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

The monsters

"I'm friends with the monsters under my bed,
get along with the voices inside of my head,
You're trying to save me
Stop wasting your breath
You think I'm crazy,
And that's not fair"

This song has a strong feeling in my heart for my son. To be only seven he already battles depression and anxiety and most days he hates himself. His inner struggles are bad. He says he is bad, he hates his brain, he hates that everything that he does he can't control and it frustrates him.
This is his life. The meltdowns that look that like a two year olds temper tantrum, the difference is... it's not for attention, he can't control them and you can't stop them. He struggles to make sense of his world, his self. He feels he let's people down and he feels so different from everyone else. He thinks no one likes him.
Today was hard.
Today he broke his brothers heart. 
Today he scared me more than I thought I could be.
I am not going to explain everything that happened because we need to work through this first. We need expert advice from his trusted and loved psychologist.  But he needs prayers for comfort and peace. He needs guidance and assurance that everything will be ok in his world.
That's all I ask. He's only seven and shouldn't have to feel this way about himself. My heart needs some comfort. My mommy heart is breaking for my sweet boy.  I can't explain how hard it is to watch him struggle with himself. I hate to watch him cry and tell me he doesn't want to be here. That he's a bad boy and no one loves him.
I feel helpless and sad. I want to help him, I want to make him see that he is wonderful and perfect. I couldn't love him anymore than I do now no mater what. No matter who he is or was or is going to be. I just want him to understand this. I need him to understand that he is loved and he is needed.

I sure do love her

This is an amazing story and tribute to the most beautiful little girl I know and love. Even though I have never met her, my feelings of love and hope grow stronger the more I learn about her. This amazing little girl is a blessing to all that she meets and is so special. Through a very special group called I Run 4, I got to be matched with her and from that moment, she has given me strength and courage through all that I do.

Her mom did an amazing job sharing her story with us

Our daughter Arianna Ferrari was born on 8/9/2013. She was diagnosed with Down

Syndrome in utero at 20 weeks. I had declined any elective testing early in my pregnancy. When my husband and I decided to try for a baby we made a decision that we both believed was so important and special that no matter what happened (and realizing typical baby is never ever a guarantee) having an abortion was not an option.  I had decided to have our anatomy ultrasound so we could find out the gender

. At this exam our specialist found Arianna had an echogenic foci (white spot which is a calcium deposit) on her heart. This causes no issues and goes away in utero on its own but it is a market for Down Syndrome. The doctor was not concerned as everything else looked great. We decided to take the MaterniT21 test just to rule out Down Syndrome. We had advised our parents and were trying to stay positive and hopeful.

When the test results came back positive we were all floored, even the doctor. I found out while and work, my co-workers were very supportive and understanding and let me go home for the day. I was scared to tell my husband, I did not want to upset him. I was dealing with the news all on my own, making phone call after phone call to our family and friends and with each phone call my emotions got better as everyone was so supportive. We have amazing family and friends, in the end we were happy to be given the chance to bring a baby into this world (as so many people these days can not). Breaking the news to my husband was the hardest. By the time I told him I had already accepted the situation and was able to be there for him. It was hard to say the least. After going through a lot of emotions and questions the pregnancy went on an all was well. The day we had Arianna the first thing we did was check her palm for the simian crease which she did have and confirmed to us at the moment that it was really true.

From that day on our lives changed forever. Arianna was healthy and was such an active little newborn. Most days I hardly thought about Down Syndrome as I was consumed with being a first time mom. She loved tummy time and was holding her up very early as well as rolling over from tummy to back at 6 weeks old! Although as the months passed and she reached 5 months old her progress started slowing down.

People with Down Syndrome have decreased muscle tone which makes it harder for them to roll, crawl, walk, talk, ect. Arianna now goes to Physical Therapy once a week and has an Early Start teacher come to our home once a week as well as extra doctor appointments and check ups. I am responsible for practicing Arianna's physical therapy for approximately 2 hours a day, everyday. Arianna works extremely hard and there are days I wish we could just cuddle and not "have" to do certain activities. I try to make sure we relax on weekends and just enjoy being a family! She has already taught us patience and persistence. We recently just got her drinking from a straw cup which took 1.5 months. Just when I want to give up I know I can't because she will get it and just needs me to keep pushing and be patient.

Our lives have so much more meaning with Arianna in it. I am excited for our future, scared for issues we will face and shitty people who will comment, but in the end we just want to make Arianna happy and give her everything she could possibly want in this life. Arianna has the ability to defy expectations and we know she will actually enjoy life and the little things us adults are too consumed with work & stress to even notice.

I am so jealous & proud she gets to have this amazing life.

written by Karin Ferrari

Arianna is a precious, beautiful, perfect little girl and she teaches us that Down Syndrome does not define who she is, she is a blessing and she teaches us love <3 p="">

What? When did this happen??

Yeah I've been asking myself this question for years... When did my little 4 lb miracle baby get so big?
He is growing up on me and I am so not prepared for this. Why why why can he just not stay little?

Lucas,
I can so easily remember finding out I was pregnant with you, after a year of fertility drugs, pills, shots and after a round of artificial insemination you were made.
But you made sure that your appearance was going to be just as dramatic as your conception.. trying to strangle yourself in the womb. Such a lucky day when the doctors found out. So lucky we found out in time. If not, you would not be here.
From rushing to the hospital after the doctors telling me you weren't moving to the ride down to the operating room for my emergency c - section. 
Life is a roller coaster and you made sure I was in the front row.
Emotions I hadn't prepared for as you came into this world eight weeks too soon. Seeing you with wires and tubes and lights and not being able to hold you.  To leaving you at the hospital in the care of nurses and doctors for 4 long weeks.
You are certainly a miracle baby.
And now my soon to be 7 year old. Your struggles are deep and I only wish I could see the world the way you do. I wish I could feel the things you do, how you do. To help you interpret and survive in this world.
The days I feel like giving up, I think of you. It would be easy for you to give up, the struggles you face everyday head on and keep going. You teach me so much.
You will always be my world. I will stop at nothing to make this world easier for you, to help you with your struggles. I will be your strength when you can't stand, your voice when you can't muster the words and your shadow when you get the confidence. 

Suffering

Almost a month ago I was diagnosed with a painful auto immune disorder. I've actually been dealing with the effects of it for over a year and maybe longer but finally saw the right doctor and got diagnosed.
So I have Interstitial Cystitis, a painful bladder and pelvic disorder. But honestly it affects so much more than your bladder. It causes inflammation in your bladder walls and surrounding muscles, causing pelvic floor dysfunction. To say that is painful, is an understatement. It hurts everyday, all day, with no relief. I have to urinate almost every 30 minutes and can't empty my bladder so it always feel like I have to go even if I just went. And my bladder spasms causing me to not be able to go because my body fears the pain.
I have been through so many medications over the past month. I have tried bladder instillations, pain meds and now physical therapy. I am taking more meds than I have ever taken. I just turned 30 this past week and yet I feel like a 70 year old. It sucks to be quite honest. To try to function like a normal human being is unbearable some days, but I have to and it takes all I have to do it.
I am also coming to terms with having a chronic auto immune disorder that drastically changes my life. I have to follow a very strict IC diet, that restricts me from eating and drinking almost everything. And I constantly get asked how I am feeling..
I really don't want to talk about it, I hurt. It feels like I am being sat on by 400 lb person while they are stabbing a hot knife in my lower abdomen and twisting it over and over and over again. Do you get the picture?? If you have ever had an UTI, think about those symptoms 24/7 and 10 x worse. Don't tell me you understand cause you don't. And don't ask me if I am going to do something today other than lay on the couch with a heating pad on me. There is no way to explain to you the emotions and pain I am feeling.
I try not to whine and complain and honestly most days you will never know just how bad I feel. That's the mommy in me I suppose. I will put my needs aside because I have to. But everyday is tough, everyday sucks and hurts.
So now I'm living with IC, actually no, I am suffering with IC.

Our Journey to The Piedmont School

For us, choosing The Piedmont School was no contest, we knew that public school just wasn't an option for our son.

We tried it, Lucas started school when he was 2 1/2 years old, and went through the 2's and 3's class at his local church preschool before we really saw any differences that stood out. During his first actual pre-kindergarten year though, we noticed he wasn't learning like the other children, his papers would come home undone, and his book bag would just be filled with taped together pieces of paper that he played with while the other children did their work. By the end of the year, his teacher recommended that he repeat pre-k, becasue he wasn't emotionally ready, and he definitely wasn't academically ready.

So once again, after lots of thinking and consideration, he tried pre-k again. We thought this time it would be different, maybe last year he was just too distracted; his younger brother was very sick and going through lots of long hospital stays and treatments and it was very hard on Lucas. But by halfway through the year we knew it was not different, and he was really struggling. We could see how hard it was for him to just simply write his name, and he was not able to keep up with the other children. He still did not know his alphabet or or how to write any letters. He could not remember multi-step directions for schoolwork, and he needed the constant one on one attention to complete assignments. There were 20 other children in his class, and he was falling so behind.

So by the time we had his parent/teacher conference we were worried. We were told that although he still was not ready for kindergarten, the school could had to send him on. This is when we started our journey to find the perfect school where he could learn and grow.

Luckily for me, someone mentioned for me to check out The Piedmont School. I had actually never heard of the school, I was familiar with Noble Academy and that seemed like a good fit and what we were looking for. But, The Piedmont School was closer and was smaller so we decided to look into it.
It was by far, the best decision we made. I went and talked to the Dean of the school and the kindergarten teacher and was so impressed. Lucas even got to go and spend a day as a kindergartner, and he loved it. Which to me, really meant something.

Getting him to school over the past 2 years had become increasingly harder, he was very aware of his differences and that he didn't know as much as his classmates. He was frustrated, which only added to behavioral problems we were facing. And we were getting no where with his education. So we knew we had to make a change.

Once we made the decision to send him to The Piedmont School, we had his psycho-educational testing done. Through his testing, it became abundantly clear why he was struggling in school. And why, sending him to The Piedmont School was such a good idea.

His testing showed that he not only showed us why he was struggling but just how far behind he was compared to other children his age. It was an eye opening experience for us, we knew he was having trouble but we were not expecting the outcome we got. Lucas was 6 years old and performing at a 2 year old level, despite being in school since he was 2 1/2. To be honest, I was heartbroken.

Lucas had been diagnosed with Dyspraxia when he was 5, and little did we know then what a big impact it had on him or really anything about the disorder. He was also diagnosed though his testing as having dyslexia, dysgraphia, ADHD, Sensory Processing Disorder and anxiety issues.

We know that public school is just not an option for him right now, the strides he has made while in The Piedmont School are remarkable. His class is made up of only 4 other children so he gets all the one-on-one attention he needs, he learns based on a plan that is made just for him and he gets the accommodations he needs. His teacher is awesome and goes beyond what I ever expected, and he LOVES her. We still have struggles getting ready to school and some days he just doesn't want to go but once he gets there, he has fun and he learns without the constant fear of being different compared to everyone else.

Choosing The Piedmont School was definitely the right choice for us, Lucas still has a long journey ahead of him, and he has many obstacles to face and overcome in his life. But for now, I know that as long as he is going here, education is not one of them.

For information on The Piedmont School please visit their website. The Piedmont School
And for more information on Dyspraxia please visit Dypraxia USA

Holding back tears

As I am sitting up watching the show Parenthood, trying to hold back tears as Max is having a breakdown because he can't understand why the other kids laugh at him.
It hits so close to me, I have these fears fears for Lucas. He tries to make friends and he tries so hard to play with other kids he doesn't know.
I worry so much that this will be him in the coming years. That these kids will make fun of him and laugh at him, that they will think he is weird. I worry he will think this of himself. He doesn't have the capability to understand the complexities of relationships. He learns by memorizing and there is just no way to memorize every social interaction. He already has moments where he says he is weird and he hates himself. He has told me multiple times no one will come to his birthday party.
I feel so bad for him. I just want to hold him and protect him forever. In so many aspects Dyspraxia can be a gift but in so many ways it can be a nightmare. I just wish life was easier for him. I wish people weren't mean.

Just a reflection

As I sit back and reflect on how much my boy has grown this year, I can't help but still worry about all the struggles he has yet to face. He is over halfway through his kindergarten year, and I am so proud of how well he is doing in school. I am thankful we found a school that fits his learning style and can accomadate to all the extras that he needs in school. Teaching him isn't easy, but again it isn't easy being him either.
He struggles so much with everyday life, the simpliest things can ruin his day and honestly make my life hell.
But I am so proud of him and the little man he has become. He loves his brother and for the most part, he really tries to get along with him. I know he hates when Zach accomplishes something that he hasn't yet mastered. And he gets his feelings hurt so easily, he is just very sensitive. I think this is hard to explain to people. He literally wears his emotions on his sleeves, he can go from happy to sad and back to happy again within minutes.
I worry about his future.
School is hard for him, friendships are hard, life is hard. Our weeks are filled with therapy appointments, psychologist appointments and school. I hope all these therapies help him in the end. I hope they help him cope with his feelings and learn to manage his anxieties and behaviors.
I hope he knows how much I want him to succeed, and how much I love him.

Vday swap box

      Let's show some Valentine love, back in January I joined up with Rachael from The Rachael Way, Ashleigh from The Darling Prepster and Mandee from Life, Chaos and Quotes for a Valentine's Day swap box. I usually don't get any gifts so I thought this would be fun.
 

"

I got matched up with an awesome blogger and new friend Ellen from Ask Away Blog

We got to email each other for a few weeks, get to know each other's likes and then pick out a Vday gift for them. It was really a lot of fun. She is awesome and her blog really rocks so make sure you check it out!

 

I loved my gifts she picked out for me. And they all came individually wrapped in pretty pink paper. And also a sweet little note (or for Vday, we will call it a love letter) 

 

 

I loved opening up all the little packages, and my boys even helped. First of all let me just say, she really nailed it. I never get anything for myself or take time for myself so I needed all of these gifts.

 

I have already worn my shirts several times and my lotion stays in my car, because I apparently always realize my hands are dry when I'm driving. And there was a cool little strap you hook to the back of your phone to help you hold it one handed.. yeah totally love that.

Thanks Ellen!

 

                                                                                                          

the day my life changed

The day that changed our lives took place in the hospital where we had taken Zach for an intestinal transplant evaluation. He had been surviving by TPN through a central line in his heart for the past 8 months, and before that through feeding tubes in his stomach and intestines. He was only 2 years old, and had spent most of the past year in the hospital without being able to be a kid. And even when he was out of the hospital, he was confined. Confined due to tubes in his body and iv lines being hooked to heavy bags of liquid nutrition and bags of fluids, and due to the risk of illnesses because his immune system was so greatly compromised. His IV pole followed him around the house, from the time he slept in his bed to the bits of time he had energy to play. He was always hooked up to some sort of pump.

Zach had intestinal failure with pseudo obstruction episodes, which meant that his intestines were no longer working. His stomach didn’t absorb or digest formula anymore and was hooked up to a bag to drain the fluids out of it 24 hours a day. And his intestines no longer tolerated the enteral feeds except at a very slow rate to basically try to keep infections down. When his pseudo obstruction episodes hit, he would vomit and gag uncontrollably for hours and days, and be in tremendous pain. He would have to have his stomach hooked to a suction machine to try and prevent some of the vomiting.

His days at home were always short lived, the fevers and infections always returned, FAST and more furious than before. His hospital stays included blood transfusions, surgeries, and high powered IV antibiotics. Never the life we imagined for our sweet boy. We took him to several hospitals in attempts for answers, and that is when our lives changed.

He had been sent to Pittsburgh for an intestinal transplant evaluation, a very invasive and dangerous surgery. There we saw a neurologist who performed several tests and told us that the probability of Zach having a progressive and fatal disorder that in most cases kids diagnosed this young don’t live past 5 yrs old, was very high. And at that point, the doctors decided he was not a candidate for a transplant, they could not do a transplant knowing that it would not make a difference in the end. They decided there was nothing they could do to help us.

Shortly after that, we heard from Make a Wish. Zach was going to get a chance to be a kid, and to forget about all the illness, and hospital stays and medications for a week. Remembering the day they came to the house to ask this sweet 2 year old if he could have or do or be anything, what would he choose. He knew and answered without a doubt that he wanted to see “Mickey Mouse House”. The smile on his face was priceless. He wanted this, he needed this so much.

During the months while we were waiting on his Make a Wish trip to be finalized and planned, Zach was hospitalized several times a month due to sepsis. He spent many days in PICU hooked to machines and pumps, and having his central line replaced had become routine. But we also learned that his liver was showing some damage from the TPN and he was losing his vascular access. He already had lost of his IV access, so when it came to removing and replacing his central line, it was very risky.

So his doctors decided that though he was not a candidate for a transplant, we could try intestinal rehab in hopes we could force his intestines into working again. Which basically meant that for 2 months, they slowly went up on feeds through his intestines to force them to work. So for us that meant, sitting beside my sweet boy as he vomited, gagged, screamed in pain and slept and not being able to do anything to help.

Zach had been through so much in his short life already and this seemed like to us total torture, but we went through it. It was our only option at this point. If he lost any more central lines, it could be the last. Every replacement meant another surgery, another anesthesia, another race to get it him surgery before his sugar dropped to dangerous levels. Every infection meant new bacteria, more antibiotics and antibiotic resistant bugs. He was in such a dangerous place with his health. When he got sick he could go from normal to 105+ fevers in a matter of minutes, and with his fevers came his autonomic dysfunction symptoms.

So we went with the plan, we drudged on through the pain, through the vomiting, the screaming, the heart break. It was the longest 2 months and so hard to sit and watch your child suffer.
In retrospect, I am glad we did, he survived. He got to come home with no central lines, surviving
on enteral feeds alone.

To explain my feelings during all of this, is simply not in my capability. To be told that your son would not survive and to see him in the state he was in so many times was unimaginable. I have never been a person to show my emotions to everyone. I would wait till I was in the car on the hour drive back to my see my other son, who would have to go days without seeing me, and I would cry. I found myself in love with a song by The Band Perry, If I die young.
Something I never wanted to imagine but was so much a reality. And I prayed, it's all I could. I felt helpless and alone. Trying to talk to friends or family was a mess, no one completely understood what I felt.

February 13th marks 2 years since Zach came home from the hospital after his rehab was over. 2 years since his central line was removed and he got his life back. 2 years of not being afraid today would be the last day I got to hold him or see his sweet face.