Don’t forget to stop and smell the roses…

So, you know that saying in life you always hear people reminding you, “Don’t forget to stop and smell the roses!”  Well, I’ve learned, that doesn’t apply.  Not only to me, but also to hardly anyone I know.  The last time I blogged was last July for crying out loud.  Since then, so many things have happened.  In our life, in our community, in everyone’s life.  It’s a whirlwind and you just get caught up in it and you don’t know where to get off. 

My kids are my life.  No matter what anyone may say behind my back, to my face, post anonymously about me on Facebook or on Craigslist, they are the reason that I survive and that I do my best at everything.  In August, during our not so fun trip to Shriner’s we were informed that our daughter has a condition with her hips that is pretty much with her for life.  It causes her hips and knees to rotate inward when she walks.  It worsens when she runs, causing some pretty severe issues with her posture and upper torso.  We learned that she could have some inserts in her shoes that will help her a little; she’ll have to go back every year at least once a year and have new fittings and eventually braces.  Around the age of 7, once she has really grown they’ll reevaluate her growth in the socket of her hip.  Not expecting any change they are predicting she will have a pretty major surgery, wheelchair time and major rehabilitation.  So, I’m sorry to all of you if our trip looked like we had fun.  There were circumstances we didn’t feel we needed to explain to EVERYONE.  We took the extra steps we needed to make her trip fun, since in the future she will not want to go there anymore.  I’m sure you would dread the word Minneapolis as a child if it meant you were going to go there and have surgery.  Think of it from a child’s eyes my friends.  I am using the word friends lightly here.  If you were truly a friend, I wouldn’t even be writing this.

  

The same week that Miss K went to Minneapolis, I started my journey in college.  I worked with my laptop on my lap in the car the entire way there, every night in the hotel while everyone slept and the entire way home.  I worked full time the entire semester, all the while selling our A-M-AZING cupcakes at the Farmer’s Markets every other week.  Bev is so awesome helping me sell, but I still bake them all on my own.  Leon helps me make frosting and I decorate them all.  We still sell out every other week.  While I was working, going to school and selling cupcakes Leon was working 2 jobs.  That makes for single Mom status 3 nights a week.  If baseball or church or dance fell on those nights guess where Mom was at?  So, guess what?  When I pulled off that 4.0 at the end of the semester, you are DAMN RIGHT I was gonna brag about it.  I WAS Wonder Woman!  Don’t ask me how I did it because I do not know.  I’m doing it still, but this time I’ve signed on for more credits.  I want to graduate.  If you read my blog at all you would know I make my education a priority.  I miss things; I don’t hit the bars every weekend during the school semester.  I get my papers done first.  I don’t get to go to get-togethers all of the time anymore but my real friends understand.  I’ve bettered myself already.  I’ve moved up in the world, got a new job and learned what it’s like to be treated like a human again.  Life is moving in the right direction again. 

Through the month of September after we had time to decipher what kind of toll these trips were going to mean on our family we came to the decision that we should trade in our paid off vehicle for one that would be more reliable.  We were coming close to mileage on it that it would not be worth much on a trade, it was coming close to time to buy tires for it again, and we would need something bigger to haul a wheelchair and luggage on those long trips if need be.  So, we sent our friend all of the information about our situation and told him how much we could afford to pay on a payment each month since at that time we weren’t paying a payment and he sent his guys to an auction to find exactly the car that would be right for our family and whatever needs might arise.  We are very lucky to have a great relationship with a local bank and a local dealer, however if you all can find a 2011 Nissan Pathfinder out there for $2000 or less point me in that direction!  Since, that’s how we bought the car according to my “friend” on Craigslist and my anonymous Facebook poster I want their dealer.  That is a hell of a deal!  They have connections!

I guess the whole point of my blog is not to inform everyone or to even stick up for myself.  I don’t have to do that for anyone.  It’s to just prove to everyone what we should ALL know.  People only put what they want others to know on Facebook.  Maybe I didn’t want everyone to know every detail of her Dr. visits.  Maybe it just hurt too much to type it all out, or maybe I just haven’t accepted it yet.  People’s lives look much different on social media than they actually are.  You may be happy on the outside but hurting on the inside.  Do I hurt on the inside?  Sometimes.  Not all the time.  I have a great support system.  Karrie, Jeff, Tami, Kendall, Ron, Shelby, Nick, Brandi, Bev, Hunter you friends are my FAMILY and I would be nowhere without my sisters Katie and Becky or my Mom and Dad. I miss Katie like crazy.  CRAZY.  I still cry when she goes home.  We still talk on the phone for almost an hour even though I call to just ask what size Isla or Ali wears.  One day it won’t be so hard.   For now, we all move forward.  One step at a time, one day at a time and eventually we will all get there.  It’s a new year.  A new us filled with new opportunities.  I won’t stop posting my life in pictures or complaining about people or things I can’t control.  That’s me!  For now, you get to see it all from my point of view.  If it’s not your cup of tea, don’t drink it.

A Girl Can't Be Tough All The Time...

     As you grow older and become an adult you learn to be tough.  You learn to take things as they come and build a broad shoulders.  Thick skin.  When you become a parent you learn to be strong for your children and hold back the tears.  Well, this Mom, Wife and Sister just can't do that anymore.  Not this week, not next week or the next after that.

     Right now my life is TOTALLY insane.  First and foremost I am devastated.  Absolutely devastated right now because my sister is moving to North Dakota in two days.  I keep thinking it's not really going to happen.  It can't happen, she really isn't going to go is she?  As I'm typing this I'm trying hard to see the screen.  In my whole 36 years I have only lived away for my sister for a total of 5 months.  She is my complete and total best friend.  We know everything about each other.  Hair color, length, shoe size, clothing size, bra size, boyfriend's names in high school, we know each other's daily schedules.  I don't know what I'll do without her here.  I know that when you open her front door you have to turn the knob a certain way, and where certain things are kept that no one else would know.  I don't want someone else to know these tricks of the trade up in North Dakota.  I just don't want them to go.  Is it selfish?  Oh absolutely, but it's true.  I am family based.  I can't survive without them around.  Leon freaks out on me all of the time, but it's just the way I was raised.  I even dropped out of a full college scholarship in Music Ed because I was scared to move away from my family.  My family means everything to me.  This is killing me, ripping my heart out and it's going to take me a long time to heal.  Sure, we can visit.  They will come back and visit.  It just won't be the same.

     Next up, I'm going back to school.  A friend of mine graduated in May and as I sat through her graduation I cried to myself and thought what a failure I was.  How I had done nothing with myself.  I was smarter than this.  So now, I'm going back.  I have been trying my hardest to get back into the Information Technology field and without a degree no one is interested.  What everyone is saying is experience is not enough.  Apparently a self taught Systems Analyst is not on anyone's radar.  For now, I will work full time and go to school full time.  This semester I plan to take 12 credit hours but I have registered for some IT Classes of software programs I am already trained in.  They will basically be refresher courses so hopefully it will ease me back into the "back to school" phase.   I will hopefully be able to carry on the Cloud 9 CaKery business at least with some Scottsbluff Winter Farmer's Markets and a few special orders.  If I am unable to continue working and going to school, I may have to visit the option of working part time.  As of right now, I have no intention of slowing down, but my education will come first.  I am committed to my degree!

     Last, but certainly not least, Miss K.  She is taking her first trip to the actual Shriner's Hospital for Crippled Children on August 25th.  Besides dealing with scheduling time off at work and making sure that everything is covered there, we have to be sure the kids are covered and things are handled here.  Animals, school schedules, two jobs for Leon and one for myself, school starts one week before for Lawrence, Kherington and myself, piano lessons to be rescheduled, medial records to find and send to the hospital, hope and pray that dance lessons don't start that week, arrange all of the final details with the local Shrine Temple.  SO much to do within a month.  Absolutely insane. 

     For Kherington's trip and her future trips to Shriner's we have set up a GOFUNDME account to help with any extra expenses above the Shrine Temple checks.  We would be absolutely lost without the Shriner's Hospitals and we will forever be grateful for the Shriner that we found who has helped us to get Kherington referred to Minnesota.  It is truly amazing.  The countdown is on. If you would like to check out Miss K's GOFUNDME page and donate to help, everything will go directly into her savings account at the Sugar Valley Credit Union.  If you don't want to donate online, you can message me for an address to mail it, I'll come pick it up, or you can take it directly to the bank and deposit it into her account anonymously.  You can click on the link below to check out her page.  

            http://www.gofundme.com/Miss-Ks-Shriner-Trip 


     So with ALL of this said, sometimes a girl just has to cry.  Sometimes, a girl has to shed a tear.   I'll be doing a lot of that the next few days, so if you see me I might just need a hug.  Tonight, I just needed some chat time with a friend and a little music to get all of these things off of my mind.  He really does help, even though he doesn't know it all the time, but he's one of the best at that job and I'm pretty thankful for that.  Friends tend to help in the end.

     

It all started with a boob cake...

Tonight I decided to write about...  My cupcake story.

So, if you are a friend of mine or my sister Katie, you have probably heard the word "cupcake" come out of our mouth at least once a day for the past oh...  month.  We have recently been preparing for what has been the the BIGGEST cupcake order our little kitchens have ever seen in this history of Cloud 9 CaKery.  What is this huge project you ask?  Well, let me tell you a "little" story. 

In 2010, Katie and I went to a wedding.  We saw a not so beautiful wedding cake/cupcake display and afterwards we discussed and thought that dang, we could really do better than that and maybe make a little money.  Later that fall, we took a cake decorating class at the college as something fun to do with Mom and Becky.  Our cakes weren't fabulous but they were fun.  We got to learn how to use the decorating tips, how to make the cakes more moist, what to use in frostings to make them color darker or lighter, etc.  It was something that we still use to this day.  After the class we made a couple of cakes for Christmas and for our kids' birthdays but nothing major. 

THEN, a friend of mine had posted that her husband was having a big birthday on Facebook.  She wanted a "boob" cake and wanted to know where to get one.  She was desperate she didn't know where to go.  No one was answering, everything was costly, nobody had a clue where to go.  So, I chimed in.  "I might be able to help but no promises, I've never done one before!"  Well, let the excitement begin.  I made that boob cake and the party was a success.  After that my brother-in-law wanted one and then my daughter's birthday came and she wanted a doll cake.  MAN, cakes were HARD!  I was going to have to start charging more and I needed help.  FAST. 

So, I recruited my sister.  It was originally her idea to even DO the cupcakes in the first place.  So I essentially stole her idea and ran with it, then asked her for help in getting it going off the ground. 

I had originally started calling the business Cutee Cakes.  When Katie joined up we decided to make the business more about both of us.  We thought that when you take a bite of your cupcakes you feel like you are on "Cloud 9" so then we added that.  Then we decided we didn't want to be a bakery because we weren't selling bread or muffins or cookies or anything.  We were a cakery!  Also, since the letters for both of our first names were in "cakery"  We spelled it like this...  "CaKery"  We capitalized and accented the C and K in CaKery so that people would recognize it was OUR business it was our idea.  That spring and summer we started doing special orders.  We did weddings and baby showers and birthday parties, everything you could think of.  Then, we took on a whole new adventure.

That fall Katie and I started selling cupcakes twice a month at the Scottsbluff Winter Farmer's Markets.  Holy cow.  Our cupcakes were an instant hit.  We were sweating from the beginning of each market for about an hour and a half in and then we would sell out or almost sell completely out and finally get to sit down.  People would not get enough of the cupcakes.  We would try different flavors every week. 

I think at the end of this past year we had invented 37 different flavors, we haven't had time to count how many new flavors we did this year.  We have done The Scottsbluff Winter Farmer's Market for the past three years.  It is always a great atmosphere around the market on Saturday's we enjoy the crowd. 

Then, Nebraska Life Magazine called.  We were like.. what the WHAT??!!  We did an amazing interview for them!  We had fun doing the pictures with Jessica and WE WERE IN A MAGAZINE!!

During the summer months, we usually take somewhat of a break but we take some special orders if time allows.  Once in a great while we did a summer downtown market, but the elements do not get along well with our cupcakes! 

The next big thing on our radar is The Cattleman's Ball of Nebraska.  About a year ago, a chef at The Steel Grill was mentioning that they were thinking about bidding out to help cater this event.  In conversation, I jokingly mentioned that they should hire out the dessert for the event and that Cloud 9 CaKery would cater.  Well, about 2 months ago guess who called??  Never did I ever think we would get this gig.  Was I scared?  HELL yes!  Did I think we could do it.  Oh yes, never a doubt in my mind have I thought so.  We only have a couple of speed bumps but we will just slow down the pace and get it done by deadline instead of early!

Now time for the sad part of the story.  In July, I will be losing my partner, my best friend, my sister.  Katie and her family will be moving out of state.  She may decide to carry part of Cloud 9 CaKery where she moves to and I fully intend to carry on my part of Cloud 9 CaKery as long as my time will allow.  I am intending to go back to college in the fall and without my partner here our orders may be harder to fulfill.  As of right now I intend to continue the Farmer's Markets in the fall because that really is my favorite part of our business.  If it gets to be too much because of my homework or schooling, obviously my education will come first, but this business is too dear to me to just drop. 

So, for now I'll keep it going.  It will not, however just be mine.  I am keeping it open to Katie and myself.  I owe a lot of the business to her and maybe someday she'll move back, we never know. 

Thank you everyone for your wonderful, amazing support of Cloud 9 CaKery over the past three years.  We appreciate all that you have done for all of us.  We will post pics of the cattleman's ball soon!!

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!