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.

Tuesday, March 24, 2015

An Amazing Turn Out for Waffle Love!

The Waffle Love truck coming last night was so exciting. The kids ran and ran in the grass out back and woke up exhausted and happy this morning, so they all bundled up with blankets to continue resting during treatments. Before Orson even got out of his bed he was asking if the waffle truck was still there so they could make him breakfast.
 
Frank and I never imagined how insane the turn out for the truck would end up. The line was continuously strong for 5 hours. I wish I would have thought to take more pictures of the event! They ran the truck an extra hour longer than planned because the line was so long! We even had a neighbor who knows the Waffle Love family jump in the back of the truck, wash up, and helped cook waffles for over 4 hours!
 
The kindness was breathtaking from people that know us first hand, and from friends of friends and strangers. We are so grateful for the work and time from so many families. There were details though of that I never could have. There were women and men who took their whole evening to be there to help. We are blown away.
 
It was unbelievable to see all that was given to us to help us get through the next couple of months of surgery, needed medical machines, and medicine costs. I wish I could bake cookies and deliver them to everyone who came and supported us, but since I can't do that I made everyone a thank you card.  We do have so much love and thanks in our hearts, and we really do think you are awesome. Thanks for helping, caring, and coming!
 

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3 comments:

  1. UnknownMarch 24, 2015 at 12:41 PM

    It was so much fun! I'm so glad that we could come and support your family and get yummy waffles at the same time!

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  2. CaraMarch 24, 2015 at 3:58 PM

    The was a fun time. We came, ate, left and then came back to keep having fun with everyone! We love you all so much!

    ReplyDelete
  3. HeidiMarch 24, 2015 at 6:01 PM

    I wish we could have been there! :) what a fun kickoff event to the fundraiser!

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