Splashing Through Those Puddles of Life...

So the puddles in our life just seem to keep growing.  You better get your waders on...  there will be some splashing going on soon. 

Most of you already know that about 2 months ago while I was off during surgery I received Kherington's diagnosis letter from her visit with the Genetics Clinic.  They diagnosed her with spastic diplegia which is a form of Cerebral Palsy.  Unfortunately, we did not get the letter until about 11 months after it was sent and we did not know much about her care and therapy for the diagnosis. 

Well, as a follow up we decided, with the help of her Dr., to take her to Children's Hospital and set up a treatment/therapy plan for her besides the regular help she was getting daily at School.  If you don't already know, Kherington is enrolled in the Scottsbluff Public School Pre-School program and is under an IEP.  This helps ensure that she receives physical therapy as part of her education and any other therapy that they feel she needs as part of her development above and beyond what normal education requirements might be. 

While we were in Denver last week, she was observed by two different doctors for over two hours.  During that time they decided that they did not agree with her diagnosis.  They did not see anything that would make them believe that she had Cerebral Palsy.  They said she had a few things that were related to clumsiness, prematurity, and extreme flexibility.  One of the terms they used was hypotonia.  Other than that, I have no idea what they were talking about.  They said they didn't want to "label" her with Cerebral Palsy unless they were completely sure.  They looked at her MRI it was completely clear, they were convinced that it was NOT Cerebral Palsy.  So, although confused, I was a little relieved but not satisfied. 

Yesterday, we were given the opportunity to visit the Genetics Clinic again as a follow up for her first visit a year ago.  Well, what a whirlwind that was.  That doctor was angry.  ANGRY.  He was SO upset that the Denver doctors did not want to diagnose her correctly.  He showed me the specific signs of her disability, WHICH I had seen which is why I had taken her to the damn clinic in the first place.  Oh man I was angry.  He then proceeded to tell me that if she did not start having more severe therapy and more consistent therapy that she will be having surgery, and could possibly be wheelchair bound within 5 years.  He also said that braces are a high probability right now depending on what the therapist says.  However, according to Denver, she's just extremely flexible, premature, and will grow out of it...........

So.  What the hell.  How in the hell are you supposed to take that news??  Are you freaking kidding me right now?  The surgery is heel chord surgery.  Some cases are successful, some are not.  My sister had it and hers was NOT a success story.  Wheelchair bound in 5 years without therapy???  Braces???????  HOW DOES A DOCTOR MISS THAT!!!!!!!!!!!!!!!!!!!!!!!  Ugh I am so angry right now.  So she falls behind and doesn't get the help she needs because a couple of doctors who are supposed to be some of the best.  They just think she is premature and will "catch up eventually".  How could this happen?  I can't even fathom right now what would be happening if I didn't take the time to do the follow up at the Genetics Clinic and accepted Denver's diagnosis just THINK of what would have happened?! 

What a mess...  what a MESS.   Unbelievable.  Hopefully things will start falling in to place now.  She will get the help she needs and we will all move forward starting now.  It is a damn good thing I have my Mother and Father there to help me recognize and fight for my daughter.  Jesus help me stay calm and together.  For my family and for my kids.  We can do it, eventually we will get there.

OLIVER

Oliver.

What kind of friend are you anyway?

So we all say it, we all hear it...  If you need anything let me know :) ( big old smiley face at the end of the text) or a little hug at the end of your conversation.  Who really means it when they say it?  Well, I like to say that I am the type of person who means it.  I try to take time out of my day to personally text, message, or email someone if I don't have time to call them if they aren't feeling well or going through a tough time and say "Hey, hope you are feeling better." or "Hope your day is better today."  or "Hope you have a great day today."  On the same note if a close friend of mine is traveling I will send them a little message to let them know I am thinking of them and to travel safe. 

I really started thinking about this today on my travels home and I only have a couple of these friends.  Very few who even call me unless they need something.  I don't have anyone to cry with lately, nobody who gives me that time of day.  I'm not trying to be "that friend" but come on man...  I am one of the friendliest people ever I think.  Maybe I am too overbearing.  Maybe I am TOO friendly.  I guess.  It could be that I do too much for people.  Maybe it's because I try to buy their friendship by doing favors for them, and running them a soda if they need one or baking them cupcakes last minute for half price or some of the many things I do.  I guess I've always been that way.  I'm gullible.  I'll do anything to make someone like me.  It's a horrible habit to have.  Probably a disorder or something I'm sure.  If I saw a psychologist she would probably tell me what an idiot I am.  I'm not asking for much, just a simple text of hey how's it goin once in a while would be awesome. 

If you don't know by know I consider my close friends to be my family.  Once I build a trust with you, I let you in to my life and my children's lives and they develop a friendship with you.  They learn by what they see.  To me friends are family, I treat you the same.  But, like I said I don't have many close friends.  I'm  not going to say I'm going to stop, but I'm going to try to change just a little.  Sometimes it hurts.  Sometimes it feels like I'm being used. 

Then it comes to a weekend like this weekend.  Friends for 20 years.  We talk via text and Facebook and occasionally on the phone.  This happens with most of my friends from Wood River.  At least Shae, Crystal, Lance and Heather.   We don't see each other forever.  Then we are together and it's like we never missed a beat.  We didn't even leave.  We never stopped talking, like I just talked to you yesterday.   Nothing is expected.  I can cry with you, I can laugh with you and I can hate you and you can hate me.  Tomorrow it will be all good.  Why is it so different and so hard to make such good friends once you leave?  Don't get me wrong.  I have my Nig, and I have good guys that I have met in the past couple of years and they are so supportive but since they travel and live out of town I rarely see them.  When I do though, it is something special. 

I guess what I am trying to say is Thank You.   Thank you to those close friends of mine for being the kind of friend that I try to be.  I'm sorry if I am overbearing and if I seem to push myself on you.  I guess it's just the way I am.  I don't mean to come off as a bitch.  I am a much better writer than a talker.  So if it's just a text you get from me, I apologize.  Also, I'm a forgetful person.  I try, I get busy, my kids are consuming, and then I hit the couch and I zone out on the TV.  I try to answer texts, emails, messages, but...  somewhere some get lost.  For that I apologize but it's me :) 

The good thing is.  I'm back to cupcaking.  Something I love.  Markets start in a couple of weeks here and go until April with my sister.  I'm going to try my best at Les Mis auditions in a couple of days.  Even though I have to plunk it out on my own on the piano, I'll hopefully get it!  I'm so super excited and nervous about it.  Les Miserables is my most favorite musical of ALL time.  I studied it in High School.  I saw it live twice.  I recorded the 20th Anniversary and watched it probably 5 times.  I had the CD's on my desk at work forever and would listen to them intently when I had lots of programming to do.  Oh I'm just rambling now but I'm so super excited about it!!! 

So as the weekend wraps up, I'm glad to have been a part of the celebration for Travis this weekend.  It was great to see the close friends that we have all gathered up in Gothenburg to wish him a Happy Birthday.  I just can't wait until the next birthday.  Who knows what we will come up with next!!

Giant Raindrops in the Puddle of our Life.....

What a whirlwind month this has been for us.  On July 15 as you may have read in my previous blog, I went in to finally get answers and scheduled surgery for yesterday, the 28th of August.  Unfortunately the scheduler was not friendly and very unorganized, so it was very rushed.  I was forced to get all of my pre-op appointments in within 2 days and when I went in to my anesthesia appointment they had to "google" my MTHFR disorder.  I was very uneasy going into the surgery yesterday, however it was successful. 

My surgeon was able to find pieces of endometriosis growing on the outside of my colon, my bowels and a small amount around my uterus.  She took whatever pieces off that she could and then she sent that off for testing, she has also informed me that she knew of a medication I could be on with the blood disorder/mutation and we should be able to treat it to prevent it from coming back.   After the surgery I was in a lot of pain, I tried not to take the pain medication at first but I learned quickly that was not the smartest decision.  They also said that the reason that the pain would take me almost to my knees each month was because where the pieces were located.  Hopefully this will help with the pain now, she said it will most likely not be immediate but it should subside eventually.

Now, on to bigger things...

For about a year and a half we have been struggling with wonder and doubt of what may be going on with Kherington.  We have been to clinics, doctors, through MRI's, cat scans, blood tests, therapy, IFSP programs and she is now in an IEP program.  Over the summer we would go to the pool a lot and while swimming she of course would not wear shoes.  It was during that time that I started noticing her feet.  Without shoes or any support they curved inward when she would walk almost to the point where she was walking on her ankle bones.  At this point I was done dealing, I was done messing around.  So I started making phone calls, my Mom started making phone calls.  Together we accomplished a lot.  We were able to get through to Shriner's and find out about their programs.  We were also able to find out that Kherington was in fact diagnosed with something in November of LAST YEAR but we were not given a copy of the letter with her diagnosis.  I am sure this was not on purpose, but at any rate we didn't get the letter.  Today the letter came.

Her overall diagnosis was Spastic Diplegia of Prematurity. 

Spastic diplegia, historically known as Little's Disease, is a form of cerebral palsy (CP) that is a chronic neuromuscular condition of hypertonia and spasticity — manifested as an especially high and constant "tightness" or "stiffness" — in the muscles of the lower extremities of the human body, usually those of the legs, hips and pelvis. Doctor William John Little's first recorded encounter with cerebral palsy is reported to have been among children who displayed signs of spastic diplegia.
This condition is by far the most common type of CP, occurring in almost 70% of all cases.

Wow.  Just WOW....talk about a shock.  I was not expecting that.  In my heart I have always known that she had Cerebral Palsy.  However, I was expecting that this letter would be vague and have no diagnosis.  My heart sank instantly.  I did not cry, I just sat staring at the letter.  Knowing I had to be tough for her, thinking of the long road ahead...  remembering.

Several of you do not know this but my sister Becky also has Cerebral Palsy.  Growing up with it and seeing it for the past 35 years of my life I knew that Kherington had it. I would see signs of it in her facial expressions, the way she would grip her hands, her teeter in her walk, the way her feet turned.   There were so many similarities between Kherington and Becky that I could not dismiss it.  I would not dismiss it.  Becky's case was far more severe than Kherington.  Kherington is walking AND running on her own.  We were never that lucky with Becky so we know that this should be a good sign.  Kherington is reaching her milestones on her IEP very quickly, however she is a long way from her goals.  She has A LOT of work to do and it will require intense physical and occupational therapy.  Our next steps will be to get help.  We will apply to get her disability recognized so that if our insurance doesn't cover something money will not be the reason she does not have what she needs.  Then we will go to a cerebral palsy specialist and take it from there. 

There are going to be long roads ahead but I feel very, very fortunate that my family is strong and supportive about this.  They are knowledgeable about her condition and that is something that will help all of us on the path we will travel.  When I first started this blog I titled it Raindrops in the Puddle of Life.  Well, this is a giant raindrop in our puddle of life.  We will stand strong together and pray.  We will get through it as a family.  With the support of them and the friends who are there for us nothing will hold us back.  <3  She will prevail and she will be everything she can be and more!

The Hand That Life Deals Us

Every single day we are forced to play the hand that life has dealt us.  Well I have not been playing that hand very well and I apologize.  Today I can finally, FINALLY explain somewhat why I have been such a grouchy old bitch.  (Besides my normal personality of course!)

So, over the past year I have gone back and forth with my doctors about my gall bladder.  I have had the HIDA Scans, the ultra sounds, the blood tests, tried eating the different foods, the pain killers...  ALL of it.  Overall it was decided that my gall bladder was abnormal but not abnormal enough to remove so I was told to deal with it.  With pain killers.  Thankfully I have an AWESOME Dr, who doesn't over prescribe the painkillers.  He wanted the gall bladder to come out but could only do what the surgeon told him to do.  So...  that was that. 

Well, over the months (yes months, this started last August) the pain was getting far worse.  Not to mention the pain was on the wrong side of my body.  I was a complete and total bitch to anyone around me for about three weeks out of the month.  After talking to Leon about it and thinking about when these stabbing pains were happening each month I decided I thought it had to do with my woman calendar (I'm trying to be less gross about it!).  So I called my doctor and told him I thought I had some cysts and without asking questions scheduled me for some ultrasounds.  The results came in and I had no cysts.  Good and bad.  Damn it.  Still no answers.  The one thing they did find was varicose veins in my pelvic region.  This was caused from the severe DVT I had back in 2009 that started in my abdomen.  They said nothing can be done about that, just again, pain killers.

Well I was about tired of the pain killers answer.  So, finally the Dr and I had a heart to heart.  We tracked it all out on the calendar because at this point I had been writing down how many days of pain, where there was pain, when I had to take a pill, when I even had bowel movements.  It was that bad.  I had to track it all.  At that point he had it down and he laid it all out on the table.  He said he was certain I had Endometreosis and that he was sure it had spread into the organs on the left side of my body.  If that was the case I would be going in for a full hysterectomy.  Well.  Fan-FREAKING-tastic.  So we go from gall bladder removal to 6 weeks off work.  Nice.  He did say depending on the intensity of the endometreosis the surgery may not be so horrible and I may not miss that much work so that gave me some hope.

A month later I finally got in to see a gynecologist.  She is the one who helped my doctor do the emergency C-Section with Kherington.  I do not trust many doctors out here but I trust her.  So I waited until she was available.  After long conversations and one feel that about threw me off the table in pain she was convinced without any tests.  She has said for now we are going with outpatient surgery.  She will be exploring to see how deep and spread out it is.  Laproscopic is her goal, she said it is common but all of my factors make me high risk.  (AWESOME YAY!)  The MTHFR that I have is a uncommon string of MTHFR and so with that I cannot have any hormone treatment at all.  I have to have blood thinners during the surgery because they are worried about me clotting, and if it is spread I'll be in overnight and we may still be dealing with hysterectomy.  If we do hysterectomy I'm still on no hormones.  (Ya'll better watch out if that's the case LOL!) 

SO...  with that said I'm sorry I'm such a bitch lately.   Most likely I'm in pain and I'm smiling through it.  I've been feeling like shit for about 11 months straight but I'm dealing with it.  If I've canceled plans on you I apologize.  I am glad that we finally have answers.  It has been hurting me for a long long time.  I am so glad that I have Leon here to support me and accept me even when I want to shoot him in the face because my pain is so horrible and I just want someone to hurt as bad as me.  I know this is a common thing and no one should feel sorry for me.  I just want people to know I am sorry for being such a crab lately! 

Thanks everyone for everything you have done lately!!

That's my job

So, what do you do?  A lot of people ask me that....  I'm here to tell you that and probably a WHOLE lot more.  That's my blog.  More than you want to know right?  :)

So over the weekend a good friend jokingly poked fun about me not doing my share and how a little manual labor wouldn't hurt me.  Well, unfortunately that little poke hurt more than they knew so I'm here to explain why.  Why it hurt me so deep, and why I am constantly freaking out about my job.  OH and by the way I'm not here for people to feel sorry for me, I just want people to understand when I get pissed about comments of this nature...

I have a strong work ethic.  My father has always taught me to be a hard worker.  I grew up on a farm, feeding calves and gathering eggs at age five and six.  When we moved off the farm and to Salt Lake City I was lost.  I hated it there.  I missed Nebraska with everything I had and would cry to go back "home" all of the time.  When we finally moved back my Dad went through hell trying different jobs and it was horrible for our family.  He finally did find the right job and started at the bottom of the totem pole and worked his way up.  He never called in sick, he worked graveyard shifts, he worked his ass off.  He did what it took to support his family.  Work ethic.  He taught me what it meant to work and respect your job and be thankful that you can live in a country where you can be free to work for a wage and not forced to work like a slave. 

I started working at age 11 and have not stopped.  When I was 11 I worked harder than some adults do now!  I worked in the corn fields.  A lot of the people out here don't even know what rougeing or detassling is but it is damn hard work.  You get your ass up at 430 in the morning every morning.  INCLUDING Saturdays all summer long.  And you work out in the corn.  For the first half of the summer you carry a hoe with you through the fields and cut wild corn and dig out weeds.  The second half of the summer you detassle.  Sometimes it is raining.  Tough shit.  Sometimes you are walking through mud.  Too bad.  Sometimes you are walking through stinky, irrigated rows that are moldy water.  Oh well.  You get corn rash, you get corn cuts on your face and neck, you get sun burned and dirty, tired and sore.  It's manual labor alright.  More than a damn 11 year old should probably do that is for sure.  I did that until I was 15 because I couldn't get a job anywhere else legally.

During the summers when I was 13 and 14 I also mowed yards in the evenings for the elderly and disabled and got paid by the State of Nebraska.  Sometimes the old ladies would give me a five dollar bill to fill their bird baths or extra money to mow the weeds by the flower bed because they knew there were snakes in that garden.  I did this on top of detassling.  (two jobs at age 13 and 14 in case you lost count)

When I was 15 I had my first real job.  I took on Salad Bar Prep and Table Busser at Dowd's in Alda!  OH those days were fun!  It was seriously one of my favorite jobs.  I kept that job until I was almost 17.  While I worked there I also worked at Valentino's.  (yep 2 jobs again)

After working 2 jobs at once for those years and once I started really getting involved in stuff in choir and boys (lol) I started working one job and went to ITI.  Telemarketing but man it paid well!  During the summer of my junior year I worked at the hotel in Wood River and then I took it on Full Time after my Senior Year and started up 2 jobs again.  I just couldn't give up the money.  Well pretty soon I started getting burned out on working so much and started blowing off the good job and got myself fired for the first time ever.  I was heartbroken.  What an idiot!  I thought for sure my father would kill me but at least I had a backup job :) 

I tried to go to college but that just didn't groove with my work schedule.  I was working way too much to go to school so I had to quit about a year and a half in.  I tried to work different jobs in college to make the school schedule work but I just couldn't do it and pay my bills.  I wanted my new car too badly and I wanted the money.  I just couldn't part with it.  My job was too important to me at that time. 

Every job that I have had I started at the bottom.  I am only 35 and have already worked for 24 years with probably 8 months off total in that entire time.  I was never given a job without applying for it and fighting for it.  I have worked hard for everything that I have.  When I was laid off from Aurora I was devastated.  I worked hard to get to where I was.  I earned that position dammit.  I didn't know what I was going to do.  I was scared and lost all at the same time.  Now I have this job.  My job at housing.  Starting at the bottom, again.  Who knows where it will go.  All I can do is go in every day, work my hardest and see where it leads.  When I get home I am DOG ASS tired.  I worked HARD all day.  It is not an easy job.  If you all see the word government in the job, don't assume it is easy.  I don't even want to eat when I get home.  I just want to sleep.  All the time.  I don't want to deal with my kids, my bills, nothing.  BUT I do.  If you see me sitting down for three minutes, don't give me a hard time just give me a break please.  I feel like I deserve it. 

Now.  On to this part.  YES I can take a joke.  But, sometimes jokes hurt.  We ALL know that.  Sometimes you just have to know why right?  So, that's my story.  That's my job...  that's been my job.  It feels like forever. 

Oh the life of a working baseball mother....

So we can all sit back and say.  What is she complaining about?  I do that all the time.  Well, I am sure you do, but I seem to catch the guff so I'm blogging about it :)  That's what I do best right?  I write my words out on paper...  or virtual paper as we have it...  and you all can choose to read it or let it go.  

As I'm sure you all know by now within the past 9 months Leon and I have had some MAJOR changes in our life.  I went from a job where I was comfortable, with a lot of time of and Mommy flexibility to a job where I was not quite familiar with what I was doing and no time off to begin with.  Things are gradually getting better, but it is still quite different than it used to be.  Leon is pulling a lot of Mommy duties and sometimes it puts him in a bad situation, but we sacrifice for our children.  Right?

The same goes with money, time and friends.  Number one is money.  True, 9 months ago I gave my kids everything they asked for.  Times have changed.  They don't get all of the new and improved gadgets anymore.  They get what they need and some special things based on behavior and special rewards or birthdays, etc.  Other things that some kids don't get that we do keep that some people might frown on is the extras as far as piano lessons, tumbling classes and traveling baseball.  Well, I am stepping on my soap box right now.  I will do what it takes to get my kids these things.  In my mind my kids need to be well rounded, and to be well rounded I will give them these few extra activities as long as they excel at them.  If Lawrence truly SUCKED at piano and hated it and was not putting forth any effort I would not waste my money OR his teacher's time.  It is something he likes to do.  He loves his teacher and pays attention.  Arts are something that will always be supported in our household and if I have to work four jobs to pay for them I will.  Traveling baseball...  yes it's expensive.  It's going to get worse.  We have seen nothing yet.  This pools over in to time as well.  I have spent the past two weeks helping his team with fundraisers, putting together sponsorship posters, going to tournaments, getting Lawrence to practices, emailing parents, all that fun stuff.  The team finally got enough money to get in to the tournaments and now we are trying desperately to get him some personal business sponsorships just to get his own traveling expenses paid.  Uniform expenses, traveling, hotels, etc.  It is an expense.  Last year it wasn't an issue, this year it is.  BUT we didn't pull him off the team because he earned his spot.  How could we tell him that we couldn't let him be on a team where he earned a spot?  SO, I'll be spending more of my time this week searching out friends and family trying to get him sponsored up for his Casper tournament.

Friends.  I am so sorry.  I have not been anywhere around AT ALL for the past few months.  Mommy life has consumed me.  Really though, I should not have to be apologizing.  If you are my true friend you understand that the life of a working mother is a tough one.  It consumes you.  I fall asleep on my couch every night with my head on my keyboard.  I don't remember the last time I was able to go to my actual bed before 11 pm without worrying about something that didn't get done that day or what I needed to ask the daycare about in the morning or if the budget got done for tomorrow.  It is really for the birds and not all that it's cracked up to be.  

So in short, let me just say.  If I didn't see your post, your blog, or your pin I'm sorry.  I just haven't had time and I hope you understand.  I try to catch as much as I can on my phone.  Baseball season will be over soon... (UNLESS WE WIN!!!!)  Then I can at least go to bed at a decent time :)  

Thank you for your support if you have committed to Lawrence or his team.  We'll have something for you at the end of the season.

 

I am nothing

 

So for the past month or so I have been feeling sorry for myself, in a deep depression.  I lost what I thought was a good friend, I didn’t get a job that I thought I should have, our budget has been getting worse and worse, it seems my life is slowly tumbling down hill.  No one seems to understand, I can’t quite get to that group of friends who are in the same boat as me.  I have been beaten.  A year ago I had it all….  A fantastic job, freedom with my hours at work, a whole HOUR lunch (oh my GOD what would that be like again!?) money to do mostly anything we wanted, friends who wanted to go do things and hang with us and our kids.  Fast forward 12 months.  Ya, not so much…. I have nothing.  I am nothing, I am a nobody.

What I can’t understand is what is it about this place?  What is it about this town?!  Back home I had friends.  I STILL have friends.  Friends that would move mountains for me.  Friends that don’t care if I can’t be there for every waking God Damn moment of their life but know that I will still be there if they call in the middle of the night just needing to hear my voice.  Friends who would jump in their car at 3 o clock on a Sunday afternoon to drive 4 hours and have a drink with me just because.  And you know what….  They don’t care that my husband is there or tags along.  They don’t care that my kids are here.  If my house is messy tough shit, they don’t care.  They will sleep on the couch and cuddle with my humping dog.  Why?  Because.  Because they love me for me.  These friends are guy friends, girl friends, friends that I have had for over 20 years.  But for some reason I can’t keep a friend here for a year?  How the hell does that even happen?!  This town is full of drama that’s why.  More than any other place I have ever lived in my entire life.  The saddest part is, that this place even is SO dramatic that the shit drags over into the workplace.  People are actually NOT hiring people because you are not part of the popular group!

I have one really close friend that I call every day out here.  She keeps me sane.  She’s my nig.  Her and her husband are some pretty cool peeps.  At least they are honest and tell us if we are stupid up front and don’t hide it or gossip it.  Seriously.  At 35 and 40 I would think I could be past that but, I guess.  Scottsbluff and Gering didn’t pass that…  the further west you go the longer it takes?? 

Well the point of this is, Saturday night a good friend told me something that kind of made me sit back and think.  He said, “Don’t let your job define who you are.”  Well dammit he was right.  Why should I let anything like that define who I am.  My friends, my job anything like that?  They don’t pick who I am.  I am who I am and no one will ever change that.  If you don’t like that, you can seriously EFF OFF!  Seriously…. 

Sometimes I stick my foot in my mouth and a lot of times people think I come off as a bitch but you know what I have feelings too.  I get tired of being the one who gets run over all of the time.  It ends now.  I am tired of taking the shit in this town.  I am no longer the newbie.  I don’t have to deal with your bullshit and I have plenty of others who I can spend my time with rather than wasting it on those who don’t appreciate me for me.  I am not going to beg for your friendship, or beg for a job…  I am who I am and a real friend or real employer should see who I am.  I am me.  I am somebody.  I am NOT nothing.