Well... Here. We. Go!

August 24, 2018

I'm doing this... I'm really, really doing this!
Welcome to my very own WEBPAGE!

I am chasing a dream that I've had for so many years!

Thank you, thank you, thank you; for making the switch from caringbridge to my blog; for following our incredible, endless journey; for following along on my new endeavor!  


I apologize for my terrible updating of caringbridge.  For my facebook friends, I'm a little more reliable but honestly, my updating is lacking!  Part of that reason is that it is sometimes really difficult to update.  We are living the chaotic rollercoaster every single day and by the time night hits, my head hits the pillow while my body is still running!  Another reason is that this life is emotionally draining and somehow when I stop, think about it, put it into words, it exhausts me more than I already am! Sometimes it is hard to update because there aren't good days anymore... and that is hard to write over and over.  There are okay days; when the pain is more manageable; the breathing is easier; the fatigue is less.  Then, there are the bad days; when curling in the fetal position, wretched in pain overtakes a good amount of the day.  On these days, it takes everything I have just to be a mother and wife.  This disease is always right there in our face, waiting for the next kick, constantly worrying that the next kick will be harder, more painful.  This disease is so sneaky too; we can have a day when Josh wakes up feeling okay and suddenly, out of nowhere, BOOM.  Another sneaky thing about this disease is that if you look at my handsome son you don't see it...he looks normal, does his absolute best at acting normal, and an outsider would never know what destruction is occurring inside his precious body!  This is both a huge blessing and giant curse... I love that Josh can appear normal and he can put the beast inside him aside.  Josh is not an attention seeking child, so in that part of the hidden disease, that's a blessing.  However, there are the times that people forget, overlook, or underestimate what is really happening deep within.  There are the familiar comments "But, he looks so good"... that, if said on the wrong day, can really hit a raw nerve!  That is my curse (word) button regarding this disease.  The final reason for not updating is that I am writing a book about my life journey and experiences; it really has taken me to places in my soul that I've kept hidden and updating caringbridge after an emotional day of writing is just plain ol difficult to do.


First of all... after ten + months we are finally home again!  Although we are still dealing with the insurance company and our builder... it is great to be home.  Our home turned out beautifully.  I still catch myself walking around saying "is this real?  is this really my house?"  Once we get the exorbitant amount of money which is owed (and really bankrupting) to us, life will be a little more enjoyable in our new home!  Included some pictures for you!


Yikes, ugh, no, no, no JOSHIE IS A SENIOR!  As for his health; okay days and bad days... never predictable, never the same.  He has managed to stay out of the hospital since his last surgery in December and that is amazing!  I wish the pain attacks would stop.  I wish the weight would stick (he's currently pretty skinny and Josh is still throwing up more than he should.)  I wish the energy level was up (the energy is definitely apparent in the sports Josh continues to play.)  But, everyday he is at home, smiling his "yeah I'm annoying someone" grin, and living his happiest life possible is a gigantic blessing to me!  Currently, Josh just got his first job at Zoup, a new chain restaurant  to MN in Eagan.  He will started as soon as  when returned from our yearly Marco trip.  Unfortunately, he worked about a week and his body took a toll.  He now is fighting a nasty pneumonia and taking (obviously) a break trying to recover/  It's been day to day trying keep him out of the hospital!  When not sick... He is busy with summer hockey and scored his first "unofficial" varsity goal while scrimmaging East Ridge.  Josh has a beautiful girlfriend for over a year now, Olivia, whom he is inseparable from.  And, of course, his amazing friends are still by his side and supporting him in ways I've never quite seen.  For that, Josh is truly blessed!

The rest of us:

Andy is busy at work as he took on the project manager role for a huge project.  His employer continues to be so supportive of Andy and our family throughout this rocky road.  Likewise, Andy is such a hard working, dedicated employee.  It's amazing to see someone go to work happy and come home happy.  As we are starting to have those "you're an adult soon..." conversations we are really trying to emphasize to all the kids that the only way you will truly be successful is through happiness.  DO WHAT MAKES YOU HAPPY...and the rest will come!  

Ryan is baking and cooking up a storm (as I type he is making crème brulee for his Nonnie, her favorite!)  Ryan ended his freshman year with a 3.79 GPA and will be skipping another level in math and taking Calculus this fall.  The kid has a brain like no other I've seen.  He will always be my partner in Trivial Pursuit!  There's some things health-wise with Ryan, I'm just not ready to go there...maybe I don't want to believe it! 

Gracie and Natalie have had a busy summer playing soccer, traveling lacrosse, and dance!  Gracie will be starting sixth grade in the fall at a brand new school, located in our backyard!  She is very excited and ready to be a "sixlet!"  Natalie will be alone for the first time in the elementary school.  She will tackle fourth grade with her dramatic flare and girly, outgoing personality!

As for me... argh!  Well medically speaking; life has not been to good to me!  April had me going through three surgeries in four weeks.  I first had a pace-maker leads put into my kidney area.  The intention was to help with the constant kidney infections (I will refrain from details because who really wants to hear about my pee problems...seriously)  Although it worked well, I wasn't made aware that I could no longer have MRI's.  Being allergic to contrast dye with CT's and no more MRI's left someone who is in constant need of imaging, pretty image-less.  Needless to say my spine surgeon said it had to go! 

With that... I am continued to be plagued by constant back pain and worsening nerve damage in my left foot and leg.  After getting three different opinions from ortho surgeons all stating I need a fusion, I contacted a neurosurgeon for a fourth opinion due to the increased nerve issues.  After a new MRI, she saw some suspicious spots on a couple of vertebrae.  It could be bone fragment from my last surgery, scar tissue, or something else.  It was her opinion to go in and see the issue, try and clean up what she can and possibly do a fusion if absolutely necessary.  I was not completely hopeful with the outcome and unfortunately know the fusion is in my future but I liked the idea of her going in and seeing what she is working with before we proceed with the last option of a fusion.  Honestly, I am tired of living in pain.  Some days I am able to put on my "fake" happy face but most days I'm crying and complaining and whining and being the BIGGEST baby ever!  I still will never understand how Josh has been doing this for so long, so gracefully!  He is definitely an inspiration and my idol!

I had surgery last week.  It wasn't exactly successful, as she was only able to 

"clean" part of the affected area due to the incredible "growth of scar tissue" yeah me... I can grow scar tissue!!  There was also a lot of bone fragments that were to close to my spinal cord- fluid sac.  There is no doubt that a fusion is coming ahead!  After surgery I was admitted and spent five days in the ICU for a high heart rate and breathing issues {asthma}.  During my stay I had another MRI of my neck and learned that a cervical decompression surgery will also be on the list!  I'm thinking I should get a BOGO offer or at least do some free liposuction while I'm under!!!

Here's Where I Get REALly REAL!

Life has continued to be a constant, chaotic rollercoaster.  At night, when I lay down and all is quiet, I'm forced to think!  I feel like if one thing in our life slows down, another thing starts up!  I have to say there are days where I really struggle just to "human" you know; get out of bed, maybe get dressed- eh probably not, just breathe- yea, my asthma plays a part in that one!  My kids have seen me spend an entire day in tears.  It's okay though.  It is real life.  I know I am not alone, it's just those are not the things we like to talk about.  Right?  But, crying cleanses the soul and the kids seeing me cry hopefully shows them its okay, sometimes.  And always (I'm at a 100% so far) tomorrow is a new day, a new start!

When I stop and think...a chronic illness for my dad that caused me to pretty much be raised in a hospital, a chronic "term"inal illness for my son pretty much still living in a hospital, my own health issues making me be in a hospital, raising four kids in a world that is getting more difficult everyday, raising four kids to be polite, caring, compassionate, authentic, vulnerable, contributing individuals, pneumonias, sinus surgeries, kidney issues, a house fire, money issues (stupid insurance owes us $40,000 that we've obviously had to spend up front...$40,000 grrrr), fortnite...I mean seriously its a f*&^ing game already!!, caring too much- leaving my heart on my sleeve to just get hurt- or as we say being "soft", friends, friends with issues, friends with cancer, being a little fatter than I'd like, mean pre-teen girls, this back shit, working on a marriage everyday, just G*d D*mn Human-ing… phew, there's a lil on my list!  Life is hard!

On top of everything else...I suffer from depression, I'm medicated. Some days the medicine helps, some days it doesn't.  I've been medicated since high school.  I've struggled to stay alive.  I still have days I struggle to stay alive. Those are the days I cry!  Believe me, I have days where crying is all I do!

BUT... there are many days that I don't cry.  There are many days "I win!"  There are days when I accomplish "human-ing" and so much more- like cleaning the house!  There are days I look around and am constantly amazed at the world.  I am amazed at people.  (Believe me... more people are GOOD in the world, they really are!)  I'm amazed at the beauty that exists in every place you go, if your eyes are open!  I thank God for giving me more "I win" days, so far.  I've been given a soul that despite all that is working against us, I mostly, always (eventually) choose better. 

KEEP CHOSING BETTER friends!  ALWAYS CHOSE BETTER people!  bitter kinda sucks (yes mom I know how much you hate the word sucks...but bitter sucks)

hey- Thanks for sticking with us...

this life thing is not always easy but it's always worthwhile. 

xoxo Katie (and gang)

you can still leave comments...I really, really love they make my day.  Just click on the contact me and leave me a note...anything, seriously anything you want to say, I want to hear.  You all inspire me!