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Will CF Kill Me?

photo-1

Love this photo of the red cheeks after playing outside with her siblings at piano lessons the other day.  Precious memories!  

Nothing like a question that grabs your full and unobstructed attention!  The other night we were just getting ready to start Rachel’s treatment and she came over to me with a sweet, but serious look in her eyes and asked me point blank, “Will CF kill me?”  OUCH!!  While I tried to respond in a calmness that far exceeded the emotional bomb that she had unleashed, I let her know that God knows just how many days each one of us will be on this earth!  I also let her know that the reason that we work so hard at eating, medicines, fundraising, and treatments is to work to allow her to have the best chance at a healthy, long life.  I sadly, also explained the reality that CF does kill many people.  She stood searching my eyes for a moment and then she skipped happily away to start her treatment with dad.  But…that little question has continued to cause me to ponder many things.

I continue to reflect on how CF truly does cause us to fall on our knees and cry for mercy, many times daily!  We know that despite working really hard for her health, there is nothing we can do to change the tide before her.  I think having that reality of life and death before you on a daily basis is huge.  Recently on one of the adult “cyber conversations”  that I follow there was much discussion about how polarized the CF community is.  Either people totally hold on to the Lord and their faith through the trials of CF, or they run the complete opposite way towards being agnostic or to science being the answer.  In the dialog, it was interesting to see the many people and families that have increased their faith due to this disease, but unfortunately, there are still many that are hard hearted and have turned away.  I seriously do not know how anyone that battles this disease, or any disease for that matter can not hold to the hand of Jesus.  IT IS JUST TOO HARD!  Even knowing that the Savior has a plan…it is still tough!   When you have to talk about death and dying with your sweet, seven-year-old daughter knowing with out a cure that you will most likely outlive her is TOUGH!!!  I am eternally thankful for science and technology, because with out it we would not have the health that we do.  However, I also know that it is God’s grace alone that gets us through each day and every trial.

Another thought that I pondered this week, how many times has Rachel thought and wondered about death and things related to CF/illness?  One of the hard things about her growing up is her understanding the gravity of this disease.  At seven, I am pretty sure that I didn’t too often wonder if I would die from an illness.  =( What an enormous burden to carry!!  We talk a lot  about her doing what she must to remain healthy.  (Currently that is E.A.T.I.N.G!)  And truly, we try to keep it all positive.  We talk about the future, we talk about hopes and dreams.  She tells us that she wants to have 8 kids…and we don’t say a word about the difficulty of her bearing more than one, and the near impossibility of a person with CF being able to accomplish health AND bear 8 children.  When she dreams of being a firefighter, we let her dream… all the while knowing that she would not likely be able to meet the requirements or endure the smoke issue.  When she talks about going to the moon…we dream with her!!  Yet, she is starting to understand there are limits. =( And this saddens me.  I think that all of us want the sky to be the limit for each one of our child’s future!  Her starting to figure out there may be limits is one of the reasons why this conversation was particularly tough to have with her.  She sees the day to day differences of treatments and med’s, but knowing that she wonders about death…well that takes an amazing amount of grace and strength to grasp.

**Update**We are still in the throws of eating battles.  Rachel is still going down (last check 6.5 but haven’t weighed in several days…mostly because I don’t want to know)!!  We are working hard not to fight her. Bleck!!  One of the hardest things ever.  Offering the food, and trying to leave it at that…is against every part of my competitive, driven personality.  I am also sad that it has somewhat affected the other children.  This week little Shiloh has been praying, “Dear God, please help my sister to eat, so she doesn’t die!”. WHAT??  Where did that come from and how did she put those two together?  UGGGGG!  That is almost as bad as Rachel’s question about dying.  =( Reflecting, I know that some of that comes from people that we have prayed for and been in close contact over the past year that have stopped eating, (usually because of a disease/illness/cancer) and died.  So I am guessing that is where she is getting that angle from, but wow!  All this really makes me wish life wasn’t so hard, but even more so…MAKES ME PRAY!!

Well, finally I have to share about the blessing of being in the CF community.  As I have reached out to several older people with CF that I know, they have continued to be amazing.  They are really a great community of people!  They help us mama’s of youngsters to traverse this path better and encourage us.  They help us to understand someone that is part of us,  yet outside of anything we will ever know or understand.  And, as I have spoken with several of these young adult people with CF, they have assured me that Rachel’s thoughts and emotions seem to be common.  Most of them remember having this kind of conversation with their parents at some point.  Not fun, but part of life.  I guess I am glad that she feels comfortable enough to dialog with us concerning these heavy issues, albeit one of the more difficult tasks of being a parent of a child with CF!  =)

On a happy note, it did kind of make me laugh when Rachel was taking her pills before going to bed the night she voiced her question about death,  later she asked me if she would still have to take enzymes and medicine when she was 90!  Yeah for forward thinking!

I smiled,

         and said,

                        WHY…YES!  =)

Since we celebrated Easter yesterday.  This post has all the more meaning because HE LIVES...I CAN FACE TOMORROW.  BECAUSE HE LIVES ALL FEAR IS GONE!

Hope you all had a Happy Easter! We did although it was chilly! 

We had  delightful time celebrating Easter yesterday,
& the meaning of THAT day makes this post has all the more precious!

Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

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2 Responses

  1. I really relate to this post. Bethany has never asked me about dying, yet. She is rather immature so I don’t think she has put everything together at this point. But, I have thought about it a lot lately — probably from reading blogs about kids with CF that are VERY sick. My husband tells me not to read them, but I just keep on. You write some thought provoking posts and I thoroughly enjoy your blog.

  2. You would be surprised how much kids understand. I knew about CF and death for as long as I remember as a kid. Thankfully, kids don’t have the same relationship with death as adults do, partly due to their inability to really foresee how serious it is. They know that it means “no longer there” but as kids, they don’t really understand what it entails until it’s really there. No worries.

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