This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Saturday, December 11, 2010

My heart aches...

Why do bad things happen to good people??  Why do thoughts cloud my mind and try to drive me to insanity??  Why must there be so much pain??  Why can't we do more to protect our children??

My thoughts have been driving me crazy lately... just reflecting on so many things that have been happening.  It makes me think.  I think the thoughts I don't want to think.  I think the thoughts that scare me most.  I hate reality.  I hate feeling helpless.  Even more, I hate being helpless.

My heart aches because of these thoughts.  My heart bleeds for others who are suffering.

Why is the world so addicted to others' pain?

Why is the world so fascinated with death and the end of the world?

So much of our lives are really NOT our lives.  So much of our lives are outside of our control.  When you really think about it, there is so little we can control.  It's out of our hands.

I hate not being in control.  I'm a fighter.  My family is a family of fighters.  We will not give up.  We will not give in.

I am so discouraged and my heart is aching for those I know, even though I don't actually know them.  I see how they suffer.  I can feel their pain.  I can't imagine all they are going through, but I feel for them.  I cry for them.

I feel for the parents whose children have lost their battles.  I feel for the parents sitting beside their children as they battle for their lives.  I feel for the parents who are battle their own health wars, but still must put up the brave front to put their children's needs first.  Some of these parents will be reading this...  You know who you are.  You know what I'm talking about.

There are times when we need a timeout.  There are times when these demands take their toll on the parents.  It takes a toll on the kids too when Mommy and Daddy get stressed out.... We can't be the best parents we can be if we don't take care of ourselves too.....  Sometimes we lose track of the whole picture, the bigger picture.... but what is the bigger picture?

The panic attacks have been coming back again.  In full force.  It's hard to keep them down.  Maybe it's this time of year....  Maybe it's because I know of the stress that comes with this weather, and the stress that comes with the holidays, and the stress that comes with winter illnesses...  Maybe it's just all in my head and I'm finally losing my mind....

Some days I am just in awe while watching my kids.  To think, I gave them life.  I snuggle with them and hold them close.  I watch them sleep.  I watch my husband sleep.  I love them all so much, I don't know if they know how much.  When my Saxy is sleeping on my lap, I just snuggle him so close.  When Raine falls asleep against my side, I want to wrap my arms so tightly around her so tight and never let go.  They both are growing so fast.... too fast....

I don't know if my husband knows how grateful I am for him or how much I love him.  I try to tell him, but it's so hard to find the right words.  The past (almost) 7 years, he has been one of the best things in my life!!  There are many things, particularly in the past 3 years, that I don't think I would have made it through without him, without his support.  I know it's hard for him at times too, and he tries so hard not to show it.  And I know there will be many more difficult times in our future.  But with him, I can take on anything.

At least, I hope I can.

I'll admit it.  I am scared.

I read some of the case studies for the new medications.  I read about treatment plans for CFers with different gene mutations.  I read about g-tubes, picc lines, nebulizers, hospital stays, surgeries, lung transplants, colds that turn to pneumonia in the blink of an eye.  We have gone through some of these.  We know how fast things can start to go downhill.  We know how fast it can all snowball.  We know how fortunate we are to have Dr Ulrich's cell phone number for serious/emergency situations. But this doesn't decrease my fears.  Every cough, every cold, fills my heart with dread.

Too many children are losing their battle with CF.  The average lifespan is too damn low.  I'm not ready to lose my son.  I know that no one is ever ready, but I'll be damned if I'm not going to do everything in my power to fight this disease every step of the way.  If it comes down to me giving my son one of my own lungs, I wouldn't even hesitate.  It's sad that so many others won't give up their organs even in death.  Those lungs aren't going to do anyone any good buried and rotting in the ground!!

For now, I'm going to be thankful.  Or the best I can be.

I'm going to fight tooth and nail to keep my son alive and beat this disease. 

I'm going to appreciate every day that my children are in good health. 

I'm not going to take my children or my husband for granted.

I'm not going to give a damn what anyone else thinks - I'm going to do what's right for my kids and their health.  Don't be surprised if we don't stick around if someone is sick or has a cold, or reeks of cigarette smoke, or if the temperature is too hot.  I have to do what is right for my kids.  And I'm not going to bring them around others when they're sick.

Don't use guilt trips on me - I'm done with them and they're not going to work.

Don't play my children against me or try to turn them against me.  When the time comes, they will understand why we do what we do.

I'm trying my best.  That's the best I can do.

I've said it before.

I don't want your sympathy. 

I don't want your pity.

I want your understanding, support, and love.

And I don't think that's too much to ask for.

1 comment:

  1. I just came across your blog and have a 6 year old with CF. He currently has his 6th PICC line and just had his 7th sinus surgery. I feel better reading your blog because I've also been struggling as of late with all the demands of chronic disease in a child. I just feel drained and overwhelmed. I have never had anxiety before but think it is starting?!? I will continue to follow Saxon's fight and pray for all our brave warriors. Megan