This CF battle doesnt need to be negative. Only positive

I just told my husband that I have something on my mind.  Someone today said that CF is inevitably going to take your life if you have it.  Death rate is 100 percent.  Don't do that.  Don't say that.  Don't be negative.  Yes, I get it.  CF is brutal. CF is a beast. It is a nightmare.  Its that fight you want to win all the time.  Yes it is hard.  Yes it is what we all want cured but think about the little kids who look up to you.  Who think you are great... I have an issue with that.  That is my cross to bare but I don't like that you said that. 
The CF world is so hard.  The loss is great but my life is greater.  I am a mother to two of the most amazing little girls in the world who see life as a joy, who see their mom smile everyday or scream depending on my mood just because they are acting crazy.  They see good.  Don't ruin something for them.  Be positive.  I know a lot of people are very negative on this disease b/c it doesn't always have a great outcome.  My world is my two girls.  Two CF children. Two different battles even though they have the same disease.  They are so different.  One is doing fabulous, on the road to being a cheerleader in middle school, getting backhand springs at gymnastics, and smiling everyday and acting crazy just like her daddy.  My youngest has a bigger battle. Not only does she battle CF, but asthma, type 1 diabetes, center pain, neuropathy pain, etc. and she is loving life even though everyday something knocks her down.  She is my strong willed child.  She will fight me to the depth of everything.  She is fighting so much, she gets mad, she screams, she says I cant do it which drives me crazy b/c in our house, there is no I can't.  Only I cans.  She is her daddy and his attitude side.  Poor greg is taking the blame but I will take the blame on pyper and her attitude b/c it is me, and trinity is me in my nurturing side.  She loves big and has a huge heart. Get mad at me and I will tell you I don't care because saying stuff like that only makes it hard on the younger generation.   Be positive.  My kids know what CF can do.  I don't sugar coat anything,  They know the life it can deal you.  The only thing I can do is raise them to do all their treatments, and take all their medicines and try to do their best.   Remember be positive even though you want to be negative but remember you have little eyes, and ears who think you are amazing and the journey you go on with CF... Love, Smile, and send positive vibes to those who are still in this battle.  Who fight everyday.  Who want to live. 

As I said, Trinity is doing pretty good.  Running a 8 minute mile with her daddy at the gym and doing gymnastics and cheer.  Pyper has a different battle but we are working on making her life great like her sisters.  Trinity is getting ready to start the new medicine Orkambi and I hope this medicine makes her life so much better.  Love hard, Smile a lot, and make memories that last a life time.  God gives you one life. Make memories with the ones who care.  The ones who love you through every step of your battle.  I am a home body, I love my girls and hubby with every ounce of my being.  I only want to be with them and sometimes my family gets mad at me and that is ok.  I get it but my heart is them.  My life is them.  My world revolves around my girls and hubby.  My only smile, my only heart, my only life I get is this one and I want it to be surrounded by my life and I do that everyday. 
This CF battle I do two times everyday.  I take it to heart.  I want give up b/c my cargo I worry about is my life.  my two girls who mean everything to me.  They are my reason I breathe.  Stay positive on this journey called life... Pray often, smile a lot and make memories that last a life time.  I have one life and I am going to make god proud of me. He may say momma you need to live a little and step back from your kids but I can't do that.  My one job that I take to heart is being a mom and wife.  I love hard, I cry hard and I fight hard. 
Don't give up hope. 
All my love,
Mom of two of the most amazing cfers on the planet. 
Martie

a change is coming!!!!!

In less than a month we will go through another change in our lives.  My Pyper will be getting her feeding tube placed.  Trinity's tube was a breeze but I feel Pyper's is going to be more of a challenge.  That challenge being Type 1 Diabetes.  I can handle the feeding tube.  Trinity's feeding tube has been one of our biggest blessings.  She is gaining weight, she is healthy and she is thriving.  I love it.  I pray that we get the same effects with Pypers. 

I would be crazy if I didn't say I was nervous.  I hate to see my kids in pain.  I hate to see them hurt.  If I could change places with her, I would in a minute.  I would give my life to protect them, cure them, make them better.  I would sacrifice my life for them. I would and I have and I will continue until they are cured or until I feel I can cut the rope.  I doubt that will ever happen.  Good luck to the men that think they will walk into their lives and sweep them off their feet.  He better get to sweeping b/c I am a big girl and it is going to take a lot to win this momma over. 

The girls are homebound right now through flu season.  We are still debating on homeschooling again next year b/c it is easier.  It is routine.  They had more freedom even though they miss their friends.  I will have to figure out a way to keep them with friends if we decide to do that again.  I like structure, I like routine, I like order. 

My heart will always be my girls.  They drive me nut crazy everyday but I can't stand to be away from them. I hate to even go to the grocery store.  I hurry through and get back home.  Greg is always like honey go tan, go to the gym. Nope, not me.  I am fine.  I will stay at home.  That is just what a mom does.  They love with every ounce of their being, they sacrifice their own lives for their kids, and they do it with grace...

Right now, pyper is eating, trinity is on her phone b/c she is a teenager and that is what they do, and greg is sleeping.  We are all in the same room together. We are always together.  I love that about us.  I love that we are always together.  I love being a family, a mom, and having my blessings right in front of me everyday.  Thank you god for all of my blessings.  Big and small. 

Keep us in your prayers come March 19th, b/c we will be admitted for Pyper's tube placement.  Pray for comfort, pray for easy placement, pray that her sugars are easy to manage and that she starts to gain, and pray for the doctors and nurses that will be beside her during her surgery.  Pray for god to guide Dr. Bambini's hands and get my baby back to me quick and doing great. 

My Heart and My Life are Greg, Trinity and Pyper and even my 4 pound yorkie dog...

All my love
Martie
Mother of two amazing fighters and wife to an amazing man. 
Blessed#Loved#amazedthatgodhasfaithinme.....