Sunday, January 7, 2018

Hello My Name Is.

Hello my name is warrior
I am fierce and strong. I fight battles I never dreamed I would have to fight. I am fearless even when I'm afraid and fight until the battle is won. I run on love, adrenaline and coffee. 
When the day nears it’s end, I wipe the sweat off my brow, close my eyes and rest. For tomorrow, another battle may rise. 

Hello my name is Momma Bear.
My cub is my world. You mess with him, claws will come out. I do not walk around looking for a fight. I am content caring for my cub and spending my days as peacefully as possible. But....if you fight me, I will fight back. I will appeal and appeal and appeal when I know something he really needs is being denied. I will put my foot down and insist he gets the surgery, medication, nursing hours and respect he so very much deserves. I will roam the lands in search if the best doctors, insurance and treatment. 
I'm not an angry momma bear but I will roar when I need to. 
Until my last breath, I will tirelessly care for, fight for, and protect my cub. 

Hello my name is Dreamer
I will always dream of what my son will become. I dream of a world that accepts, understands and appreciates children and adults of all abilities. I dream of all he can be and am okay when not all of my dreams come true. Sometimes, my dreams for him change and that's okay. I will always be a dreamer, dreaming up the beautiful man he will be knowing that dreams change and nightmares exist. 

Hello my name is Overcomer
I prevail over all circumstances big and small. I've overcome anxiety and fear, looking it straight in the eye and telling it I don't have time for such thoughts. I have fought threw and over come long hospital stays, grim diagnoses, IEP meetings, surgery recoveries and surgery fails. From the minute I saw my baby, sick and frail I knew....I have been called to be an overcomer. 

Hello my name is Peaceful
Sometimes, shit hits the fan and I'm up to my neck in chaos. I sit and breath. At that moment, all I need is to breathe in and be at peace with the imperfect. I breathe again and and white knuckle every bit of peace around me. I nod my head and say, "I'm okay". I make peace with my circumstances. This is my new normal and although I fight battles daily, I will never fight the fact that my child was born perfectly imperfect. 

Hello my name is Mom
Above all else I am a mom. A mom like you, fighting for all my child deserves. Protecting him until my last breath. Dreaming of all he can and will become. Overcoming heartache, sleepless nights and worried filled days. A mom that has made peace with the life she was given. 
When you look at me, don't pity me because I am a special needs mom. Celebrate with me because I was given the most important job in the world! Even on the toughest days, wear your name proudly and warrior on sweet momma, warrior on. 


Sunday, March 19, 2017

It's Okay Not to be okay.

It's okay not to be okay. 

You: "How are you?"
Internal me: "I might burst into tears.... It's been a rough week and it's only Wednesday. I've caught vomit, stuck a needle into a port, tracked a fever, spilled meds, hooked up IV fluids, make 600 phone calls, worked till 5 each day, tried to cook diner and straighten the house. I've fallen asleep waiting for the night nurse to come when I know there is so much more to do.... All the while, I've tried desperately to make sure my three other children felt as loved and "normal" as possible... Do you really want to know how I'm doing? I mean....REALLY? Will you give me "advice"? Will you tell me how "strong" I am? Will you say, I don't know how you do it? OR will you just look at me with a blank stare because, really you thought I would just say..."I'm okay."?
I give you a smile and say, "Good. I'm good, you?"
Now that I'm 6 years deep into the crazy, beautiful, chaotic, blessed journey of raising a medically chronic child I've realized something... IT'S OKAY NOT TO BE OKAY all of the time.
A few months or so, a coworker asked how Case was. After rambling for five minutes about Intestinal dysfunction, appointments, vomit, Drs, and insurance I looked at up and said, "oh. I'm sorry. Should I have just said 'okay'?." The answer was, "No. I asked because I wanted to know". 
The truth is, I'm not always "okay". I have days when I think I can conquer the world. Days where I go to bed thinking, "I've got this." Then there are days (more often than not) when I wonder if it's possible to die of exhaustion. I wonder if my girls are faring well. I wonder if I'll ever be completely "okay". 
Somehow even when I'm not "okay" it's okay. This crazy, chaotic life is strewn with beautiful. 
A beautiful husband who's always there at the end of the day to tell me "We've got this". A beautiful job that keeps me grounded and gives a a glimpse into lives just like mine, mom's that aren't always okay and you guessed it....that's OKAY! Four BEAUTIFUL children, one that was made perfectly imperfect and three that have grown into lovely young ladies that see how beautiful different can be. 
The reality is, we aren't born strong. Strength comes on the journey. I wasn't hand picked to have a special needs child because I'm better than a mom of typical children....I don't know why God picked me to be the mother of this amazing boy but I know that somehow it will all work out and in the end, the only person that expects me to be perfect is me. 
It's okay not to be okay.❤
 

Monday, November 7, 2016

"Love, you're not alone, cause I'm gonna stand by you."

Dear son,
5 years, 11 months and one day ago, they told me you would die. They told me were broken. I sat with your dad on the wrong side of the desk at the specialty OBGYN's office, hot tears falling down my face praying they were wrong. The words from that day are seared in my brain forever. They changed me. They made me stronger. They hit me like a hard punch to the gut taking my breath away. All along, I knew the words were coming. I knew you were sick but nothing prepared me for the words, "prepare for a burial". Nothing. 
In a way, that fairytale idea I had with my previous pregnancies that everything would always be okay shattered like a piece of broken glass that can't be put back together. 
Every year, around this time I feel it. I didn't even realize why I'd been acting so crazy the last couple days till "Stand by You" by Rachel Platten came on the radio and I cried like a baby. 
Tomorrow, we head to a state 4 hours away looking for answers. I'll take take you, my almost 6 year old, very alive son for your 30 something anesthetic procedure and pray it's not in vein. 
I'll hold the mask over your face until your eyes close and your body becomes limp. I'll kiss your head, whisper a prayer and wait. Maybe I'll wait another almost 6 years for answers, maybe a lifetime but through it all..."I'm going to stand by you. Even if I can't find heaven, I'll walk through hell with you." 
Son, even on the darkest days, I'll always be by you. I'll fight for you. I'll believe in you. I'll never stop loving you. You have made me better. You've shown me a love I didn't know existed and a strength I didn't know I had. 
Thank you,

Mom



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".
BOOOM!
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 child....no...God'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.

Love,

Tired, thankful me.