hug them. squeeze them. never let them go

You hug them a little tighter, tell them you love them for the 15th time today, give them that extra kiss they ask for and when they want five more minutes in your bed...you say ok.... Why? Because you just never know if this is the last. 

They grow up too fast, in the blink of eye they go from pooping in diapers to driving a car. And you look back when you're dropping them off a block from the school  cause you're "cool" to them anymore, and you miss the times when you had the chance to squeeze them and when they actually wanted to give you kisses. 

And in the wake of all the wrong in the world, you look at this being you've created and molded and watched grow and you realize that you made some mistakes, you gave him too many cookies before dinner, they saw you cry too many times, you lost your temper once or twice... But through all of that, something great happened. Your child. 

And they are not perfect, by all means. They will mess up and ask for your help. Give it. Willingly. But even if they don't ask, give it. Because sometimes we as parents have to give in to give them what they need not what we want. 

You never know if tomorrow is promised, and watching the news everyday surely makes you hope that it is. It is scary to think people have no regard for precious life and can just take it as they wish. So treasure yours, treasure your children and family.

Hug them a little tighter, tell them you love them for the 16th time and give them another kiss. 

 

 

 

pain...

Pain is a bitch. I hate it, I hide it so well though that you would never know I spent the morning crying with an ice pack on my stomach. That I swallowed back two not working pain pills.. The pain pills that are basically equivalent to Ibuprofren  cause I am allergic to anything else. That I didn't sleep the night before but just laid there wishing it would stop. 

You'll never know this, you'll never know any of this... Why?! Because I am a mom of two boys who need me and look to me to run their lives everyday. I have to be that person they depend on so what and how I feel doesn't matter. I hide it so I can be normal for them. 

I hide it so I can be normal for everyone. I have a job, I love my job. I also have a full time college education I am pursuing and a full time wife status that I am trying to pull off yet somehow always fall short because some people just can't understand how pain changes people and how pain causes people to not show emotion because you can't stop once you start. 

But the pain, people don't understand pain. Especially when you physically don't have a "reason" for it. I do have reasons for pain but no one knows that either. See I don't tell people about my reasons, I keep my surgery and my problems to myself. I strive to be normal. It's everything I want, I hate that I am not. I hate this person I am, but I can't change the pain. 

So I just hide it so well you never know it exists. 

Ramblings

So I feel like my blog has always brought me a joy and outlet for writing and expressing my feelings.. And I've been very neglectful to it and the people who follow it when for so long this was my way of dealing with a lot of emotions I was going through mentally and physically. 

Over the past year, I've kept in so much. I've been going through so much with my health and complications from my surgery (see previous posts) that I haven't had the time or ability really to sit down and express everything. It's been a very challenging recovery, mentally, physically and emotionally and to say I am over it or it's all better is definitely not a true statement. But right now, I don't want to start back into my blog with all that has happened, I am trying to not relive or think about all that IC did to me, has done to me. So I'm not going to write about it, at least not yet. Maybe I will come back to it at some point and share more of my story but not now. 

I am coming back to writing as a means of healing and reflection and all the good it does me. I am going to venture into expanding what I write about. Sure, I'll still be writing about my children and their struggles but also some other topics. 

So this is just basically me rambling about how I'm back now, and this is the first post since 2015. It's not much but it's been a while so I'm sure it will all come back eventually. 

 

I'll be ok.... soon

There are some days I frankly feel like giving up. Like I made the worst decision in my life, what the hell was I thinking? There are some times that I am so mad at myself for not being able to be normal or quite frankly just to be able to shower and get dressed and not so worn out that I need a nap before any other tasks.

Today is a day that I feel like this. I am fighting a cold, 3 days home from a week stay in the hospital for an additional infection from my surgery and walking around with a wound vac on that literally drains my soul. I am tired, I am weak and I just want this all to be over. I want my life back.

I ran across this picture and saying this morning and it describes my world to a tee.

I'll be ok... just not today

Deeper into hell

Not even a week into my recovery home from the hospital, to be exact it was 2 days... 2 days... and I find out that my incision is soaking through the bandages with discharge like crazy. The real issue was when I took the bandage off and it was just bright red blood. I immediately call the office and get an appointment to come in.

This is when the fun just begins... a small area of my incision right beside my belly button was trying to open and was pouring out discharge and pus. So in office my Dr had to reopen this small area. The nurse showed us how to pack this small hole with guaze twice a day.

I was also started on an antibiotic as well since the incision had become infected. We thought that was all the problem and it was solved now and the rest would be easy sailing.

Two days later as I'm taking a shower and using every last ounce of energy I had, I broke down. Looking down seeing my body in the state that it is in. Feeling how horrible I felt. Knowing this was not how it was supposed to be. I cried. And I cried. I hurt, every spot hurt. My incision was draining massively, the antibiotic made me sick. It was horrible.

So after some crying I texted my Dr. I told him what was going on and he agreed to see me the next day in office and would change my antibiotic.  All I had to do was make it through one more day.

I honestly had no idea what to expect. I knew he would have to open up my incision more but the way I felt I figured I would be in the hospital to do so. But no, let's just say I am glad that my Dr has good taste in picking out his residents cause anyone else couldn't have convinced me it was ok.

But here is this resident re opening my incision as I lay on the office bed. It was horrible.  It was painful, I about passed out twice. They had to lay the bed back and take my vitals and give me a break cause it was just horrible. Really there is no other way to describe it but horrible. I laid there while feeling him pull apart my skin, then pack it with guaze and cover it up. I left with a 12 inch long open incision on my belly. It felt like my insides were going to fall out.

I saw my Dr again a couple days later and he was definitely happy with his residents work on my belly. Although he was ultimately unhappy it happened to begin with. He said only 25% of the time do people get infections. I was just lucky I guess. He wanted my incision to be pretty and heal nicely so he had closed it with internal sutures and then glue on the outside. He said he could have used staples, and this wouldn't have happened but the incision wouldn't have been as pretty. I guess now it doesn't matter because it is definitely not pretty at this point. But he reassured me once it is healed he will fix it.
He also ordered home nursing to come out and evaluate my wound for a wound vac which would aide and speed up the healing process. So I spent the next week waiting on the home health nurse company to come see me. They finally showed up, went through all my intake questions, talked to me about a wound vac and supposedly placed an order for one. I say "supposedly" because after several calls and finally a letter in hand given to the nurse, I never saw the wound vac.

Luckily my mom came over twice a day to repack my incision, help me shower and take care of my kids and all the other daily activities. I still felt like my insides were falling out. It hurt to move, it hurt to walk, I slept on the couch cause I couldn't lay down. I had my drain tube still in which drained my kidneys and new bladder. I honestly felt like I had made the worst decision of my life and I knew it wasn't supposed to be like this. I broke down and cried too many times to count. It wasn't supposed to be this way.

That's all I could fatham. It wasn't supposed to be like this. I was supposed to be halfway through recovery. Feeling good, using my new bladder. Enjoying Christmas with my family. But I wasnt. I was confined to the couch in my living room. Only getting up to empty my drain bag. I had no energy, no will, no want to do anything else.

I was very depressed although I tried not to show it to my kids. But I missed them. I missed everything.

To be continued...

 

 

The journey to hell...

This is going to be my tale along this bumpy road of having my bladder removed due to Interstitial Cystitis. This is a long story, a lot of setbacks, a re-admission, and lots of pain. This will be multiple installments as it is a continuous journey.

It's my journey to hell...

But it's not a bad journey cause in the end I fight my way back.

So let's start... Dec 4th was my check in day at the hospital. All was good, I was calm.. almost in a surreal way. Like I knew I was about to face the most complex and scary thing of my life. I was undergoing a 10 hour surgery and would have a lengthy recovery.

But still, it was surreal.

I was taken to my room, I remember exactly 9th floor of the cancer center, room 935.
Honestly it was kinda a day of nothing when I got there. They didn't have orders for me yet so I really just hung out in my clothes watching tv for a couple of hours til things got started. First things of course, the overly sized green gown that could have housed 3 of me comfortably.  The IV that would come to be a pain in my ass when my veins blow every 12 hours. Fluids... hydrate hydrate hydrate
And then.... the dreaded clean out

Why.. because during this surgery, they remove a couple feet of your intestines and conform them into a new bladder or "Indiana pouch" that rests on the inside of your abdominal wall. So your intestines need to be clean. And this entails drinking a GALLON of golytely which is fancy for miralax.

Dec 5.

They took me down to surgery pre op at 6 am. It was quite busy with residents, anesthesiologists, and nurses. It all was kinda a blur. I talked to so many people and I signed my life away several times. I listened to all the what ifs and risks and knew that no matter what the chance of a pain free IC life outweighed all of that.

I kissed my loved ones and they walked away as the anesthesiologist began to do my epidural. After the meds I really don't remember much besides being wheeled to the operating room. I was completely calm.

I woke up in recovery, epidural lasting so not much pain, although they had me on a morphine pain pump and the epidural pump of lidocaine. The surgery lasted 10 long hours. I remember looking down though and seeing the bandages on my stomach. The 3 drains hanging from all sides and all the wires and cords hooked up to me. It wasn't long in recovery til I got to get back in my room.

They tell you from the start that you have to do three things to go home... eat, have a BM, and be on oral pain meds. And believe me they start pumping you full of colace and miralax as soon as you're out of surgery. I was doing good with 1 and 2 out of the list but pain was an issue when they switched the pain pumps to as needed IV meds.

I remember laying in the bed crying in pain. I can't lie, it was painful. I had an incision from just below my chest around my belly button down to pubic bone.
But honestly as soon as we got the pain under control I was ok. I actually went home 4 days after my surgery.

And seriously the ride home was torture! Every bump or crack in the road, I felt 10 times worse. I was drained and weak. I was ready to be home.

To be continued. ..

 

My thoughts

"Love is a human experience not a political statement"

Quite frankly that is the best statement I've heard in a while and I believe in every word. With so much talk and fuss lately about gay marriage and religion and what's right and wrong... I felt I would share my views on this.

You can hate me or love me for my views and opinions, they are mine and I am in no way trying to persuade or push them upon anyone.

Love is love and you can't choose who you fall in love with. Are we so jealous of what other people have in their love that we must make a choice to prove them wrong? Why should it matter if I love someone who is not who you would choose to love?

I don't believe people choose to be a certain way over another or choose to love one sex over the other sex or choose to love both.. if we had the choice why would we choose the harder path, the path that causes more pain and turmoil? Isn't it our natural instinct as humans to choose the path with least resistance?!

There is enough pain in this world, there are plenty of problems and situations that need our attention. Gay Marriage IS NOT one of them! I fully support marriage of all people, love for all people and equal rights for ALL people.

If we can choose to be happy with ourselves and spread that happiness to others then why not choose to do so? It costs nothing but gives so much in return. Love knows no boundaries, no sexes, no colors, no religions.. love only knows love.

And who I love might be different from who you love but again... what does that matter to you?!

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.

Minecraft overload party

This is a long overdue post about Lucas' 7th birthday party.

Party planning has always been a favorite thing to do and having kids makes it awesome.  Even though my kids don't have a lot of friends so their parties are usually small, I still try to make them the best party they could wish for. 

This year, Lucas was all about Minecraft. So his party was so much fun planning and doing.  Pretty much everything was homemade including his creeper cake... which took a long time to get right. 

But it was all worth it, he loved it and the few friends he had come over loved it as well!!

Mother's day

It's Mother's day and I am extremely thankful to be a mom, I love my children more than life itself and would do anything for them.
But it's hard, loving them is hard sometimes, not losing it when they seem to push every button of my existence to the limit, not running away from it all, not thinking the what ifs...
I'm not going to lie
Being a mom is the hardest most selfless thing I do
My needs, my wants, my dreams and wishes and thoughts and sometimes my happiness.. All gets put aside for them.
If I didn't have them my life would be different, I wouldn't be who I am today.  I wouldn't have gone through the toughest times in my life.  I wouldn't have spent countless nights crying myself to sleep, the thoughts of losing them wouldn't flood my mind.
I could have done without losing a child to a miscarriage, I could have been fine without having a child so close to dying so many times and spending weeks and months by his hospital bed. I could have taken a different route in my pursuit of happiness and love.
All the fighting, the tears I've shed, the meetings, the beginnings, the ends, triumphs and losses.
I never imagined I would have to fight so hard for make my child's life easier. Never even thought about IEPs, 504s, transplants, feeding tubes, TPN, central lines, sepsis until I was a mom.
And not just any mom
A mom who has gone through hell and made it back to keep on fighting.
A mom who has seen the loss and had the loss and been so close to loosing. 
My children are my world.  All I do, all I think, all I imagine is for them. 
I make sacrifices for them.
Motherhood isn't for all, and frankly it isn't what I thought it was. It isn't what I imagined when I was a little girl dreaming of my perfect life. It's not what I recommend for everyone.  It is hard!!
Being a mom will be the hardest job you will ever have. Being a mom to special needs children will be even harder and will push you even more to the brink of giving up.
But I wouldn't trade them for anyone else. I love them. I love the person they have made me. They have opened my eyes, my ears and my heart to far greater love than I could have ever known without them.
And I will be forever grateful and humbled to be their mom.
So however you see it, however you see me, however you see them.
It doesn't matter.
What matters is how they see me
And they see me as their mom.
The one who wipes away their tears, kisses their hurts, hugs them when they are sad. The one who will never stop fighting for the best for them.
Their mom. That is who I am. That is what defines me. Them. My children. My heart, my soul and my love.

The reasons I started this blog