Wednesday, August 26, 2015

Feel Better Bag.

You know how you take your child to get a shot and promise an ice cone for afterwards? Something small and sweet to put a smile back on there little faces.
Well, when you have a chronically ill child with oral aversions and digestion issues, the ocational "ice cream" treat just doesn't cut it.....
You see, sometimes my son  has multiple appointments weekly. We've been driving 4 hours round trip to Children's at least once a week plus the normal "well check", shots, etc. For the last 4 1/2 years, I'd promise him a gift from the hospital gift shop. So, now he owns everything under $10 in that gift shop..... half of it's broken, the other half deflated....
After a meltdown from a long day and an indecisive boy at the Children's hospital gift shop a week ago, his home health nurse suggested we fill a bag from the dollar store, put it in the back of the car and every time he has an appointment, etc., he picks a treat from the "feel better bag".
The world is a happier place....or at least our drive home is more peaceful.❤️
AND......He had SO much fun making it!

Sunday, August 16, 2015

Let Him Live.

Every year since my husband and I  got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family. 
We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain. 
When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip. 
When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go. 
All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip". 
Then, during one of our April admissions I talked to one of my favorite Drs on his Intestinal Care team. Long story short, she said to "let him live". Told me all the precautions. He couldn't swim but he could splash once I cover the crap out of the line and dressing. 
It was those words, "let him live" that hit a feeler deep in my heart. 
Yes, we'd have to scope out the nearest hospital. Yes, there was a chance he'd wind up life flighted back to PA with infection, a broken line, etc., etc. (I thought of every worse case scenario). 
Truth is, it would be easier to keep him home. Heck, it'd be easiest to make him a bubble boy! But we didn't. Not because we're irresponsible or selfish but because we need to "let him live." 
In January of this year he was diagnosed with intestinal failure on top of his dozens of other diagnosis'....and the reality is, we don't know what tomorrow brings. 
We hope to give him every opportunity possible to be a boy. To explore and enjoy life outside the four walls of the hospital. 
Is it easy? Heck no. It's hard work! There are tubes and pumps. Puke and medication. 
Just a day trip requires so many supplies and medicines, syringes and stops but this summer was the summer we "let him live."
From the beach to fishing and amusement parks, Case and our little family lived in the moment and were blessed to enjoy the summer together. 
We're there hospital trips, a broken central line and other shenanigans? Yes. Was it because I was irresponsible and not careful, no. It's because this new life, this crazy journey is full of unknowns but those unknowns won't stop us from "letting him LIVE!" 

Sunday, August 9, 2015

Made for His glory.

"Babies are like computer programs. Lots of pieces put together to make one big picture. YOUR baby's programming is all wrong...."-one of my many, many OBGYNs during my very complicated pregnancy. 

My baby was "made wrong"....sick inside of me. No mater how healthy I ate. No mater the fact that I didn't smoke, do drugs or drink, my baby was disabled. He was full of health problems and I prayed. I prayed he'd live. I prayed that if he didn't, I'd have the grace a peace to say goodbye and still exist....I prayed for healing. I prayed for peace in the storm but above all else, I prayed for God's perfect will to shine through the darkness. 
Did I believe God could heal my baby completely? Yes. Did I pray for that? Sometimes but above all else I prayed my heart would stay thankful in ALL circumstances and that this tiny life inside me would bring God glory. 
Fast forward 4 1/2 years. God didn't heal my child and that's okay. I'm at peace with that. Does my heart break a little with every surgery, every procedure, every time they put him under, blow IVs, hold him down? Yes but God can put that back together. He gives me strength along the journey. Sometimes, strength is my only choice. Do I think I'm not Christian enough? Not worthy of a heathy son? Not Godly enough? Do I think God punished me for not being "enough"? Absolutely not. 
My's child was made perfectly imperfect and I'm okay with that. 
John 9:2-3

 2.His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

3 "Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

Sunday, June 21, 2015

An Open Thank You Note to the Teachers of our Daughters.

Dear Teachers that have no idea what you are getting into when my daughters enter your class rooms in the fall,

Thank you. 
When you saw their names on your class list did you know you'd be wiping their tears, listening to their stories of their brothers countless hospital stays and comforting them while he's hours away with mommy having surgery number....I lost count?
You didn't judge me when their hair was un-brushed and they forgot their lunch. You just smiled and got them fed. 
Thank you for being patient with me and sending extra field trip slips and bus tags home. You knew how often I couldn't be home because I was at Children's holding their brothers hand while he fought yeast in his blood, had blood transfusions, tests, tests and tests.....
You wore his t-shirts on the days my girls needed it most and made us a part of your classroom by hanging his pictures on the wall, reading my emails of comfort to my daughter telling her everything is going to be okay. You even let us come in to do a presentation on "Feeding Tube Awareness Day". 
You helped them, you love them, you never stopped rooting for them and their brother. When school ends for the year, you are still praying, still loving and still rooting.
You, teachers have no idea how much you mean to me. To my children. to my husband. 
I'm sorry I wasn't homeroom mom and that I forgot to send snack more times than I remembered...I was busy fighting insurance companies, sitting in ERs and laying on a hospital beds beside a very sick little boy.
You didn't give them special treatment because their bother is sick and they don't always have their momma home. No, you treated them the same as the others and for that I am thankful.
You, sweet teachers have hearts bigger than your paycheck and I see it in your eyes. Thank you for hugging me when I'm in the hall and not judging me when my eyes fill up with tears. It's people like you that keep people like me going. Thank you.
What a crazy journey you got thrown into! Not by chance but because God knew my daughter need you.
When she couldn't have me. When mommy and brother didn't come home from his appointments for days, weeks because he was too sick to leave, you were there to reassure them and listen with your whole heart.
While I sat in those hospital rooms, sometimes in isolation because my little one had some contagious infection, I was praying. Praying that my little girls would weather these storms and come out stronger than when they went in. I was praying for you. Praying that God would give you the grace to keep being patient and loving with us. 
You, sweet teachers are gifts from God and I can only hope that He continues to bless my sweet girls with such amazing teachers as we continue to fight this war of chronic illness. 
Thank you. I will never forget you.


Tired, thankful me.

Friday, May 29, 2015

A Special Needs Baby Changes Everything.

When a child is born with special needs, the whole family is effected. You know the quote, "A baby changes everything."? 
Well, a special needs baby changes everything and everybody. 
We'll start with the mom. 
I went from a mom of three "typical", healthy girls. The Children's Hospital was just a place kids with cancer went to that I'd ocationally donate a dollar to so my kids could sign their name on a little, paper gold pot or rainbow to be displayed behind Walmart checkout lines.
I had a part time job cleaning homes and offices, made home cooked meals almost every night. I signed permission slips on time, never missed sending a snack into preschool and had more than enough time to read stories to the girls, play with them and do all the mommy things I dreamed I would.  
I had regular dates with my husband, spent plenty of time complaining to my friends about the exhaustion of teething and ear infections....and so on. 
Fast forward 4 some years....
I'm am no longer a house/office cleaner. I quit my job when my son was born to be a full time mom/nurse/advocate/hospital bench sleeper/secretary/insurance appealer/ therapist/etc., etc. More times than I'd like to admit, I throw chicken nuggets and fries in the oven or let the kids eat creral for supper because I'm just too tired to cook....
I've driven tens of thousands of miles to and from Pittsburgh Children's hospital and spent so many days inpatient with my son that I could find the cafeteria with my eyes closed. 
I forget to send my daughters snack in so many times that the casual, "you forgot snack again and we had to eat last weeks left overs" doesn't even phase me.....
I lose permission slips and find myself calling the school office between doctor rounds while sitting beside my son's hospital bed more times than I'm proud of. 
My life is one, big, disorganized, unpredictable, beautiful mess. 
By the middle of May this year alone, he'd been admitted 5 times and had several outpatient specialist appointments....
This takes me to the siblings. 
They went from their biggest concern being "Will mom make me eat the peas she made for supper?" to, "Will mom and Case come home from the ER tonight or will I go days before I can even visit them at Children's..."
I've kissed their teary faces goodbye more times than I can count and answered questions like, "How long will you be gone?", "How sick is he?" and, "Are we going to spend another Holliday in the hospital?" With, "Sweetheart, I really don't know but what I know is, everything is going to be alright." Then I silently prayed, "Oh Lord, please make everything alright and guard their tiny hearts."
They don't know if next week mommy will be at their Gymnastics practice or if she'll be with their brother while he fights a central line infection. 
Their lives turned upside down and normal is no longer a thing. They've had to grow up quicker than I would have liked and mature beyond their years. They know, have seen and live with the reality of chronic illness and it's not pretty. 
They've seen their brother grey while his heart rate rose and the nurse bolased fluids into him. They've seen more poke, IVs and brutal surgery recoveries then their little hearts could handle. 
Through it all, they amaze us. Their compassion, love and understanding of other children with different abilities is remarkable. 
They know all about feeding tubes, central lines and growth hormone shots. 
They've done presentations to their classes during Feeding Tube Awareness Week and talk freely about such things. Things I knew nothing about until we were flung into the Special Needs life. 
Their lives are different from their friends and that's okay. They are so loved, educated and blessed. 
This brings us to the dad, my husband who's stuck by me through my crazy breakdowns, pity parties and stress eating....
His life was forever changed the moment the specialist read our 24 week ultrasound and said, "everything isn't okay" and the words of well meaning strangers that said, "boy or girl never mattered to long as it's healthy" cut like a knife. The reality was our baby wasn't healthy and my husband stood like a strong rock as the waves of this new medically fragile life style hit hard up against him. 
He's strong, works hard, even when he'd rather be at the hospital with me. 
He's learned how to throw lunches together in a hot minute and brush knotty hair on the way to the bus stop.  
He's now my councilor, my strength and the daddy to a boy he's watched hurt, cry and suffer. Something a daddy should never have to do. 
He's watched his little girls cry while missing mommy and has been Mr. Mom during long hospital stays and sleepless nights. 
He's been torn in three directions between the hospital, the girls and work while somehow manages to single handily financially supporting us all...

It's true. A baby changes everything....
A special needs baby changes everyone. 
We aren't just a family with a little boy with special needs. We are a family that sticks together like glue and knows that even when the days are hard and the future is unpredictable, we have each other. 
We take each day with stride and try not to sweat the small stuff because we know how hard the "big stuff" can be.

Saturday, April 11, 2015

Case t-shirts are now available!

Hi guys!

Case is inpatient (again). We are on day 8 of fighting yeast in his central line. 

I have some good news though.....We have some awesome t-shirts, etc for sale to help with his on going care!

Saturday, March 14, 2015

The F word.

Let's talk about one of my least favorite F words in the world.....FAIR. I mean really, fair doesn't exist....One of my least favorite parenting moments is when one of my kids come running to me and in the whiniest voice declares, "BUT IT'S NOT FAIR!"  My immediate response is, "You are correct and life will never be FAIR."
I have to admit though, sometimes I wallow in self pity over the looming need for life, things, circumstances to be fair. It's an unachievable goal, a thorn in the sides of most special needs moms. 
It's not fair! It's not fair that our child spends a Saturday afternoon being shot with growth hormones while his friends are at birthday parties and playgrounds. It's not fair that we envy the mom who's biggest worry is an ear infection and how many GMOs are in their daughter's lunch while ours are, "How can insurance deny a hospital stay that happened 10 days ago?! Will his intestines ever work? Will this outpatient appointment turn into an extended hospital stay? Will his next surgery succeed or fail? Will my 'typical' children have emotional baggage from all of this?...." I could go on. There are a million things to worry about, think about, stress me....I know. 
Truth will never be fair, not for any of us. I will never have the fourth child I dreamed of (before diagnosis) I will never look at tricycles, zip-up pajamas or water parks the same way again. My child may never use those things the way others do's the positive in this otherwise depressing post:
"Every little thing is (always) going to be alright".....
There are rainbows after the storm. There are tak-n-bake pizzas on my porch because my friends know how "unfair" life can be. There will always be that friend who listens to me cry about the nasty service rep I waited 45 minutes to talk to or the ride that my four year old was too short for even though two year olds were on it..... She listens becauses she knows that my hurt go way beyond service reps and amusment parks. Sometimes, I still need to grieve the loss of the life I imagined. The rumor that we were given this amazing child because we are strong enough to raise him is false. God loaned us Case because we are blessed enough to see the beauty in an unfair life. God's grace is greater than my faults, my fears, my anxieties. I'll  never have a perfect day. Most days, I'll  regret words I said md wish I could fix everything but.... there will always be grace. There will always be that subtle reminder to "be still and KNOW that HE is GOD."
Together, our broken pieces make a whole comunity. We need each other and we need to petition to get the word "fair" taken out of the English language.😉 Just kidding.... 
At the end of an unfair, exhausting, problem filled day, there is always grace abundant and a friend willing to bring pizza. We are loved and we are blessed.  Thank you for loving our #VerySpecialCase and following this crazy journey. 

Thursday, January 1, 2015

A Beautiful Year. A Beautiful You.

2014 was a beautiful year. The good, the bad, the hard....It started with surgery #7 and ended with surgery #10. 
Case started school in January unable to draw a straight line and ended writing his NAME!

Case's biggest surgery of his life happened in May. His scull was taken out of his head and reconstructed....Not only did he rock it, but he excelled! His Chairi Malformation disappeared! He gained 7 pounds, spoke much more and ate more than ever once his brain starting growing properly!

Beautiful Case. He's worked so hard, grew so much and met some amazing people. 


Beautiful news casters..... 

Amazing men that changed our lives. 

This year held so many hospital trips, blood draws,appointments and tests. 

He rocked them all!

2014 was the year of the Taco! We finally made the plunge and adopted a dog from a local shelter in November. We named him Taco. He completed our little family. 

We've been so very blessed in 2014. It was hard. It was beautiful. It was one amazing year. Case was chosen to be a "Wish Kid."  We are in the process of his wish to go to Disney World being granted for April!

Throughout the hard....A surgery failed, a brain reconstructed, a dangerous Hypoglycimicic drop, several hospital stays, etc. etc. there were blessing unimaginable! Our community rallied together, our friends and family never left our sides. They put us back on our feet. They are our heroes. 

From news coverage to a billboard and parade, famous Case became more famous and our community never ceased to amaze us!

Because of our beautiful facebook community, our Johnstown community and all of our amazing friends and families these two little boys were able to collect 700+ Christmas ornaments for Children's Hospital and the Ronald McDonald house. 

Through the good times and bad, 2014 was a beautiful year with a beautiful Case! Thanks for being part of it!

Here's to one kick-butt 2015! Who knows, maybe we'll find Case's main diagnosis!
Either way, one thing is for sure, through the grace of God and the love of others, Beautiful Case is going to have yet another Beautiful year!!!