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Praying for Change~

Fundraising has gone really well this year!!  Above and beyond what I could have asked or imagined.  A true testament to the power of the Lord and His people that are generous in caring for the sick!  We have felt so much love and care over the last few weeks and months.

Each year I have made a video of Rachel’s life and fight against CF.  It is very encouraging to me and brings me great joy to see that she is growing and thriving despite the difficult challenges of CF.  IT is also, for me,  a mark that despite the struggles there is a plan for her life.  I am praying that I get to mark this life for the next 50 years…but just in case, I want to have plenty of video and pictures of all of my kiddos to last MY lifetime!  See the thing is, I realize that any of my sweet children could be taken from me at any point.  They are the Lord’s and He is in control of their days!  I know this!  However, having one with CF the likelihood of her life being cut short is greatly increased.  This disease could take her life…it most likely will take her life.  That’s a hard reality to swallow.  So while I push it FAR, FAR from my mind, making a video is my way of capturing her sweetness in spite of CF.  I use it to educate others, but also to somehow “hold” on to my sweet girl.  A mark in time, something tangible that shines of her strength.  However, I think it also brings the reality of cf that much closer to her as well.  While we don’t talk much about sickness, health and death…I know in her little eight year old mind, she is constantly trying to process it all.

This morning Rachel and I were talking about the fundraising as we were flipping pancakes. =) We talked about how exciting it was to have reached our goal.  We talked about having to change our goal because SO MANY people love and care for her, and have given to her life to try to make things different.  She literally cheers and does a fist pump with each and every check and note that comes in the mail and each shirt that has been purchased.  It’s fun to see her joy.  Then I asked, “Isn’t it exciting that the money will help the doctors to find new medicines to help CF?”  AND, then out of nowhere she just broke down on me crying. =( She told me she doesn’t want to have cf anymore!   Ugg, I was not ready for that.  The conversation was lighthearted and then…reality.  It BROKE MY MAMA’S heart!  Rachel is about the strongest person that I know.  CF truly does not get her down.  She just does what she must daily (albeit slow and with MANY reminders because life is just so much fun she doesn’t want to stop to attend to cf needs).  She HARDLY ever complains.  I am sure I complain way more than she does and I don’t have to do it everyday.  However, this morning I could see the struggle in her eyes.  As I hugged her my heart felt the struggle.  My eyes could not hold back the tears as she cried.  My baby fights with every thing she has each day, but the burden is heavy.  Each year it seems to get harder and harder as she understands the fight that she is up against and how much different her life is from everyone else. =(  It caused me to pray…pray for understanding, pray for relief, pray for a cure.  I know that God doesn’t promise us ease of life.  It is through great struggle that great character is developed.  I know these things…but to stand before your child, heartbroken over something that neither you nor she has any control over…is still tough!

I guess it is also that realization that I, at times, go through the mourning process…so must she!  I hate that.  I desperately wish that I could take this burden from her.  But, no matter what I do, I CAN NOT take the pain, the worry or the uncertainty away!  I can however, walk alongside her on this journey, and WILL for every day that God gives me breath!  But I can’t make it any easier for her.  That, in and of itself, brings a lump to my throat and a deep hurt in my heart.

So today…I will keep doing the only things I know to help her. GetAttachment.aspx

I will
love her,
play with her,
pray for her
teach her a dependence on the Lord,
encourage her
&
fight for her life!!  

 

It is what I must do as her mother!  So while I hate asking people to engage in our fight…I will!  I must!  As I sit her now listening to her little cough, I pray.  I pray for strength to do what we must.  I pray for the struggle before her.  I want to see the future of cf changed for my baby!

Praying always~  

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One Response

  1. Makes me feel sad to hear that Rachel cried. I think my Bethany is just very immature as she doesn’t seem to really give any thought to CF, except she doesn’t like her treatments. I guess her day will come. I’m interested in the video you make each year. Is it just pictures put together or is it just video clips put together from different events of the year? I would like to do one for Bethany and maybe my other kids and the only thing I have ever done is put some pictures from the year to music — and this was the entire family, not one child. Just wondering how you do yours. It sounds like something that we would all cherish one day.

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