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, July 18, 2016

Sanity Choices : The Pee Drops

Although I have not been writing much on the CF Is Not Forever blog, I still know that indeed CF Is Not Forever. Ideas for posts sometimes float through my brain but I have not been catching them quick enough. I have been enjoying the summer with my family. Also I have been working on a personal life changing goal. Silly to some perhaps, but one I have thoroughly enjoyed working on and am still working on. I hope I get it done in the allotted average time (about 6 months) but each step I take on my project helps me to feel more focused on what I really enjoy doing and what needs to be done. The best part about this project is that for once it is a project that is clearing my life instead of filling it. I hope to finish the project and write about it when its complete.

In the mean time as a sort-of-byproduct to my current big project I illustrated a little comic that may or may not ring true to other mothers of multiple children. My oldest daughter happened to see it after I was done (She likes to snoop on my desk. One of her favorite and best talents is snooping so I let her do it to me now in realization that I am also doing it to her in her room and will continue to do it at an increasing pace as she gets older) and told me it was funny and she liked it. So it gave me the courage to post it on the blog in lieu of my lack of posting. Maybe I will make more, maybe I won't, but it was a fun way to spend my time last night anyhow.

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