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Breath of Hope 2015

Hair done.  This seems like the perfect shirt for the day/evening ahead.  JUST BREATHE!!!

Hair done. This seems like the perfect shirt for the day/evening ahead. JUST BREATHE!!!

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Dressed and ready to go!!


 

Breath of Hope Gala was a humbling, amazing, and hopeful evening!!  We were so blessed to be a part of it.  Several months ago we were told by the Cystic Fibrosis Foundation that they would like to honor us as caregivers of the year.  This honor came with the opportunity for a speech.  Now let me in on a secret.  I LOVE to write.  It is one of my favorite, relaxing, and carthartic things I do.  I have a big mouth, and love talking too…well to FIVE or less people!! =)  Sadly, I often sometimes can get a bit flustered with five people.  So the thought of talking in front of 300 people literally made me nauseous.  I could not sleep for the first couple of nights thinking about what I could possibly share.  However, whenever I am asked to speak or do something that is out of my comfort zone, I am reminded each and every time of the words God said to Moses.  Who gave you your mouth? Ex. 4:11 is a reminder every time.

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Then the LORD asked Moses, “Who makes a person’s mouth? Who decides whether people speak or do not speak, hear or do not hear, see or do not see? Is it not I, the LORD?

So, we have been pondering, thinking and trying to write a speech for several months now.  It is one of those things that has weighed heavy on my heart and mind. The process of trying to put our experience with cystic fibrosis in a box and tie a nice bow around it… seemed nearly impossible.  Lots and lots of prayer went into our few moments on stage.

The multifaceted aspect of this speech was so different than anything I had ever done before.  The gala would contain doctors, and other health care professionals, mom’s and dad’s of those with cf, one person with cf, people in the community with no connection to cf, and then people of great means willing to support our efforts to a cure for cf.  A varied audience for sure.  It was overwhelming to me to try to speak to all of those groups.  But God in His ever faithfulness, reminded me to tell Rachel’s story, and to let Him work out the details.  It really did lesson the pressure.  So many times I think that I am the one in control of and over a situation…and then He gently reminds me that I am JUST his child. =)12132385_10208055427247378_8568097761766684165_o

Paul and I finally pulled our speech together and were able to practice it several days before the event.  I felt like we had gone through it so many times that I would potentially be inauthentic or make it seem like fighting this disease is trivial.  I was working hard to make sure that it was something that I could easily talk through with out totally loosing my composure (because there is nothing like loosing it in front of LOTS of people, a tear or two is acceptable, but sometimes if I allow myself to think about my girl and her fight with cf it is not just a tear but the heaving, heart wrenching, painful cries of a mama that wants so much more for her girl and can not make it happen).

GOD WAS AWESOME!!!

I was literally shaking from about the time we walked in the door of the event.  I did not eat a thing during the dinner portion.  I couldn’t.  I knew God was with me, and that my amazing husband would be beside me…but I was still SCARED to pieces.

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Rachel’s painting made me smile (and tugged at my heart a bit). I had to take a picture. That painting….that was MY GIRLS!! The one we are fighting to save. Loved seeing her picture there at the event.

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This was the other painting Rachel did. These bring joy to my mama’s heart. Rachel was more than thrilled to be asked to donate an art project. Working to find a cure for “her” cf!!

 

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Fun group of people. The woman on the left was a fellow cf mom that I had the joy of meeting that night. The man to her right was the first cf doctor we met when Rachel was 10 days old, Dr. Sammut. He shared impactful insight on that first day, (he is the one who said we would know our child better than anyone else…including doctors). The beautiful woman in the red was Margaret. Incredible, infectious personality. The inspirational Barry Zoob  is the man beside her. He has fought the fight of cf for decades and encouraged us in amazing ways. He has a heart for this disease and has raised copious amounts of money to combat cf.

Before the program started I had the joy of meeting some pretty amazing mama’s of cf kiddos young and old.   A true treasure to relate with those mama’s.  We fight a war few understand and speak our language most are not able to comprehend.  It comes with our daily battle that we willing to engage in for our kids’ lives.  I spoke with the main speaker, Margarette, for some time and she encouraged me with her incredible spirit of courage and tenacity.  WHAT AN INSPIRATIONAL WOMAN!!!  Instant bond with this woman. As I shared our story of Rachel’s rough start and the up’s and down’s of life.  She shared her story of her two beautiful children with cf.  She understood the cruelty of this disease in a personal way.  Heartbreakingly, her daughter went on to heaven at the age of 13!  The evening became so much more real.  This moment. This disease. This fight. HAS TO BE WON!!  My heart broke for her and for each of us that stare down the reality of what this disease can do.

I spoke with another mother and we lamented about the difficulties of fitting it all in.  We also spoke of the effects of cf on the entire family, especially other children.  It was so encouraging to my heart to speak to people that understood in an intimate way the fears, trials, and challenges that we face.  The tears are quick to the surface with people who understand.

The thing that is so difficult when I talk and communicate with other mama’s of kiddos with cf is the underlying reality that life is HARD.  It might be less hard at a point, but you know it’s around the corner at some point for all of us. One mama talked about how you sometimes don’t want to get to know other mama’s because then you engage in not only your own hard, but now their kiddos too, and it hurts our mama’s heart to watch the kiddos struggle. It might not be our kids this time, but it could be.  This pain still hurts the heart.

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Well, we got up and accepted the honor, and gave our speech.  I felt the Lord’s presence.  Through my intense nervousness.  This was a great reminder that while I knew the Lord was right there with me, it didn’t take away my fear or trembling body.  He just helped me to walk through it.  It reminds me of that quote, “Lord do not take me out of the hard, teach me to rejoice, and walk through it with you!”

We survived the speech.

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My oldest boy, Nathan. He was excited to attend this event with us. He has been a great advocate in fighting for his baby sister.

Screen Shot 2015-10-22 at 9.59.26 AMI pray that the Lord was honored in our obedience in engaging in something that was far out of our comfort zone.  I pray that people understood that Jesus is faithful, gracious and ALWAYS good.  And, that with continued support, cf is a disease that is close to having medication that will impact the future!   We continue to praise God for the hard days as well as the good.  That dependance is a blessing!

 

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