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.

Saturday, March 28, 2015

Charlie-Bots are Ready!

 
Charlie's "take-apart-box" came into full time use during the assembly of these robots. His favorite hobby is taking apart unwanted electronics (or really anything with visible screws to unscrew). He has gotten to take apart an automatic stapler, lots of flashlights, an old printer, cell phones, computers, and lots of other random items. His favorite thing to take apart was on old VCR.
 
When I see the old "mother board's" on some of the stuff he has spread out during his un-assembly sessions I flash back to when I was growing up watching my Dad take up apart his computers. He also loved to see how they worked and could mostly fix and put them back together himself. Dad would spend hours on the phone with his friends who knew he had computer knowledge trying to fix their computers over the phone and then end up over at their house doing it in person. So G-pa JLB passed on his tinkering to Charles I suppose.
 
Charlie-Bot's will be available at the April 11, 2015 CF Is Not Forever fundraiser.
5pm Cardon Park 2540 E. Fairview, Mesa, Az 85204
 
 

Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)