Friday, August 6, 2010

A Word So Strong...HATE, but I Feel It I allowed to vent a little?? Of course I am, this in my blog.

Here I go.

I HATE this disease. I HATE it with such a passion. I HATE the fact that I see loved ones dying from it, my children suffering from it. I HATE it.
Why my kids. What are the chances that Brandon and I would meet and us both be CF carriers and no one else in our family have it or even know what it even is. I HATE it.
"Why us?" I ask a lot of the time. Why is it that we were chosen to have not one but 2 with this disease? I have to always remind myself that God knows we can handle it, and we have, but why?


Why this disease whatsoever? What is the point of it? Why put so many innocent children's lives ( and I know adults too) at risk. All I see is children dying. I am pissed. I am hurt, I am mad for all the families that have lost their loved ones.

My kids are ok and I thank God everyday that they are. Maybe an extra antibiotic or two and extra treatments, but why mine Lord?

I HATE this disease.

Dear God,
I thank you for trusting Brandon and I with these 2 children of yours and trusting us enough that we will take care of them. I thank you Lord that you have kept them out of the hospital thus far this year, but it hurts to see other people go through loss. Please. DEAR GOD, just protect my children and keep them healthy. We trust you and have faith in you. Please be with all the ones I know and don't know and offer them comfort in any type of loss or trouble they may be going through. I know you are poweful. Just give the researches/doctors the knowhow Lord and bless us all with a cure. Not just some with a rare gene or certain type of gene, but everyone completely. Please Lord God Almighty, just protect my/YOUR children.
In Jesus' name, Amen.

My love goes out to all those who are fighting. Young and old. May you know that the Lord is watching over you and will protect you and give you peace.

Still, in the end in my heart, I HATE this disease.

My Dream for CF: Reps. Stearns & Markey

Thursday, August 5, 2010

Easy...No, really?

So it's almost 10:30 here and I am still up when usually in bed. I need to put some things in writing.
This is such a great way to "out" some things I have been thinking/feeling.

Serenity started with a cough yesterday and this morning woke up with her voice hoarse. I have never heard her voice like this. Hunter, yes. Serenity, no. Wasn't sure what was going on. As I have posted in the past, things that go on with kids with CF, or any other condition, is always a "guessing game". So, I called her Dr. and was so surprised to actually get ahold of her nurse and not her voicemail this time. Explained to her what was going on and she was not too worried about the hoarseness as it was just a sign of her vocal chords being inflammed. As far as the coughing, she wants to give it one more day before putting her on antibiotics. Bumped her up to 3 treatments a day, so I figured, eh, I'll do Hunter too. Going good.
Then I posted on Facebook, my second resource for info with all the great CF friends I have, wanting to get advice from them. One told me it could be allergies or stress. So I decided to give her a dose of Zyrtec and it has actually help.
Something that easy? No way!!! Nothing has EVER been that easy. It seemed to help and I guess the true tell all will be tomorrow morning when she wakes up.
I have always been used to the hundreds of calls to her Dr. "This isn't working", or "This just doesn't seem right", but it seems like it worked. Thank you Lord and thank you to all my friends who offered the great advice.
If it does seem to continue, tomorrow I will get her on an antibiotic just as precaution.

I love my CF Family, and my friends (Emily), and thank you all for being there for me when I've needed you the most.

Promise To My Kids

My promise to my kids

I've loved you since before you were born
I've loved you through all the trials and tribulations we have gone through together
Surgeries, needles, hospitals, Dr's beyond Dr's, the numerous medications

I never knew what true love and dedication was until I became a mom
A mom to not only one child with a special need, but two
A mom has duties and responsibilites to uphold and to give you all that you need to get through each day
Some moms have a little more to do

My promise to you:
I promise to always show you love
I promise to always give you an extra hug and kiss throughout the day
I promise to protect you with all my being
I promise to be there for you when you need me
I promise to discipline, to teach you right from wrong
I promise to always show you love
I promise to teach you about Faith, and the Lord
I promise to fight the fight with you
I promise to give you the best life I possibly can
I promise to show you love

I promise to be the best mom I can be

To my kids that know I love them but will they ever know how deep that love really goes. You are my life and my everything. Love my babies!!!

Monday, August 2, 2010

Small World--Looks CAN Be Deceiving

Thursday night hockey last week went ok. Despite the fact Hunter got sick, we really got to know his coach. His coach wanted to know a little bit more about the kids. We told him that both of them have CF. He looks at us like "What's that?". I thought, let me tell you. Started to explain to him what CF does, that no one on either side of Brandons nor my side of the family has ever had this disease. Went into depth about medications, hospital stays, etc.
He looks me in the eyes and tells me that by looking at them, you can't tell. They are running and playing around as we are talking. I look over at my kids and I tell him, you can't tell but it is very indeed there.
I work my butt off to keep these kids healthy and to keep them in shape. Went into telling him our daily routines, the time consuming treatments to keep the mucous that they have a hard time getting up, from sticking to their lungs. It was a great opportunity to inform and get another person to become aware of this disease.
Come to find out, their coach who is only 25, has Crohn's Disease and Rheumotoid Arthritis. He went into how he was diagnosed at 18 years old and has to take medications himself to help him with his digestion. Different diseases, but a lot in common. He went on to tell us how he takes 9-10 meds a day for his conditions.
He understands in a way. No one can completely understand CF though unless they are going through it themself or taking care of someone with it.
He almost wanted to go easier on them because of him knowing now. I told him "No". They need to be worked, they need the discipline with hockey and listening to him. Don't go easy on them just because they have CF. They are like any other child and I don't want them to be treated any differently. Maybe more water breaks but they need the excercise to keep their lungs working strong.
My kiddos may have CF...but you know what? They are as human as any other person without it. Never, ever, judge someone by their looks. You never know what THEIR story is.