was very protective over Cliff and would go after the bigger dogs - Razz was a scottish terrier!! 

 

When Razz retired from 4-H we got Hershall, a chocolate lab.  Cliff did just as well with Hershall as he had done with Razz.  Winning several times at the county and state fair.  He was hyper in his younger days but minded very well.  He knew when he was in the house or when he had his lead on that he was to be very well behaved.  When Hershall was full grown he weighed 122 pounds and his back stood even with Cliff's lap.

 

Hershall gave Cliff energy...funny story...They use to close the street - a giant hill - by our house when it snowed because it was a save place for the kids to go sledding.  The husband, being the most ingenious person I know, came up with the bright idea that he would put a harness around Hershall and tie it to the sled...with Cliff on it.  Thinking Hershall could pull Cliff back up the hill....he forgot to think about them going down the hill.  They were fine going thru our yard, down the driveway, down the half block to the hill, then Hershall seen all the kids and got really excited, John let go of the lead and away went Hershall...at full sped, with sled and Cliff...I am screaming, John is running, and Cliff is yelling "faster Hersh run faster".   (Bet we could have won funniest home video's 100,000.00 prize)

 

At the bottom of the hill was a baracade and then the next block was our towns only stop light.  Well what does Hershall do...?  He runs around the baracade next to the sidewalk which causes the sled to flip, which in turn made him stop.  (Thank God)  I'm still running and screaming - with Anna on my hip, the husband is running and people start gathering around Cliff and Hersh.  I just knew I was going to get there and he was going to be all bloody or have something broken but to my avail...I see a smiling child with giggles and his dog sitting obediently by his side.  Cliff wrapped his arms around Hersh and said "thanks buddy".  He looked up and smiled...that was cool Dad can we do it again...?...the husband handed me the lead... and he pulled Cliff back up the hill. 

 

We have lots of memories with our Hershall...He was a very fun dog.  He was great to lay on the floor and cuddle with.  He was a big baby who was scared of a loud noise.  He would hide in the bathtub when it thundered.  We eventually came up with the idea to put an old set of earphones attached to a walkman -playing some county tune of course - on him when it stormed.  Hey it really works.  But Razz was the boss.  Hershall always let Razz eat first, if they had chew bones and Razz was done with his he got Hershalls.  Razz got the first pick of everything. 

 

When Razz died Hershall was a short nine months behind him.  Hershall was 13 when we had to put him down.  He had developed arthritis, he had several fatty tumors removed, he had  hypothyroidism, and crystals in his bladder (compares to kidney stones).  We had to have him cremated...they didn't have anything big enough for us to bring him home.  We buried his ashes right next to Razz...we had a short service with family, friends and neighbors. 

 

We were now petless...

I need to clarify some things.

 

I do not write about our journey because I want sympathy or pity.  I have never wanted sympathy or pity, from day one of Cliff's journey that has been my number one "rule".  Cliff would not grow up being pitied or asking for pity.  So please don't think that. 

 

I have always put my experiences on paper, I just have never let anyone read them.  I think I write my blog because it is an outlet for me.  I have always been the strong one.  Always the one in the family that everyone turns to in time of need.  I have never been able to express my feelings for fear if I put my guard down something else would happen and I wouldn't be able to handle it.  The only person I let "in" during Cliff's early years was my friend Kim and I think that is because we both knew how the other was feeling.  She is gone now, so maybe that is why I feel the need to write my story.  Maybe I am looking for someone who "knows" what I have gone thru -  am going thru.  I do know I am not looking for someone to pity me or my family.  I don't mean to be blunt but i hope my point is made.

 

With that said I will clarify a few other things.   

 

I don't talk about Anna much in my blog:  We have tried to keep her life as normal as possible, growing up around a hospital is not that normal.  I love her dearly and we are very, very close.  Her blogging time WILL come.  She is a beautiful young lady...her inner beauty is just as breathtaking.

 

My husband and I have leaped great obstacles.  We were married very young...we had a disabled child...we have had a lot of grief in our lives...we have had a great financial burden for 22 years.  We have been married for 23 years.  We have been best friends since we met, almost 26 years ago (Feb. 15 1980).  He deals with his grief different than I deal with mine.  He has always been there when drastic things have happened but he doesn't do hospital stays very well.   He would rather work his grief away.  That is OK.  We have our happy little medium. 

 

My whole life has not been grief.  I have had some fun times.  My youth was cut short but I have many friends and many wonderful memories.  I can't remember alot of them in great detail.  ummm.....I know that I have gone to the Octoberfest beer garden every year since I was 21,  I wouldn't miss the Blue Bird during Fort Vallonia Days.  Those are two more "rules"; Cliff can't be sick or have surgery the first or third weekend in October.  We have had many halloween & new years parties. 

 

I like to have fun.  Even during hospital stays we try to make the most of it.  Cliff was in our county hospital for halloween once.  The pediatric unit - maybe 6 beds and 1 nurse - was on the same floor as the surgery unit.  I took bags of candy around and told the nurses and patients I would be bringing my kids trick - or - treating.  That was one of the most memorable halloweens on record.

 

I am writing this blog because there have been some remarks made about how all I want is pity.  Do I have other children? - I never blogged about them or my husband.  My life must be miserable and full of grief. 

 

I LIKE who I am.

I LIKE how my son has the best outlook on life,

and yes I LIKE how my daughter really "SEES" other people because of her brothers situation.

 

I love where my life has led me; it has been a tuff journey but you learn to make the most of it.  I learned years ago that life wasn't going to stop just because I had something major going on in mine.  I could have sat down and let life pass me by, I would have had every right to sit and woller in self pity.  But what kinda of life would that have been....?

 

I will have no more negative remarks about pity, sympathy, or my showing favoritism toward my son over my daughter...I WILL delete them.

 

To my fellow blog dorks...I thank you for reading.  I love the strenghth that we give each other.  There are those that have alot going on in their lives and I really feel that we give them support thru our kind words...thru our humor...and just by being us.  Heck we even have a possible romance blooming. 

 

: ) Chris

 

 

The next 4 or 5 years were wonderful...free of surgery and any major illness. 

 

Cliff was able to develop many new friendships.  He became very active in school...manager of the basketball team, neighborhood hockey.  Those middle school years he learned new independence. 

 

Somehow we got on the Rehab hospital of Indiana's mailing list.  We were able to find special needs clinics almost every month.  Cliff learned to play tennis, hockey, basketball, archery.  We went water skiing, snow skiing...you name it we signed up for it.  Everything was falling into place for him.  I think those were some very critical years.  Those years molded him into the independent, fun loving person he is today.  He was learning he could do anything he set his mind on.

 

Through one of those clinics we learned of a junior wheelchair basketball team starting up in Hobart, Indiana.  Most games would be played in Chicago.  We went to the meeting and they wanted Cliff on their team.  Wheelchair basketball gives each player a classification according to their level of paralysis.  Players are classified as I, II, III with no more than 12 classification points on the floor.  Cliff was considered a quad. which classified him a I. 

 

It was very time consuming...a three and half hour drive just to Hobart to practice.  We made a deal with the coach and drove up once a week for practice.  When the games started they were played as tournaments.  We would leave on a Friday night and get home on a Sunday evening.  We did this from Novemeber to March. 

 

Cliff's team the "Rollin' Rebels with a Caws"  (Chicago area wheelchair sports) was very good.  They were so good we were able to travel to several states.  Cliff made a lot of new friends and .... he had colleges looking at him.  He was only 13 to 14 years old.  We were looking at a full scholarship. 

 

The Junior Wheelchair Basketball National Championship was played at Carbondale, IL. so several relatives were able to go watch him play.  You had to qualify at a regional tournament to be invited to play in the National Championship.  There were very good teams there from all over the U. S.  It was very exciting. 

 

They made those kids feel so special.  You felt privileged just being there.  Lots of bonding time for players and families.  You weren't there just to watch basketball...you made lots of wonderful memories.  Our memories were even sweeter because Cliff's team "The Rollin' Rebles" won.  His team was the "Junior National Wheelchair basketball Champs".

 

 

Cliff's third grade of school he received the most improved student award.  His teacher gave a very touching speech that brought tears to the whole audience.  He didn't get to start his school year until November, he was on IV antibiotics for about three months, he worked very hard to get caught up. This award was much deserved. 

 

This was also the year that he and his "helpers", Monica (Mo) and Kathy, developed a special bond.  I was in and out of the school several times a day over the next months.  Every time I entered the school you could here them in the office - nurses station - laughing, singing, playing around.  Once they were shooting basketballs thru the doorway to see how many they could get to hit the outer door. They would call him to the office just so he could have a piece of cake with them during their break.  I can't believe he got passing grades with all the time he spent out of the classroom goofing off.  It is a bond that will last a life time.  Kathy followed Cliff to the middle school and high school even though she was not considered his "helper" anymore.  She left the school system soon after he graduated.  Mo quit the school right after Cliff left the elementary school. 

 

The summer following Cliff's "big" hospital stay more surgery was scheduled.  For kids with special needs their summers and any breaks are full of appointments, tests, and any needed surgery. 

 

Sometime during the school year he started having more bladder problems.  We tried different medicines to help "dry" his bladder.  He would have severe reactions.  He even came close to having a heat stroke while taking one of them.  Nothing was working.  He was out growing his bladder.  He needed another bladder augmentation, they would have to enlarge his bladder again to stop the spasms.  They compare the spasms to a woman in labor - only it does it all day every day.  This time they would also put in an artificial sphincter.  (The sphincter is what you squeeze when you hold your pee) This surgery was especially hard because he had already gone thru it once and he knew what was coming.

 

We had looked into other options but this seemed the best choice.  We could have let them sever the nerves to the bladder but this meant that Cliff would never be able to have sexual intercourse or have children.  It would have been a much easier operation but that was not my choice to make.  If this is something Cliff wants done in the future it is a choice he can make.  I do hope to have grandchildren one day!!

 

I don't know if I have mentioned this before but Cliff has hot/cold reflexes.  Which is a pain in the ass.  Cliff likes it because he will sweat and this tells him his bladder if full and he needs to cath.  His legs will jerk and kick when he needs to change positions.  He has a name for his legs - whoa nellie and down boy.  If any part of your body gets caught  between his legs (especially at the knees) they put the death grip on and you have to work really really hard to pry them apart. 

 

Funny story - Cliff was recently at a party with several of his friends, a cousin and her new husband (Nick) when his legs started in.  Nick (who was feeling pretty tipsy) was sitting by Cliff, they were playing cards, and Nick asked Cliff what was wrong with his legs "why are they moving".  Cliff told him "it's a miracle" he was getting feeling in his legs and it was very painful.  Nick stood up announcing the miracle to everyone.  He was so excited until he found out that Cliff was just joking.  Now he gets very embarrassed when he sees whoa nellie and down boy do their thing. 

 

Anyway going into the surgery was really hard because Cliff knew what was coming.  I knew what was coming.  He was very angry with me.  This is the hospital stay when I received a nurses important observation  -  Cliff was really angry with me one day (more anger than I thought a 10 year old could have) and his nurse told me that he took his anger out on me because of unconditional love.  That no matter what he did or said to me he knew that I would love him - forever.  And she was right.  I have used this outlook to get by on several occasions.  Cliff is by no means an angry person but there have been times during different recoveries that he has been upset with the way things happened.  (Future blog)

 

The surgery on the most part was a success.  The recovery was about the same as the last.  Two weeks in the hospital, only an ounce of ice every shift for a couple of days, fever, cath every 4 hours around the clock for several months.  He had a different surgeon this time.  The surgeon that did the first augmentation was the man who developed it.  He is now traveling around the world teaching the method to other doctors.  The man who took his position, Dr. Rink, came highly recommended.  He is now one of our favorite doctors. 

 

Things are finally going Cliff's way....?

 

 

 

 

 

I would like to finish this story in this blog so it may be a long one.  Sorry!

 

The first week Cliff was at Riley their social service personnel came to talk with me.  Our insurance had maxed out.  He said not to worry they would work with us.  Yea right how was I not going to worry! 

 

The bill was so tremendous we are still paying on it.  Sure we were able to get some grants, our friends had a fund raiser, we took out a second mortgage on our house.  -Mistake-  We are now in the process of medical bankruptcy - please do not judge me for this is not the end to our seemingly never ending story.  Both times our insurance maxed out my husbands work voted to go with another insurance company so we could have insurance.  (yea! Pepsi)

 

When Cliff was brought to the school age unit he was in an airbed (noisy thing).  We could only roll him slightly from side to front and to top it off they had punctured his left lung during surgery.  That first month was touch and go.  Can't remember a lot of it.  Sitting by his bed.  Going downstairs to smoke.  (I quit 4 1/2 years ago - 35 pounds ago)  Doing word puzzles, reading.  Eating.  A lot of alone time.  The rest of the family had to work, my husband included; someone had to pay the bills.  They would take turns coming up on weekends. 

 

We were able to get a room at the Ronald McDonald house.  So when someone came up they would bring Anna with them and I could spend time with her outside the hospital.  This was very traumatic for her, she was only two.  (I couldn't leave Cliff.)  Those three months were torcher on my little girl.  She was very much a mommy's girl afterwards to the point it was unhealthy.  Will talk about this in another blog.

 

There were several times when they thought Cliff's heart would fail.  He started throwing up what looked like coffee grinds - dried blood.  He was bleeding.  Everything they were doing to try to save him was wearing his body down.  

 

There was a young intern, "Dr. Coz" he called himself, a wonderful person, one of those that you knew would make a very good doctor one day.  Cliff was waiting to go to surgery to have a central line put in but he was on a 24 hour waiting list for OR.  The powerful meds and the nourishment product were deteriorating his veins.  Dr. Coz was there to keep Cliff's IV's going.  He stayed in our room for the next 24 hours.  He was our savior.  He became a dear friend.  

 

Nurse Linda was Cliff's primary nurse.  She had been his nurse before so we were very familiar with her.  Cliff liked her and she was very fond of him.  She is now a pediatrician.  And a very good one.  Yea!! Dr. Linda.

 

At Riley the children have the run of the hospital and Cliff knew this.  That is how I knew he was feeling better, he asked to go for a walk.  It had probably been about 5 weeks since he had been out of that room so we were happy to oblige.  We took one of the old wooden wheelchairs, stuffed it with pillows, attached all of his equipment and off we were.  (very slowly, it's not easy pushing a chair with IV poles attached)

 

His favorite thing to do was ride the glass elevators.  I would put him inside the door (I would stand in the corner), when someone would get on he would ask them what floor they needed and when they would get off he would tell them Thank You for choosing his elevator.  Most people thought this was cute and would give him a tip, he would give them a high pitched giggle. 

 

Slowly over the next several weeks things started coming out, he didn't have so many IV's, monitors, N-G Tube, his ET finger, oxygen he was becoming more mobile.  I had my little boy back. 

 

The hospital has a library we could pass time in, he was able to start the in hospital school program and we would take strolls outside, anything to pass the time.

 

Towards the later part of his stay he was able to have room mates - he had been in quarantine the first month.   We had several kids with cystic fibrosis (CF), one little boy lost his leg to leukemia; there was one with colon cancer.  (Boy did I feel fortunate)

 

Our favorite roomy was Billy.  He had CF.  He was in the hospital quite frequently for "tune ups" as they would call it.  His stays were two weeks at a time.  His mother was a single parent so she moved close to the hospital and was working nearby.  She would come by the hospital right after work and stay until it was time for her to go to bed.  Often I would give her money to bring us back movies, games, pizza anything from the outside world.  For two weeks I had someone to have frequent, long, uninterrupted conversations with.  Cliff had a friend.

 

Cliff received boxes and boxes of get well cards and banners all of which we hung in his room.  My sister-in-law took our video camera to Cliff's school and taped his friends.  All his classmates gave him a video message.  Showing him things in the classroom they had been working on throughout the year.  Cliff loved it so.  We did the same for them.  We taped Cliff and some of the people that were in his life at the hospital.  His school room (the unit lunch room), his noisy airbed, the library, the glass elevators.

 

When Cliff had the surgery in May to put the rods in Dr. Lyndseth told us some of the statistics.  He has never had any of his kids get an infection (Dr. Lyndseth retired Dec. 2004 and Cliff was his only kid to have his rods get infected), these rods will not break (yea right that will be another blog), once the rods are put in his spine will not be able to grow (proved them wrong on that one, yet another blog).  We often see interns and residents that will ask if Cliff is "the" Cliff Sommers that they have studied.  They tell him they are honored to meet him, that his case will be studied for many years.  He beat the odds.  He changed the statistics.

 

Cliff could have come home several weeks earlier, they wanted to transfer him to our County hospital, but I refused.  No one could ensure me that if we went to County the dip shit of a doctor wouldn't be on call for Cliff.  

 

When he did get to come home he was on IV antibiotics.  It was an experimental idea.  The meds were delivered frozen several times a week.  He had to have them every four hours around the clock.  The system worked like this:  Take one from freezer put in frig, take the one from frig put on counter, take the one from counter and administer that one to central line.  It came enclosed in a plastic ball and would sit on his lap.  It took one hour for the meds to finish the process, I would then start over in three hours.  Great idea!!  It worked very well for us.  I don't think it made it past the experimental phase because I know of no one who has heard of this. 

 

Cliff was in the hospital just shy of 3 months.  A few days after Cliff came home our town had a "Welcome Home" parade.  There were fire trucks, clowns, balloons, banners, and many many people.  Lots of hugs and tears.  We live in a very small town of 3000 mostly wonderful people.  I have always been known as Cliff's mom, no one knows my name but they know who he is.

 

 

Cliff's orthopedic surgeon was out of the country.  The doctor that would be doing the emergency surgery on Cliff came into the waiting room to let me know what was happening.  This was the same waiting room where our journey began; where I heard those words...your son's spine is grossly deformed.

 

He was telling me (the family still hadn't arrived) they were preparing Cliff for surgery.  He was in very critical condition.  My heart sank... They would be removing the rods.  My heart sank deeper... They would be inserting irrigation tubing.  From neck to tail bone, he would have one tube spraying saline and one tube suctioning it out.  They would be leaving the wound open.  I thought I was going to pass out... I had never heard of such a thing.  How horrifying leaving a wound open.

 

My husband and mother finally arrived.  (the rest of the family had other plans; they didn't know how critical Cliff was)  I tried to tell them what was going on but all I could think about was how scared Cliff looked when they took him thru those surgery room doors.  His eyes were saying mommy help me.  He was too weak to cry.

 

I cried long and hard when my husband hugged me, I collapsed in his arms.  I was exhausted and so very scared.  We sat and waited.  I don't know how long this surgery took.  I know it was well past dark when the doctor came back in to talk with us.

 

He started by telling us how upset Cliff was when they told him they would be removing his new rods.  He made such an impression that they promised him they would do everything they could in order for him to keep his rods.  They were trying to make a very sick scared little boy more at ease.  And they did .  They left the rods in.  So therefore they closed most of the wound.  The upper portion of his spine, where the infection was most prominent, was left open.  This made no sense to me... I kept thinking that would cause more infection.

 

They had to be sure they cut all the infection out.  The Doctor said the infection had started growing up into the brain stem.  If we had waited any longer the damage from the infection could have severely affected his brain.  (I tell Cliff that is what is wrong with him; his brain is infected - bad joke)  This made me very angry at our regular family doctor.  They did not know if the infection was anywhere else or if it had entered the blood stream.  If it had entered the blood stream this would be very bad for his heart and organs. 

 

He said it was a very fast growing infection but wanted to know why we waited so long to bring him in.  When I told him about what had transpired in the last few days he sat quietly, his only comment was that Dr. Conway probably saved his life by putting him directly in the hospital and starting the broad spectrum antibiotic.  It slowed down the infection.

 

Cliff was taken to ICU and the infectious disease doctors were called in.  They went over all the tests that had been done in our county hospital and read the reports.  They performed their own tests and spoke with the doctor that performed the emergency surgery.  It didn't take them very long to come up with a diagnosis.

 

Staff.  It was an infection you get from hospitals.  An infection he probably had from the surgery in May.  An infection that would lay dorment for weeks, months and sometimes years.  They said that was probably why he ran a low grade fever all summer.  When it started growing whamm, it is very aggressive.   They would have to make sure it was completely gone so it would never come back.  This was just the beginning of a long haul.

 

He would have every kind of doctor looking after him.  His neurologist, neurosurgeon, urologist, orthopedics, they would bring in cardiologist and doctors I had never heard of before.  His estimated time in the hospital was 3 months.  3 months.  3 months I have a little girl at home.  What would this do to Anna.

 

It was a wait and see game now.  Hope and pray he responded to the antibiotics, hope and pray the infection hadn't entered the blood stream.  Hope and pray they could get ALL the infection.  Hope and Pray...

 

Throughout the summer Cliff felt pretty good.  He loved his rods, he liked how straight he sat, and he had better balance.  His fever stayed right around 100 degrees all summer.  They did a lot of tests to find out why, which showed nothing.  They thought they had  messed his autonomic system up with all the work they had done on his back.

 

The MRI first came to Riley when Cliff was around 7.  He had one at that time, I had to sign my life away because it was all experimental.  (That is how we found out the cyst in Cliff's spine is from C2 - T4)  They couldn't do one now because of the metal rods.  If only he could have had one done during those early summer months.....

 

It is August now and Cliff's first day of third grade.  We had him tutored during the summer to make sure he was ready for school.  I am home with Anna, who was 2 at the time.  I had the flu - aching, vomiting, fever all those wonderful flu symptons. 

 

I recieved a call around noon from the school nurse.  Cliff was in the cafeteria with his head on the table and wouldn't move.  He did not want anyone to touch him, not even one of his aids, Monica and Kathy, they were there to help him.  He loved them both (They are a blog in themselves). 

 

Feeling very crappy I loaded Anna up and off to the school we went.  When I arrived Cliff was still in the cafeteria with his head on the table.  I touched him he was burning up. 

 

We went straight to the house, I was thinking he had the flu.  He started throwing up (Cliff had never been able to throw up so this alarmed me).  I gave him a fever suppository.  This was all around 12:00.  His fever was 104.  By one his fever was 105 and I was sponging him. 

 

I called our doctor, who was not in so we got the new guy, Dr. Conway.  He knew a little about Cliff, we had seen him for minor situations.  Even though his symptons matched mine, with his fever that high he did not want to take any chances so he asked that I meet him at the hospital (our county hospital). 

 

I had to drop Anna off at my sister-in-laws and told her to get ahold of my husband.  By the time we got to the hospital it was around 2:00 and Dr. Conway was waiting for us in the emergency room (Wow I like this doctor, that really impressed me).  Cliffs fever is now 105.5.  He was very lethargic.  He DID NOT want anyone to touch him.  He was still throwing up.  He said he hurt even where he couldn't feel.  ??????  Dr. Conway admitted him immediately and started him on a very broad spectrum antibiotic.  He took lots of blood and x-rays. 

 

We made it thru the night without anything out of the ordinary.  His fever didn't get any higher but it didn't break either.   Dr. Conway and I were very concerned.  He still did not want anyone to touch him, this was so unlike Cliff he was a cuddler. 

 

During his second night a rather large knot came up on Cliff's back.  It was about the size of my fist and soft, like it was filled with liquid.  His fever was very high, he was very lethargic.  He was not throwing up anymore...there was nothing to throw up.  I can't remember the exact time but it was early evening, after office hours. 

 

The nurse called the doctor.  Dr. Conway was not on call our regular doctor was.  He would not come to the hospital.  Our regualr doctor the one that delivered him, the one that new every medical thing about him, would not come to the hospital!!!  The nurse pleaded with him.  He would not come!!!  A couple of hours later another knot appeared.  The first one was bigger, the second one was growing.  She called again begging him to come.  She pleaded over and over.  She was in tears.  He refused to come!!!  She sat with me and we prayed and I cryed all night.  I did not know what to do.  I just wanted someone to help us.

 

Our county hospital works so different than Riley.  It was at the time very small.  I don't think the emergeny room doctor was anything more than a physicians assistant.  At Riley a whole team of doctors would have been there in minutes.  I was very tempted to take Cliff out of there and take him to Riley myself.  I was afraid. 

 

The nurse had an emergency page in for Dr. Conway.  The minute he stepped inside the hospital he would be told to come to our room. 

 

When he did arrive and he heard about the things that had transpired throughout the night he was very, very angry.  He had an ambulance there in minutes.

 

When we arrived at Riley the doctors ran to the ambulance ready for us.  By the time they got him thru the automatic doors they had a needle in his back and they were pulling out crap that was as green as grass.  They didn't even take him thru the emergency room he went straight to surgery.   My family had not even arrived yet.  I was alone...

 

 

I hope teacher doesn't get mad I am turning my assignment in two days late

 

4:00 am - woke husband

 

4:09 am - woke husband again

 

4:18 am - woke husband again....

 

4:27 am - kicked husband out of bed and shut off his alarm (he is 43)

 

6:00 am - woke Anna

 

6:09 am - woke Anna again

 

6:18 am - pull Anna's blankets from her, while she screams and kicks I pull her from her bed so she can get in the shower (she is 16)

 

6:20 am - wake Winston so he can go out to do his business.  can't watch or he won't go

embarrased I guess? (he is 2)

 

6:45 am - I get in the shower

 

7:00 am - whisper to Cliff to get up.  He jumps right up and pops into his wheelchair and is off to the shower. (he is 22)

 

7:30 am - chat with the family while walking thru the house picking up.  need to find out everyones daily plan.  Anna has a game after school.  Cliff has school and a meeting afterward. 

 

7:50 am - off to work. I have to stop by big foot to get my polar pop (diet pepsi of course)

 

8:00 am - I walk in to work on time as usual...shewwww I work in the county assessor's office.  (please do not judge me)

 

8:00 am till 9:00 am - I usually catch up on gossip with the co-workers (there are 3 of us), but today the boss isn't coming in and Nadine called and said her grandson was sick.  So I do some blog walking instead.

 

9:00 am - break open a pack of M & M's (my favorite snack)  I quit smoking 4 1/2 years ago and have to do something to keep my sanity.

 

9:00 am till 12:00 - I better do some work.  Today I am transferring property ownership, rather boring but someone has to do it.  I get to sit and read deeds all day long. 

 

12:00 till 1:00 pm - Lunch yea!!!  I only live 3 blocks from work so I go home for lunch.   I am eating left over spaghetti for lunch today.   Let Winston out to pee (I can't watch or he won't go, I look out the window and watch anyway) throw in a load of laundry. Check on Winston he is laying in the sun on the porch.  Sweep the kitchen.  Let Winston back in.  Time to leave for work, polar pop stop first.

 

1:00 pm - back to work on time (I'm doin good today, probably because I know all my  blogger friends are going to be reading this)

 

1:00 pm - 2:00 pm - wait on an irrate tax payer.  His taxes are to high and he wants me to lower them now!!!  I calmly tell him to settle down and try to go over his property card.  (I really want to push our new panic buttom to see how quickly our county sheriff can make it to my office)  Taxpayer calms down and leaves, darn I didn't get to push the button.

 

3:00 pm - 4:30 pm - Transfer more property, listen to the girls in the auditors office grip because they are over worked.  They are just jealous 'cause they aren't as efficient as I am.  HaHaHa!!!

 

4:30 pm - head to volleyball game an hour and half drive.  John, my husband, doesn't get to go because we would be getting home late and he gets up so early.  I hitch a ride with a friend. 

 

6:00 pm - made it to the game on time...shewwww, Anna would be upset if I missed anything.  Eatting popcorn.  She played very well as always, I am so proud of her.  Our lady Braves win again...

 

9:00 pm - Home, looking thru fridge to see what leftovers John has left.  He ate the rest of the beans, I can have chili or spaghetti.  (I do a lot of cooking on the weekends because my weekdays are so busy).  John already in bed snoring logs.

 

9:20 pm - Anna comes in (it is so nice she has her license, I don't have to wait on her at the school) immediately grabs the phone and calls her boyfriend.  They talk until 10:30 or until one of them fall asleep.    They go to different schools and don't get to see each other thru the week, both are involved in sports.  Rival schools.

 

9:30 pm - 11:00 pm - Blog walking, tell Anna good night, pick up house.  Let Winston out, since it is dark out I have to stand outside with him (he is afraid of the dark and won't go out by himself)  but I can't watch so I turn my back.  Notice Cliff isn't home.  He was car pooling with a new kid today.   His cell is broke, waiting on it to be fixed, so I can't call him.  "Thinking".... should I be worried,  he usually is home by 9:00 to watch TV with me.  

 

11:00 pm - 12:30 am - More Blog walking, I am usually in bed by 11:00.  Waiting up for Cliff...getting more worried and more angry by the minute. 

 

1:00 am - Lay on couch and try to sleep. Doze on and off. 

 

3:45 am - Cliff rolls in...I don't know whether to get mad or hug him.  He new he was in trouble when he saw me on the couch.  "Sorry Mom, I am so sorry Mom."  He had gone out with some new friends from school.  Told him we would talk about it after I was off work.  GRRRRR!!!!! Kids

 

4:00 am - time to wake husband.  This is going to be a wonderful day, no sleep