• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

  • Recent Posts

  • Monthly Archives

Sad Dilemma~

Tonight I am a bit heavy hearted.  It seems that life has been so busy and while I have had much to write about, I have had very little time to actually sit down and work through words in print this summer.  However, tonight is one of those times when I feel the need to turn to my blog to process and work through heavy-heart emotions. =(

photo 3

Learning to cast off. Building upper body strength is a HUGE plus.

For several “years” now my girls have expressed an interest in doing gymnastics or dance.  I have looked pretty diligently over the last two years, but nothing seemed to fit our time schedule or was remotely affordable.  I committed in May to finding them SOMETHING this year, and praise the Lord, I did find something!  It was about perfect.  It was close to our house (10 minutes), affordable, worked with the girls (and Caleb) to be able to all do it at the same time, and we had some of our favorite friends that joined along with us!!  It could not have been more perfect.  They have participated for the last 6 weeks and have LOVED every minute of it!  They have also improved TONS (going 2 times a week has done great to build muscles and skill).  Tonight my mother in law graciously agree to take the girls as it was another crazy day around here (with the baby and school).  About halfway through the class my mother in law text me that there was another mama there with CF!  I don’t know yet if they were new, or have just not been there in the last 6 weeks.  Regardless…I kinda flipped out!  People with Cystic Fibrosis are not to be near others.  As you have probably heard from me before they pass germs and bacteria to one another.  The Cystic Fibrosis Foundation has gone as far as to recommend that, and I quote,  “Only 1 person with CF may attend a CF Foundation–sponsored indoor event.” Sometimes that indoor event is an auditorium! SOOOO…clearly this smaller area that the kids do gymnastics in is a dangerous place for Rachel to be around another person with CF!

This brings me to a HUGE dilemma! I clearly can not put Rachel in that environment again with another person having CF, but now what?  My heart feels sad, frustrated and a bit beat down tonight!   It feels like Rachel and really all of the other kids are negatively affected because of CF more times that I care to account!  As much as we try to take CF in stride, it greatly affects EVERY part of our family and lives.  There is no way around it.  Daily, and many times throughout the day CF smacks reality.  Sometimes mildly with treatments, pushing food, and pills and others like tonight quite pronounced.  Not many other than those closest to me know and see our struggles,  it’s humbling to allow others into the inner recesses of our lives and hearts.  The unseen idiosyncrasies of managing a disease with this magnitude while desperately trying to appear normal is such a balancing act.   The hidden struggles are heavy!!  It may not be another person with CF, but the struggles are ever present.  A best friend with a cold,  a crowded new area, or a pond/pool full of bacteria or concern over the intense heat or…the persistent reminder that life is just not normal for your family!  =( It is often tough.

One thing that I know for sure, is that God is ALWAYS good.  He has a plan and a purpose and this matter did not take Him by surprise.  Now with His help…we will try to figure out a way around this situation.  I am praying for wisdom and I know that God is faithful and that HE WILL GIVE IT TO US!  Just know that I am going to have 3 VERY sad kiddos when I figure out how to tell them that we are not going back to that gymnastics.  I don’t want to say anything about CF…so as I fight the tears tonight at another “no” as a result of this cruel disease, I will pray for the graciousness of Jesus in giving me the words to communicate life-giving truth to my kiddos.  I will also attempt to point them towards the fact that God works for His glory and their good!  ALL THE TIME!!photo 1 photo 2

Advertisements

3 Responses

  1. Hey lady – I would investigate and see if there is anyway the class time can be altered between the 2 CFers. Explain your case and see if they can help accommodate everyone involved. I know at the Great Strides walk there are MANY CFers in one place…we participate in the Atlanta walk so there are several hanging out all over the place. I know the walk takes place outside, but everyone still walks the same course and hangs out in the same grassy area afterwards. Many of the CFers wear a certain bright Tshirt so they can spot each other easily and keep their distance. Possibly an option is to keep them at opposite ends of the gym? Just throwing out suggestions. What a bummer! I hope it works out and you guys find a solution that involves Rachel getting to continue gymnastics. Blessings to all.

    Jenny

  2. Praying for God’s wisdom to guide you in this situation. Praying for strength. Misty.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: