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Emotional Morning

Love it the girls play "Doctor" sometimes. SOOOO CUTE!!

Sweet Smiles "pretending to doctor her dolls"! She has had a little practice=).

You may remember that a few months ago I was asked to be part of our CF clinics team to help in developing a better plan of action for the pediatrics and the adults team.  I was very honored and despite my crazy season in life, I agreed to do it.  I thought it would be  a lot of fun, and interesting to challenge myself in a different realm of CF than I have been exposed to previously.  While all that has been true, and I have enjoyed meeting some amazing people that have a real passion for CF and making a difference in our lives…it has been really hard.  Each meeting I have come away a little more and more depressed and down heartened.  Today, however was a TOTAL breakdown when I got home. =(

The team is great in trying to figure out ways to help the patients have a healthier, better life, but  the difficult part is the reality check that comes for me.  CF STINKS!!!  Today was much of the same.  They are able to talk clinically about it all, and I am glad that they do and can, but hearing the steps for day one in the hospital till day 21 and knowing that is just something that CF people do and HAVE TO GET USED to is CRUSHING!!   =( They also began to talk about how hard it was to get patients to agree to be hospitalized.  They of course see it from a clearly clinical perspective and I as a mother, FEEL the pain that comes with those hard decisions.  Rearranging your whole life, family, and yet not having a choice- this is what is needed to stay healthy (or as healthy as a CF person can be, and only for a little while, knowing that this is not a one time thing, but rather a yucky normal).  I WANTED TO SCREAM!!!  THIS IS MY CHILD!!!  THIS IS A DISEASE THAT SHE FIGHTS DAILY!!!  It makes me angry at CF.  It is hard day to day, but then to know that this is the easiest part of it, and that this is the best that her lungs will ever be, is tough!   Knowing it only gets harder from here is* emotionally* draining!!!

We’ve had a discussions about PFT’s (pulmonary function test)  and what the average was for our clinic.  Rachel hangs out on the very bottom of normal.  Her CF is considered moderate to severe.  While I know that they must delineate and categorize this disease for a more accurate treatment, it is so hard to hear those things and to know that “those patients” that they are talking about are the same face that I love to see, hold, love on and cherish…EVERY DAY AND FOR ALL THE DAYS OF MY LIFE!  These meeting bring the reality that unless things change drastically I will most likely outlive my child!  I HATE THAT THOUGHT!!!  WE have briefly discussed the downward slide of “baseline”.=(  One of the team members were talking about how psychological the PFT’s are for patients and I chimed in and said and parents too.  They all kind of chuckled, but I was thinking, “THOSE NUMBERS TELL YOU HOW MY CHILD IS DOING!”.  I was thinking today, those numbers give evidence to how long my child will live!  (While that is not totally true, it feels like it sometimes. One reason that I am going to keep making Rachel R.U.N!!  We will make the most of what she has.)   Someone mentioned a story about a young girl that had difficulties from early on, but now has had a lung transplant.  I just cringed.  I so know that this is the way this disease goes, but the heartache and fear that comes with this journey is more than I think we can handle at times.

The team was also trying to make up plans for the lab’s X-rays and all the JUNK that CF people have to do go more smooth.  It broke my heart to know that this is MY CHILD!   I am the one that tries to relieve her fears of “what is going to be done at each appointment”.  I am the one that holds her tight and wipes her tears as she battles the tough “normal” stuff of this disease.  It is bringing tears to my eyes even as I write.  I hate CF!  And today, I have just not been able to keep my emotions in check.  The fears are always under the surface, and really there aren’t many days that I allow myself to “feel” the emotion of CF.  But sometimes it just feels like we are trying to stop a freight train and that is difficult.  These meetings seem to bring up the fears/reality of the future.

Everything that we talked about today was the “ick” of CF.   We discussed the top 10 most difficult things to deal with for the CFers.  10 things!!!  They kinda joke a bit with only 10 (meaning there are just so many things that are difficult for CFers).  My heart of course heard the stuff that we currently deal with and then so much more that we get to look forward to dealing with!   I want there to be something good.  And yet, the reality of it for me is that there is little on the clinical side–that is good.  The nuts and bolts of this disease is that it is hard, it is a matter of doing the best you can for as long as you can.  Despite your best efforts…it still is hunting you down and trying to destroy you.  While I know this is the truth of the disease, I need to know that there is hope.  I need to experience the joy.  I need to know that God is in control despite the hardships of this disease. I need to see Rachel’s smile and know that regardless of the sheer CRUD that comes from this disease she is still an amazing little person!  I see a future for her.  I see her sweet smiles and hear those giggles.  I see that she has a sensitive, kind spirit.  I see her helpfulness to anyone that needs help and especially if they are smaller than her.  I see she is a fighter.  I SEE HER…not her disease!!  I like it better that way!!

I walked away today thinking I am never going back to that.  The people are great.  They are dedicated and they are truly an amazing team, but I don’t think this is for me.  I have enjoyed meeting the adult team, but really I HOPE CF IS A DIFFERENT DISEASE BY THE TIME WE GET THERE.  I hope that I never have to talk about Rachel coughing up blood and have to described the amounts to know how serious it is for her.  I think I am too close to this disease to be able to deal with the realities of it (if that makes any sense).  So, while I was honored to be asked, I think it is just too hard emotionally for me, and I need to do what I can to focus on the hope that God alone gives.  Rachel is defined by so much more than the frequency of her cough or the color of her sputum.  Driving home today I realized that I love helping make a difference with CF, but God knows it will probably have to be in another way.  My mind quickly went to Rachel’s Raise of Hope!!  I love this name (our fundraising name for Rachel’s team).  Rachel (my sweet, precious CF warrior) Raise (hoping to raise money to fight this disease as well as the play on words “rays” pointing to Jesus that helps us to endure the hardships and praise Him through it all) and Hope (focusing on the hope that Jesus brings for the future rather than the reality of what life is like now).  This is truly a desire of my heart.  (Next year’s fundraiser…it is in the works, please pray for a clear direction specifically on location and bringing people to walk alongside us).  God knows that I will work hard with all the strength that He has given me, so maybe…just maybe Cf will look different for her future.

Love this toothy grin!

Delighted!

Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart….

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2 Responses

  1. I think you made the perfect decision!!! Just stick to the reality of the way life is right now and we will visualize the reality of our children having children and helping us walk us across the street in our old age 🙂

  2. Sorry I’m just now getting to this post. I finally sat down to read my 200+ posts on my Google Reader. But I’m glad to have read your post. I wholeheartedly know what you are saying in this post and feel your pain. Hang in there. I have moments of panic like I hear through your words. But as long as they are just moments, I can function. Rachel is more than her numbers. And “trusting God” is more than just a phrase. Thinking of you!

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