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.

Monday, April 13, 2015

Our Miracle - the Results

My friends that came and asked if they could expand my vision of the fundraiser were Shelle, and MJ. MJ was the food master, committee former, meeting planner, ultimate cheerleader & encourager, t-shirt and wrist band order woman, and so much more than I realize or know I am sure. MJ today described what Shelle and her family did best in a letter to the committee of people that worked so hard on this fundraiser:
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" Dear amazing Adams Fundraiser committee,

 I can't believe that it is over.  We have been planning for the past 6 weeks and all the effort, thought, planning, hardwork, worry and stress paid off.  I would call it a HUGE success.

 Shelle was the instigator and the brains.  She's the one that said, "Let's make it happen!"  and she did.  I am in awe at the countless hours she and her family spent in planning and prepping.  She brought the life to the party!  (Just the number of pennant banners she sewed makes me tired thinking about it.)  Shelle gave all that she had, her time, her energy, her creativity and it produced that best party I've ever seen.

 Shelle and I were talking and she commented that it has been so nice to have such an amazing committee.  So many of you volunteered for assignments and then ran with it above and beyond.  Lots of people commented to me that our neighborhood is so good at pulling off big things.  I can't even begin to mention the flyers ditributors, the phone calls, the business contacts, the techonology learned (google docs/signup genius), the entertainment (genius at bringing in outsiders), the emails to friends and family, the bake sale bakers, the donators, the booth workers, the cleanup clew, the facebookers, and on and on and on...

 When you have Shelle's vision (and family) and a talented hard working committee then miracles happen."
I could not agree more with her description of Shelle and the work that she and her family were able to do. Mind blowing!
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This event was like something you would see in a movie, the folks that put on the bazaar in the movie "Pollyanna" would be proud. People were setting up from 7am on the morning of the event and taking down until midnight that night, and 2 days prior. The "kiddie land" was a huge undertaking as well with my friend Mandi and so many others thinking of all these details to make it supremely fun. My kids had such a blast going through all the booths, over and over and over again. Orson went to sleep the night of the fundraiser mumbling over and over in a tired stupor "I had so much fun, I got so many prizes." Over an over. Then he woke up saying he dreamed about the party and prizes, and thought he should get to have one gumball before breakfast. The bake sale was filled with gorgeous items that sold quickly. Lots of talented bakers spent their Saturday and Friday night's working their rolling pin and measuring magic. People sat at the will call table and collected all the prepay dinner guests. My mom, sisters, brothers, mother in law, father in law, brother and sister in law, and my baby sister in law all came and worked the event. We had a photographer who donated her time and talents and put up with the challenge of me pulling my kids away from the kiddle land for a family picture. The delicious meat was smoked in smokers split between two different houses, hauled to the event, and then the same workers and more stood and served food for hours. 600 meals were served. It is dangerous to try to think of all the areas that people helped in because it was so vast and varied and all the little details that made it all come together were needed and completed with style.
So much thanks, gratitude and appreciation for everything. Let me tell you how all of these efforts has changed our life.
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Between the Crowdrise donations, the Waffle Love night, personal donations, and the BIG AWESOME PARTY on April 11 we have the help to get through our current medical expenses. This does not include the electrical work to support the machines that was donated to our family, which we never would have done on our own, such a huge blessing. There was also a recent anonymous donation of 3 new medical compressors, the identical kind we were motivated to raise money for in the first place. The blessings we have received are so much bigger than we ever feel we could have asked for. 
I won't cry after I make calls to our mail order pharmacy to order what is needed. Because I know now that there is money there to pay for it. 
Frank will be able to sleep at night.      
   
With Orson's new g-tube we will be able to go into the surgery this month only worried about him and his care, instead of adding onto that worry how in tarnation we will ever be able to pay the bill. I know we have what we need to pay for the new equipment this will bring into the house and the supplements he will need every night as he sleeps.
I know that as soon as baby Ruby is ready she will get her CPT vest.
Frank and I were able to work together in a very cool way to do our part of the fundraiser and build our relationship as husband and wife.
Every day and night when I turn on our new compressors to run meds I won't think, "Does this sound funny? Is this even working right anymore? Man we need a new machine!" The peace of mind the new compressors brings, is hard to describe, a great comfort.
We met 5 new CF families, some online, and some that came to the fundraiser. I looked into the eyes of the parents in these families, and saw that they knew exactly the worries in our hearts, and also the hope that the love that exists within a family unit brings. Some of the parents we met had children that have died. One had a son that even came to the fundraiser. He has had a liver transplant and doesn't right now, but did have a g-tube for 14 years.
Our kids will remember this event and the efforts of all the people who helped for all their lives. We won't let them forget:) The cheering of all these loving people around them has given the kids and us the courage to live with enthusiasm and joy despite physical trials. The example that has been set for them, and the love that has been shown and given to our family has changed us all.  A friend described it yesterday as an example of people being "one body in Christ."
"So we, being many, are one body in Christ, and every one members one of another." (Romans 12:5)
Because what happened for our family from the support of those around us was truly an example of Christ like love. We sincerely thank all who have donated and who were involved in these miraculous events in anyway.  
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