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 31, 2015

"Cover Them Up" He Said?

This has been a very surprising and intense month. We never expected that our little idea for a bake sale fundraiser would turn into what it has. One of the things that really shook things up was when Vistalight Productions volunteered to make a video about our family to raise awareness about the fundraiser and why we were doing it.
 
Frank and I were both nervous. Him because he would rather be able to be completely off the grid in all aspects of his life (you know live at a high altitude making furniture from the cast off branches of mother nature never seeing anyone or anyone seeing him type thing), and me because I am easily flustered and stutter and don't feel like I can express how I feel when I speak as well as when I can write it down.
 
We know the company though and trusted them and were extremely grateful for the opportunity it was and their generosity. I did exactly what I thought I would do, rambled on, told side stories, etc. Somehow, someway they worked their magic and made a fantastic video. It was never my plan to mention not having a place to plug in the new equipment that Ruby would need. I had thought about it, but figured we would cross that bridge later on. But my comment about it made the edit. It was another way that Heavenly Father would bless our children and our lives.
 
Each CPT vest needs its own designated plug or it voids the warranty for the $15,000 machine, they use a lot of power. Every morning even now we have cords stretched all over creation to make treatments work.  Also needing an outlet are 2 (soon to be 3) SVN machines to be used simultaneously with the vest.
 
A man who doesn't know our family donated the work of an electrician to come into our home and add all the necessary wires, conduit, outlets, breakers, and other electrical words I don't know so that we can all be together during treatments. This effects our family now in providing ease and accessibility to the machines that we use everyday. It will also effect the future of the kids. We have attended a CF Family Education day at PCH when a nationally renowned CF doctor gave an hour long talk on studies that have been done on CF patients and how when they have parents who will sit near them, be in visual sight, make their presence known during the patients treatments that in turn these CF patients will see the value of doing their treatments and have a much higher chance of doing them regularly on their own as they leave the home as an adult. No one will have to go into a separate room to do their treatment, we will continue to be together. These new electrical outlets are HUGE for us!
 
The very nice electrician who came over to do it was talking with me about where would be best for the new outlets. In the room we have the plugs are your standard low to the ground outlets which is tricky because furniture blocks most of those and needs to be moved when we do use them. I asked if we could put the new ones up a bit higher above couch level. He said we could, and then suggested that I could find a way to cover them up if I wanted so they wouldn't stick out.
 
We have them now! He came yesterday and worked hard to get them beautifully installed. We are totally ready for Ruby's vest and can easily access the outlets. Cover them up? Absolutely not! They are a totally wonderful unexpected blessing and we are incredibly pumped to have them!
 
Again, this is something we could never have done on our own and could never have imagined that Heavenly Father would prompt a complete stranger to help our family in this way. Thank you, thank you, thank you!
 


3 comments:

  1. and you made them so cute! What a great story and such kindness to a wonderful family!

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  2. What a blessing! There is so much good in the world.

    ReplyDelete