I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Friday, April 10, 2015

The Blessings of an Anchor

 
My favorite scripture is Ether 12:4. I had a neat experience with it  a couple of years ago. I heard Frank read it aloud during family scripture study one night and it struck me that it was exactly my testimony. It reads:
“Wherefore, whoso believeth in God might with surety hope for a better world, yea, even a place at the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works, being led to glorify God.” - Ether 12:4
It explains faith in God in such a simple and perfect way. If you know there is a God because your heart and spirit remember and know Him, your Heavenly Father, then that sweet feeling and knowledge gives you HOPE! Your hope that naturally comes from your faith creates an anchor from your soul to God. That anchor holds you in place, guides your life, and keeps you working towards loving God back by doing good things.  
I think that many people that know us did not know about the Cystic Fibrosis in our family, or if they did really what it meant. That was perfectly fine with us, and really how we thought we wanted it. We never wanted anyone to stand out, or be felt sorry for, we still don’t want that. Everyone has challenges and trials in their life, we knew we were no exception.
But when I found out about Ruby I felt like I needed to write it down, how I was feeling, and our story. It was so cleansing for me. The process of putting things into words from our CF experiences over the past 8 years was a very sacred experience for me. I wasn’t sure how my husband would feel about it because the original “long story” I posted on our Crowdrise page was very open. I felt like I needed to be open to relay the true measure of the desire of my heart. I had Frank read the story expecting him to change it or change his mind about my idea of doing the Crowdrise page and our original fundraiser idea. He didn’t though. He told me that it sounded great and that I should go ahead and do it. That’s when I knew that Heavenly Father was softening both of our hearts to prepare us for the highly emotional months ahead.
Our testimony of Heavenly Father’s plan for all His children was already in place, but because we took the opportunity to share it and the struggles that come with remembering it when faced with Earthly trials - and HOW we remember it, our testimony is stronger. Our anchor, which is our faith and hope in God, is such a blessing. It has been a tremendous experience through all of this sharing so see all the other anchors of others. We are beside ourselves with gratitude for the blessings we are receiving, and coming into the last 24 hours of preparing for this event!  
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