My CF Mommy heart is hurting... so here’s some real talk:
The past few months have been so difficult for the Cystic Fibrosis Community. We have lost so many young lives... some I never knew, others were truly close to my heart. My heart and mind are overwhelmed with grief for these families who have had to hold their kids in their arms one last time and say goodbye.
As a parent of a CFer, you have dedicated everything in your life to them.
You have lived in hospital rooms, endured the never ending beeping of IV poles.
You have balanced more medications than a pharmacy.
You have learned to administer home IV meds.
You've learned how to navigate through a hospital better than the staff.
Doctors have become friends, nurses have become family.
You have comforted your hurting, coughing, vomiting, crying, scared child.
You have handed your tearful child over to surgeons.
You have felt your heart break over and over again when you hear words like pseudomonas, stenotrophomonas, mycobacterium Abscessus, B. Cepacia come out of the mouth of doctors.
You have cried more tears in hospital bathroom showers than you care to admit.
You will do anything in your power to make them feel better.
All the while... you know that your best efforts will NEVER be enough.
It's isolating.
It's discouraging.
It's devastating.
But you press on.
You're a Parent after all...that's what we do!!
You endure each moment for those beautiful hazel (or green or blue) eyes looking to you for strength.
You find a way to smile when you are dying inside.
You find the ability to say "You're gonna be ok baby girl" even when it's the hardest words you can whisper.
You remind yourself that Conway Twitty was right when he wrote:
That's my job,
That's what I do
Everything I do is because of you,
To keep you safe with me.
That's my job you see.
You have lived in hospital rooms, endured the never ending beeping of IV poles.
You have balanced more medications than a pharmacy.
You have learned to administer home IV meds.
You've learned how to navigate through a hospital better than the staff.
Doctors have become friends, nurses have become family.
You have comforted your hurting, coughing, vomiting, crying, scared child.
You have handed your tearful child over to surgeons.
You have felt your heart break over and over again when you hear words like pseudomonas, stenotrophomonas, mycobacterium Abscessus, B. Cepacia come out of the mouth of doctors.
You have cried more tears in hospital bathroom showers than you care to admit.
You will do anything in your power to make them feel better.
All the while... you know that your best efforts will NEVER be enough.
It's isolating.
It's discouraging.
It's devastating.
But you press on.
You're a Parent after all...that's what we do!!
You endure each moment for those beautiful hazel (or green or blue) eyes looking to you for strength.
You find a way to smile when you are dying inside.
You find the ability to say "You're gonna be ok baby girl" even when it's the hardest words you can whisper.
You remind yourself that Conway Twitty was right when he wrote:
That's my job,
That's what I do
Everything I do is because of you,
To keep you safe with me.
That's my job you see.
It’s easy to forget about those fighting this endless battle, because unless you are personally connected to a CFer and/or their family you never hear about these struggles. It's also very hard, as a parent, to express our thoughts and feelings to those who, even with their best efforts, can never fully understand.
Over half... let me say that again... OVER HALF of those with CF will die before they even turn 30!!! Out of over 30,000 documented cases in the USA... ALL will result in an early death. But over 15,000 of those will not live to see high school graduation, college graduation, and will never experience the amazing gift of falling in love, or starting a family. They won’t even have the opportunity to complain about paying bills!! The things many take for granted or complain about, they will never experience. These Warriors just rejoice with each breath. They have learned to appreciate the little things and be grateful for even the hard things because, unlike so many of their friends that have passed away, they have been blessed with another day of life.
May I be blunt with y'all... Stop complaining about the mundane and start being grateful! Stop with your "FML" statements because something didn't go your way! As I tell my kids... SUCK IT UP BUTTERCUP!!! Life is way too precious to complain about the little things!!! Take a big deep breath!! No really... breathe in...hold it! HOLD IT!!! 3, 2, 1... Now let it out! You are among the living...act like it!!
Over half... let me say that again... OVER HALF of those with CF will die before they even turn 30!!! Out of over 30,000 documented cases in the USA... ALL will result in an early death. But over 15,000 of those will not live to see high school graduation, college graduation, and will never experience the amazing gift of falling in love, or starting a family. They won’t even have the opportunity to complain about paying bills!! The things many take for granted or complain about, they will never experience. These Warriors just rejoice with each breath. They have learned to appreciate the little things and be grateful for even the hard things because, unlike so many of their friends that have passed away, they have been blessed with another day of life.
May I be blunt with y'all... Stop complaining about the mundane and start being grateful! Stop with your "FML" statements because something didn't go your way! As I tell my kids... SUCK IT UP BUTTERCUP!!! Life is way too precious to complain about the little things!!! Take a big deep breath!! No really... breathe in...hold it! HOLD IT!!! 3, 2, 1... Now let it out! You are among the living...act like it!!
These CF warriors that recently passed were teens and in their early 20’s!!! This is unacceptable!!! They never even had the chance to live...they were just kids!! As a mom of a 12 year old CF fighter this is especially disheartening. Emma is half the age of some of these amazing people.
Friends, the bottom line is... WE NEED A CURE... we get so excited with medical advances, but it's not enough! My CF Mom friends that are walking the same road I will walk, are now burying their children!! These moms that I have come to know and love are left with a hole in their hearts that will never be filled. I was once told that when you lose a spouse, you are a widow. When you lose your parents, you are an orphan. However, there are no name for a parent that has lost their child, because the grief is to difficult. There isn't a word in the English language to express the pain.
Through all of the pain and my tears as I type this, one things remains true for me. It's the only thing that gives me comfort in the midst of the storm we live in. God is good!! Yes you read that correctly!! God is good!! I have said over and over, that I know He chose Matt and I to be Emma's parents. I am so thankful that He trusts us with her. I am forever thankful for His provision, faithfulness, peace and comfort. I am thankful for the support He has put around us and I am thankful that He loves Emma more than I could ever think or imagine. I am astounded that He can take such a horrible situation and use it for His glory!! God is good y'all!! He has the power to carry us through each day if we let Him!! Even when we are weak, He is strong. So let's live each day to the fullest... for we are not promised tomorrow!!
"Death is inevitable. Living a life we can be proud of is something we can control." CF Warrior and founder of the Claire's Place Foundation, Claire Wineland. Claire passed away Sunday after suffering a major stroke following a double lung transplant.
In loving memory of a few of the brave CF Warriors who fought the good fight and recently finished the race:
Cystic Fibrosis warrior, Gunnar Esiason, son of NFL quarterback Boomer Esiason, released a blog regarding this very issue! Please take a few minutes to check it out:
Friends, the bottom line is... WE NEED A CURE... we get so excited with medical advances, but it's not enough! My CF Mom friends that are walking the same road I will walk, are now burying their children!! These moms that I have come to know and love are left with a hole in their hearts that will never be filled. I was once told that when you lose a spouse, you are a widow. When you lose your parents, you are an orphan. However, there are no name for a parent that has lost their child, because the grief is to difficult. There isn't a word in the English language to express the pain.
Through all of the pain and my tears as I type this, one things remains true for me. It's the only thing that gives me comfort in the midst of the storm we live in. God is good!! Yes you read that correctly!! God is good!! I have said over and over, that I know He chose Matt and I to be Emma's parents. I am so thankful that He trusts us with her. I am forever thankful for His provision, faithfulness, peace and comfort. I am thankful for the support He has put around us and I am thankful that He loves Emma more than I could ever think or imagine. I am astounded that He can take such a horrible situation and use it for His glory!! God is good y'all!! He has the power to carry us through each day if we let Him!! Even when we are weak, He is strong. So let's live each day to the fullest... for we are not promised tomorrow!!
"Death is inevitable. Living a life we can be proud of is something we can control." CF Warrior and founder of the Claire's Place Foundation, Claire Wineland. Claire passed away Sunday after suffering a major stroke following a double lung transplant.
In loving memory of a few of the brave CF Warriors who fought the good fight and recently finished the race:
