12 days...

It is down to 12 days before my surgery... luckily lately I have been extremely busy trying to get all my Christmas shopping, thanksgiving shopping and cooking done, schoolwork and all holiday related activities done; so I have had very little time to sit and think about the surgery.
I know if I do, I get a flood of emotions and worries over everything. I don't tell many people how I actually feel about the surgery, how extremely terrifying this all is. The thoughts of recovery and hopes that it will all go as planned.
The chances of setbacks and ending back up in the hospital are high. The surgery is very complex and so many things could go wrong.
I don't even know where to begin on explaining to my children about the surgery or that Mommy will be gone for 2 weeks. I am their main source of dependency, and the calm in their busy lives.
This is going to be hard on all of us, and I hate that the surgery will be done 45 minutes from my house and kids. And in the same hospital where I spent so many endless days and nights with Zach when he was so sick. So many memories are in those hospital walls and engrained in my mind surrounding those couple of years.

Can't back out now, I am so within reach of this pain free better life with no IC.
12 days...
12 days...
12 days...
I can do it.

I am IC

I am the poster child to Interstitial Cystitis...
I was diagnosed in March with a 400 ml bladder postmarked by all the typical IC inflammation. (For perspective a normal persons bladder is usually 1200-1500 ml)

My everyday consists of pain, painful bladder that feels like a constant throbbing with knife like sharp pains along with severe lower back and having to pee every 30 minutes to an hour to help relieve some pain only to bring a different type of spasming pain. My bladder lining is gone and so therefore all urine that goes into my bladder basically is like pouring acid on an open wound. The food I eat affects it, drinks affect it and stress.... stress is a HUGE factor but how do you not be stressed when you're in so much pain.

Since March I have tried every medication and treatment out there to help control it, even ones that put my health at more risk. I've been immune suppressing medications, participated in painful clinical trials and had more allergic reactions to medications just with the hopes that one would help. The bottom line is that it has gotten to a severe state fast and at this point, there is no treatment or medicine that will make a difference. 
The only thing that will take away the pain is having my bladder removed. To make it all worse, I am allergic to all narcotics so I get ZERO relief from pain....EVER! So I've made the decision to have my bladder removed.

This isn't an easy decision, so please don't tell me it's not a big deal or act like my pain is minimal. IC pain is comparable to END STAGE RENAL FAILURE PAIN AND END STAGE CANCER PAIN. So it is a big deal. And not being able to take pain relief medications is torture.

In one hand I am so utterly happy that I have this option. I have a day that will result in a better pain-free IC free life.
But in the other hand, I am scared shitless. This is a complex surgery that will leave it's mark. Not only do I endure the 6-10 hour, the 2 weeks inpatient and up to 6 month recovery time to get to my life. But I also deal with the self image and emotional toll. I will have my entire bladder removed, and several feet of my intestines will be made into a new bladder.  It's called an Indiana pouch, a fake new bladder that will work better, hold more and cause NO pain.

I know this will be the hardest thing I do to myself. And while it was a decision I jumped at when given the chance, it is a decision that will change everything about me.
I am very lucky to see one of the best IC doctors in the World and I trust him and the decisions he has made for my heath.

He is an amazing and compassionate doctor who actually cares about his patients and their quality of life. Cause let's face it... that's what I'm choosing. I am choosing quality of life over everything else. I want to do the things I used to and want to in my future. 

Some people tell me I have strength and courage to endure and do this, I don't know about that. I am scared and nervous and putting my life in the hands of someone else. Kissing my kids goodbye and saying I love you will be the hardest thing that morning. It's a long surgery, a very complex surgery and it has risks. That scares me the most.

But I'm going to act strong and continue to act like everything is normal for the next two weeks until my surgery date. I have gotten really good at FAKING being normal and strong so this should be no big deal, right?!

Luckily I am very thankful for a small handful of friends who help me through and listen to my struggles and offer encouragement and love. It's a hard thing for most people to understand and deal with, and I get that, but I don't need the ones who don't understand.

So on December 5th, have faith in my Dr and my surgery and the outcome of my new life.

 

Walk for Wishes 2014

The Make-a-Wish organization is very important to our family. Zach was diagnosed with a life-threatening medical condition in 2010 and received his wish to go to Disney World in October 2012. Our family had a wonderful time in Disney, it was a week without doctor visits, hospital trips, anxiety over what’s coming next. It was awesome, our family needed the break from the routine of having a sick child.

And like our family, there are lots of other families that need that break.

Make-a-Wish grants thousands of wishes each year, each wish costs about $6000 to grant and Make-a-Wish is a completely non-profit charity. So our family dedicates a team each year to help raise money for Make-a-Wish by walking in their Walk for Wishes.

Walk for Wishes is a walk through Tanglewood, through the Festival of Lights before it opens for the public. On November 15, hundreds of teams will walk and there will be over 3,000 people in attendance. Most teams are wish families and walk to raise money because we know the tremendous power behind the wishes that our children have received.

This is how we give back to an awesome organization that put a smile on Zach's face like it does to thousands of children with life threatening medical conditions.

Although Zach has had a lot of medical problems and has spent more time in the hospital in his 5 years than most people do in their lifetimes he is doing better. There were times he faced infection, sepsis and even a transplant evaluation. He has been through feeding tubes, central lines, blood transfusions, IV nutrition, too many tests and surgeries to count or name and too many days away from just being a kid.
Make-a-Wish put a smile on his face when they asked what he wished for. "Mickey Mouse house" was his exact words, he loved Mickey Mouse and every time he watched a movie and the castle appeared in the previews, his face lit up. So when Make-a-Wish told him he was going to Disney World he was ecstatic!

To people who do not have special needs children or do not know what it is like to sit by your Childs’ hospital bed day and night and just wish they could come home, you might not understand the value of Make-a-Wish.

But to us… and to all the other families that have been touched by them, it is unexplainable. To get a week of no tests, no appointments, no hospitals. Just your child being a kid, and playing and laughing; it will be forever in our hearts what it was like for that week.

And some kids are not like Zach, some kids do not recover or get better or have remission. Knowing so many families that have lost their children to these life threatening medical conditions, makes me cherish Make-a-Wish so much more. Even those some of the children are no longer with us, their families remember the joy and time they got to spend seeing amazement in the eyes of their little ones.

So to ensure that every child going through the diagnosis of having a life threatening condition is able to receive a wish, we give back.

Team Superman in honor of Zach will be there showing our support of this amazing organization.

Please join our team and help us provide a wish for another child

www.walkforwishestriad.kintera.org/teamsuperman

For more information or information on corporate sponshorship opportunities contact me

                                                                  (Walk for Wishes 2013)

Empty nest...

Kindergarten 2014

 

It happened... the first day of school (insert crying here) ok well maybe not the first day or week....haha but eventually yes, I did cry. 

 

As much as I wanted the quiet house, it is a lonliness that I wasn't expecting. To think that my baby boy is off to kindergarten is heartbreaking.

 

Did I pack his meds? does his teacher know what to do? does he know what to do? will he eat lunch? will he miss me? what if he does miss me? will they call me?

 

How do you control all the emotions of putting your faith that your child, who at one put in his life was considered failure to thrive, medically fragile and probably wouldn't live to the age of 5, with a stranger for 8 hours a day???

 

But, I did.... and yes, the teacher has spoken to me almost everyday about him but the transition is going better than I expected. I still cannot believe he is in kindergarten. My baby boy is growing up...please stop growing baby Zach :(

 

Everyday seems to get easier though, he likes school and he is making friends. He says he has 2 girlfriends and 1 boyfriend so far.. oh the innocence of a sweet 5 year old. I wish I could keep him this innocent forever but eventually society will get to him and he will learn the importance of his mix of friends.

 

With Zach's health issues still at hand and with several relapses over the past month, he does have special accommodations in school. He cant play in recess or in PE until It gets cooler weather outside. But he is okay with that most days, the first week was a bummer when everyday he would come home telling me he couldn't play outside. Now he doesn't mind too much, he gets to play with the Ipad and is pretty content with that.

I am guessing this whole empty nest feeling will eventually surpass, but oh how I miss the days of snuggling on the couch with my baby boy all day.

 



Speechless

Honestly I just don't have the words right now to put into a post... so many things have happened and changed that I am speechless. 

I'm trying to wrap my head around all the new things; my illness, my kids, the loss and gains of friends... still trying to cope everyday with all the changes.  I am tired and overwhelmed and want to write but my head won't stop spinning long enough to get my thoughts out on paper.
Right now all I can think about is everything but what I need to.
I'll leave you with this...

The lessons we need most always come with the most pain

Oh the places you will go

I am just in awe that I just sat through my son's first school awards program. Bittersweet moment of my baby is graduating kindergarten and look how far he has come.
A year ago we started this journey with fear and anticipation of exactly what this year would hold for him. It has proven to be hard, yet well worth the journey. He has amazed me with his abilities.  He has learned more about who he is and what he can do in the past 9 months. He has made his first steps in becoming someone great. Someone who is unstoppable and courageous. 
All the mornings that we spent fighting clothes, school and fears are now worth it. All the progress and all the tears. Not to say this year didn't come with setbacks and disappointments, it did but through all of them, he overcame.  He did it.
My son who fights more with himself than anyone I've seen. Who struggles with anxiety and depression worse than most adults. My son finished his kindergarten year. I couldn't be more proud of him.
And even though he won't show it he is proud of himself.