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.

Sunday, April 12, 2015

LIfted with Love : The symphony of April 11, 2015

At girls camp last year the theme song was "Glorious"
written by Stephanie Mabey, and performed by Russ Dixon.

The words to the song kept coming to my mind throughout the past month or so of this planning and preparing for the Adams Family CF Is Not Forever Fundraiser that happened last night.

When I began the idea I started drawing up the words to what I thought would be the shirt design we would use, and the "slogan" if you will. I wanted to express in the slogan that we know that our CF is something the kids will have only while we are here on earth, not after we are resurrected and begin our eternal post-mortal life. So my mind came up with "DF508 Only Now Not Later." DF508 is our specific CF genetic mutation. It made sense to me, but it soon became obvious that it was not easy to figure out for anyone else. Even Frank was like, so what do you mean by that?  
 



Then one night after we had met with our friends that wanted to help us with the event, to make it bigger than we could have ever dreamed of, lighting struck my brain. I know that the "lighting" was really the Spirit, or Holy Ghost, that helped me to know a simpler phrase to express the idea. "CF Is Not Forever" is what was brought to my mind. I know that Cystic Fibrosis is not forever, but our family can be and will be forever, as we work towards our Savior's example and keep our covenants.

This was the beginning of my symphony, or whisperings of the Holy Ghost, that helped me to write my blog posts, prepare for our small part of this fundraiser, and help the others who were preparing for the grandeur of the night that has changed our families life.

There were hours spent by many that I know, and many I do not. It started with one video to raise awareness about our story and the event, and then turned into several more that our family treasures. The gathering of donations was done by an army of friends and neighbors who took of their own time, with no personal benefit, to help the event be a success. The money for the meat and other food was donated by very generous friends. The t-shirts, and wrist bands were ordered, planning to feed 600 people was underway, details of trash and port-a-jons happened, the space we used for the event with stadium lighting and power was donated for use, people came three days in advance to lift, carry, move, and set up massive canopies. Large sound equipment was set up, a stage was assembled, bands and other unique and beautiful musical and dance groups came and gave of their talents and time. The details and donations for the raffle and silent auction were mind blowing in themselves. Other peoples husbands, wives, sisters, brothers, daughters, sons, cousins, neighbors, and friends all had a part in this crazy awesome "symphony."

We are still working out the details of the end monetary result and will know final numbers on that in a few days. But what happened for Frank and I as parents was this - a burden has been lifted, lifted with love by our community. It feels impossible to express the appreciation we feel for what has been done for our peace of mind about the earthly burdens of CF. We know get the privilege of thanking, or trying to thank all those who helped us in a way we could not help ourselves.
 
=======Here are the words to the "Glorious" song===============
There are times when you might feel aimless
And can’t see the places where you belong

But you will find that there is a purpose
It’s been there within you all along

And when you’re near it
You can almost hear it

It’s like a symphony just keep listening
And pretty soon you’ll start to figure out your part
Everyone plays a piece and there are melodies
In each one of us, oh, it’s glorious
You will know how to let it ring out
As you discover who you are

Others around you will start to wake up
To the sounds that are in their hearts

It’s so amazing
What we’re all creating

It’s like a symphony just keep listening
And pretty soon you’ll start to figure out your part
Everyone plays a piece and there are melodies
In each one of us, oh, it’s glorious
And as you feel, the notes build, you will see

It’s like a symphony just keep listening
And pretty soon you’ll start to figure out your part
Everyone plays a piece and there are melodies
In each one of us, oh, it’s glorious.

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 

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