Break

If you follow my Facebook page, you probably saw that I took a break from Facebook - but in reality, I took a break from the internet world.  It was a much needed break and allowed me to start working through some of the demons that have made there way into our world.  While I still have a lot to figure out and a lot of work ahead of me, I am ready to start updating on our blog again.  This will probably be the only place I update, so if you want automatic updates - please take a few seconds to sign up for email updates.  I will not know if you subscribe and will not utilize your email address in anyway.

So....  now onto some of the things that I have been working through.  (a summary at least.....)

The reality that Liam is now in 2nd grade and going to a new school.

The great news that Aine is in a better position than she was l year ago, but the confirmation that she should not go to school because lung wise it is too dangerous for her.  Since her immune system is messed up and any illness can affect her lungs so drastictly and so quickly; we will be putting her into a homebound program.   We were expecting to receive the "no go" card from a doctor, but it honestly doesn't make it any easier to swallow the news.  So..... now we are working with the school get her into the homebound program.

I had surgery on my nose due to a deviated septum and am recovering very well from it.  I have realized just how sick I was prior to surgery and how much the migraines I was having affected myself and my family.  I had to cancel a lot of Aine's appointments during this time and am working on re-scheduling all of the missed appointments, which is extremely time consuming.  I still get really tired after a super busy day or a really stressful day, but nothing like it was before so I will take it and keep moving forward.

Aine is having skin issues that we are working on figuring out.  We believe it is a severe reaction to mosquito bites, but will have to wait to get a final diagnosis from the dr.

We are working on weaning Aine off of a medication and we are at the stressful point which is the determination point.  Her body will either be successful or it will fail which would likely land her in the hospital.  So I am monitoring her levels multiple times a day to hopefully prevent anything from happening.

We have had another piece of equipment added to Aine's daily regiment to help her cough the gunk out of her lungs.  She is doing well with it, but still has some learning to do to make it work as well as it should.  I am working of figuring out the schedule so that we can fit it in as many times as it is needed.

We are coming up on winter sooner than I want and early cases of illnesses that Aine needs to stear clear of; which means I have to start putting winter protocol into effect.  The first is minimizing the places that Aine is allowed to go (grocery stores, gas stations, convience stores, schools, restaraunts, etc), the next is to make signs for the doors (I need to make a permanent one, but haven't yet), then the biggest and most hated one - closing the house down for the winter - meaning visitors will have to answer a series of questions:  How are you feeling?  Runny nose? Headache? Fever? Last time you got shots?  Which shots?  Have you been around anyone that is sick?   We are also getting her masks ready so that she can go to her therapy lessons. 

I am trying to mentally prepare for the stares, nasty comments, and jumping back like she has the plaque because; at the age of 5 Aine has had to learn how to protect herself from getting sick.  I am grateful that she hasn't figured out the looks are negative and isn't affected by it, but I know those days are short lived and soon her feelings will be hurt.  I have been teaching her how to answer people when they ask questions.  I have been telling her to smile when people cover their mouths, glare, or speak to me like she's going to get them sick when in reality - they are more dangerous to her than she is to them.

I am preparing myself for the day that I say - ok!!  Time for homework!!!  Last year was not pretty - I'm guessing this year will not be pretty either.  She oh so wants to go to school - I wish I could send her, but quality of life is soo much more important than her going to an actual school and being sick all the time.  I continue to tell myself we are doing the best thing for her as she only went to school 8 times last year.  Yes - you read correctly Eight days.

I am trying to mentally prepare for the days that Liam wants Aine and I to go play in the snow with him and I have to deny him the first, fourth, tenth, I forget how many times I have to say no by the end of the winter.  He understands that Aine is unable to control her temperature and will turn blue after 5 minutes in the cold, but he doesn't give up asking - even though one day soon he will - and I will have missed out on all those opportunities to play in the snow.  At 7 - I still have yet to teach him how to make a snowball, a snowman, a snowfort.  We have never had a snowball fight, have gone sledding one time (and I'm sure he doesn't remember it), and made One snow angel.

I am trying to mentally prepare for it to be Aine and I - just Aine and I.  Lack of adult interaction is scary, draining (both mentally and physically), and not good on full sentences.

You may be asking Why? Why are you telling me this? or saying - Oh... I'm Soo Sorry for You!!  But I'm asking you not to be sorry for me, for Shawn, for Liam, or for Aine.  I am telling you this so you understand why I have not been giving updates and why I have been away from the world of the internet for so long.  The brain is a wonderful place, but it is the worst place that you can be when you are feeling down, unsure of yourself, or overwhelmed to name a few.  I'm also telling you this so as I update on various things you will understand where my fears, confusion, frustrations are coming from.  The world is a crap place right now with a lot of crap going on and I let it affect me in a way that it shouldn't, so I turned my attention away from the source of negativity and instead to my family and what I can do to help them and how I can be there for them. 

As always - please don't hesitate to ask any questions.  Don't forget to sign up for email updates if you haven't already and look for more updates (Fun ones :) )

I am having a hard time believing that it is the last day of school for Liam!  He will  officially be a 2nd grader at the end of the day!!

The year has gone by soo fast and I know that the summer will go even faster.

Both Aine and Liam will continue with Karate throughout the summer.
Liam will continue with swimming and wants to add gymnastics to his schedule so he can start working on his extreme forms for Karate
Liam will be doing some summer school and both kids will be doing library and church activities through out the summer.
Mike and I have been busy busy busy in the garden and can't wait to start harvesting our yummy food!  Liam is just waiting for the raspberries to ripen :)
I had my septum repaired so I'm ready to hit the road and find all those Awesome garage sales!!  It's amazing how much energy I have since my surgery! 
We will be going to  2 Relentless events and 1 Hopekids events in the next two months.  I will be lifting in one for sure and Shawn may be running at one.
Shawn has started grappling and karate as well as continuing to run.

We are excited for our busy summer and  the fundraising events that we are apart of.

If your in the area - let us know!  We'd love to catch  up!!

The kids have been rocking it!!!

Besides the dreaded Strep throat (Liam), the kids have been pretty healthy.

They have been competing in karate and loving every minutes of it.
Liam went to Chicago with Shawn and did really well.  He competed on a raised platform and wasn't bothered by it at all.
Both kids competed at that karate cup and did fantastic!  Aine competed with Nunchuck princess for the first time and was surrounded by a huge crowd.

Liam is close to the end of his 1st grade year and will be moving to a new school next year where he will complete grades 2-5.

We are working with the school to figure out what the best thing for Aine is concerning school.

Aine had a cardiology appointment that went well.  Her pressures are remaining similar her conduit is still working, and she looks healthier than previous appointments :)

We still have questions about her size, but that is currently on the back burner because there are more pressing items that need to be figured out first.  Some of them are: what is causing the bradycardia (slow heart rate), what is causing appearing and disappearing rash, does she have immunity to certain things (chicken pox is the biggest), how are her hips and pelvic bone, how is her GERD going and is it affecting her heart?  There are many other things that we are working on figuring out, but this will give you an idea. 

We finished our weekend going to the Relentless kickoff which was a Huge success!  I was able to meet Hannah, who is the little girl I have been matched with to represent at the Big event coming up in July.  Following is the link to my FirstGiving page:
http://www.firstgiving.com/fundraiser/nicole-casey-3/relentless2016

Thank you for your continued prayers, support, and good wishes!  They mean the world to us!!

A lot has been happening in the Casey household!

 Bragging - training - fundraising - and smiles!!!


Both kids are completely into karate.  Liam is currently a blue belt and has a tournament coming up this Sunday!  He will be competing in 2 events for sure, with the possibility of a third depending on how try-outs go.  Aine will be graduating the second week of March to a double blue stripe belt!  Both kids have a tournament coming up in April - Aine will have 3 events and Liam will have 4 or 5 events (again depending on try-outs)   Liam will then again be competing the end of April.

Aine is under the weather right now, so if she could get some positive thoughts, prayers, well wishes - we would greatly appreciate it.  I will answer any questions I can, but it will mostly be through some form of written update so I can stay by her and remain quiet to allow her to sleep.  Liam really wanted all of us at the tournament this weekend, so I'm really hoping this isn't the other shoe - just a tiredness issue.

Liam will be on a soccer team this summer as well as starting to take swimming lessons again (we took a break because the facility was updating their locker rooms).

Shawn is currently training for a 17.5 mile run as well as a few other events (Tough Mudder, etc) that he does on a yearly basis.

I am training for a powerlifting event called Relentless which is to raise money for HopeKids. 
To find out more information follow this link:   http://www.firstgiving.com/fundraiser/nicole-casey-3/relentless2016


With all the cool things happening and the kids getting into more activities, I decided to try my hand at direct sales and chose a company that can satisfy my sweet tooth - Dove Chocolates!  I'm still super new at it, so I am still learning the ropes, but check it out by following this link: https://www.mydcdsite.com/pws/nicolecasey/tabs/index.aspx

Aine is also part of another group called Coles Page - this is a great site to share prayers and add people to your prayer list.  You will need to set up an account (free of charge and just for security reasons) to view many of the families profiles - but you can check it out here:  http://www.colespages.org/

Because we are all for the betterment of life, helping those around us, and sharing what we believe in - we have to throw out our friend Holly's page also.  She started taking the plunge with her co-workers a few years ago (you'd have to ask her if you want to know exactly how many times).  Well - she's at it again this year!  If you are able to help out it is greatly appreciated.  If not, passing her link on (as well as others you believe in) is a Huge help!  Follow this link to get to her page: https://reg.plungemn.org/participant/hollyf

WELCOME 2016!!

As we say goodbye to 2015, I look back at all the wonderful and amazing times we have had this year.

No matter how much I remember, I know I will always miss something - which will pop up as a splendid memory later.

Some of my most favorites at this time are:

Liam deciding to go to a Karate class and finding an activity that he enjoys so dearly he decided to join team when given the opportunity.  He was asked to be apart of the Master's Club and is working on being part of the Dojo Dudes as well as using kamas in one of his forms. 


Liam is doing great in school and learning to make wise choices for himself.  He loves to read and is really getting into writing.  He learned how to write his name in cursive to sign my birthday card.  (Yes, the tears were there).  He is growing up soo fast I don't feel like I can turn around without missing some awesome thing he has learned.

We unearthed rocks.  It was pretty cool!!

Aine has been doing soo much this year.  She also joined Karate and was asked to join the Master's Club.  She has since started using Nun chucks and is enjoying the ability to do what she wants to do.

She has been horseback riding, but took a necessary break which once weather conditions are verified she will be back in the saddle :)

Aine started walking on her own the end of October and hasn't stopped since!  She has started to ask to walk instead of being carried and is also walking up the stairs by herself!

She has had a bunch of testing and monitoring of her heart in the last month and will have further testing done in the next couple of months to finalize some information and then we will start processing and sharing that information.  But.... as of right now, her heart is as stable as her heart can be (another checkup will be in 3 months), her lungs sound good, her speech is progressing, her walking is Awesome! and her hearing is "getting better" as she now wears hearing aids while awake.

Waiting patiently for the doctor

Ready to get my hearing aids!

Sadly - none of the places we update are letting me upload videos (I'm calling not operator error - LOL!!!)

I will work on getting those loaded - or - I may have to get help from someone...

I hope you have a great 2016!!! 

June came and went - July is just about to do the same thing!

I have a hard time allowing myself to realize just how fast time is going.  It just seems to go faster everyday.

The kids are doing great - they are enjoying the summer, Liam is spending some time with his friends, they are continuing with karate, horse, and swimming.

Aine has been going to school once a week to get her back in the swing of things and working with another kiddo.   Liam has been working hard on his workbooks (some days are harder than others - like today), but we get through them :)

Aine will be having a CT scan as well as a barium study this week and we are hoping for good answers (Great heart function and no reflux).

We are getting used to having a second dog in the house again and are excited to see how she hunts. 

Shawn completed Warrior Dash but was unable to run Tough Mudder because of the storm that came through.  He is not happy about not running it, but will go again next year.  He has a few more runs this year with the soonest one being the firemans 5k.

Mixed Feelings

On Monday we lost a very special person in our lives.  Shawn's mom - my mother-in-law Sandi.

She was not only a Wife, Mother, Mother-in-law, Grandmother, Sister, Aunt, and Friend - she was a light during the sad times, a great ear, the rock to keep you planted on the ground, an honest answer and full of love.  There is no question in my mind that she will be greatly missed and that anyone that has had the honor of meeting Sandi will never forget her and will always smile when they think of her.

Knowing that Cancer was taking a toll on her body and causing pain makes it 0.0001% easier to handle that she has crossed through the pearly gates and is watching over all of us; but it really doesn't make it any easier because in reality it just plain sucks. 

A few of the things that I get sad about when I think about this fact:
I am:
short one person to tell good news to,
to kid with about moving closer to us,
to get a hug from,
to get a smile from,
to joke with about how much time something should cook,
to watch smile when my kids are around.

These are just a few of the thoughts that make me tear up.  Yesterday really brought these to light as Aine and I went to her 6 month cardiology appointment.  On a normal basis, I would tell Shawn and he would tell his mom, who would tell his dad - I can hear the pleased tone in her voice as they have a discussion and the HOT DOG!! coming out of his dad's mouth - but the reality of it.....  it Didn't happen!  Why???  cancer - that's why.

I try to remember that she Was with me - I brought her with, with a gift that was given to me.  A gift I would have never asked for, nor expected to receive.  A gift that I never realized she had given me the entire time we knew each other.  STRENGTH!  The strength to carry on even during the hardest times in our lives.  The strength to know when to fight, the strength to know when to call on someone whether they are "here" or not, the strength to stand tall even when others are trying to pull you down.  Strength is never a weakness - you just need to know what type of strength you need at that current minute and use it to the best of your ability.  Never give up - pursue what you want and never look back.

Today my thoughts have been all over the place, but most of them have gone directly back to Sandi.

The first day we met - she pointed out a sun catcher and informed me it was so no one walked through the screen door.
The first time she saw me without my shoes on (I wore heels way back in the day) and her comment - "MY! You Are short!!"
The first time I walked out of the dressing room while trying on wedding dresses and her face turned just enough to let me know she didn't like the dress. (I did Not get that dress)
The hug I received after Shawn and I said "I do"
The repeated looks at the bibs we gave them to announce we were pregnant with Liam.
The joy on her face every Christmas when we would walk into the living room and see her beautiful tree.  I was always amazed at how it looks - Stunning!
The joy she got in "hiding" that she was showing me something for Shawn or one of the kids.
The not so Awed face when she saw our Christmas tree which was decked out in retro ornaments and so flashy that it could probably be seen from miles away ;)
Our trip to South Dakota. (She posted and we Loved having her with us).
Sitting for hours at their kitchen table talking, laughing, and smiling.
And walking into a room and smelling her perfume.  It was always the same - Victoria's Secret.

I know she knows that Aine's appointment went well yesterday and that there are no changes from the echo that was performed 6 months ago.  That we will hopefully be able to do a chest CT scan without sedation (as long as no other procedures are needed).  That her cardiologist feels she looks the best she has ever looked and enjoyed seeing her so mature.

I will forever be grateful that I had the honor of meeting her, that she accepted me into her life and loved me like another daughter.

Love you Sandi!