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.

Wednesday, April 15, 2015

The "MacGyver of Mother's" Trained Me


A favorite slogan is “Use it up, wear it out, make it do, or do without.” My Grandma Nellie was the epitome of this expression. She taught me the beauty of it. She lived on her family’s farm in Geronimo, Arizona during the Great Depression. She saw her parents do just that, and then when her own time for adulthood came the world she lived in was entering WWII so she was ready to make it even more a part of her life’s mantra, “use it up, wear it out, make it do, or do without.”

She had stashes of lots of things saved throughout the rooms of her house. Anytime we visited her, she was working on some ingenious contraption to fix a problem she had within her home. From the supplies she saved she was able to make anything ranging from a fishing net, to something to fix the broken vacuum with, to a dress for my naked doll. Her mind was limitless in its ability to think of solutions and make them happen. She very well may have been the “MacGyver of Mothers,” able to accomplish any task with a gum wrapper, two buttons, a bobby pin, and some cardboard. It was plain to me as I watched her live that she was not afraid to solve any problem or try something far-fetched to get a job done. I wanted to be like her. She did get teased for her jars full of screws, and her drawers full of container lids – but if a problem needed solved she was the first the family came too to find a solution. This clarity of thinking in regards to problem solving was a gift she was very clearly blessed with by her Heavenly Father.

So as I evaluate my life now I see hope for my future as a MacGyver Mother. I save all my cardboard cereal boxes, metal lids from glass jars, and of course buttons. When a problem arises that I need to solve I try to let the part of my brain that I inherited from my problem solving Grandma kick in. In regards to how I have worked out some details of the Cystic Fibrosis equipment we have around the house I think Grandma would be proud. At first we started with one neb cup for meds, now depending on the med schedule with intermittent antibiotics we can have up to 5 that need washed, sanitized and stored every day for proper drying and use for the next day. Each neb cub has 5 parts to it, so that is 25 little tiny plastic pieces that need to be carefully placed and not lost in the shuffle of other dishes and chores happening around the kitchen sink. Where was I going to store this stuff that needed to dry before it was put away and really it was pointless to “put away” in a cupboard or drawer because it was used frequently enough it was a pointless battle.

Pretty sure that G-Ma would give me a pat on the back for this one. One day as our med schedule was continuing to increase and the problem of storing these neb cub parts while they dried and waited to be reassemble and used I was at the Dollar Store. I noticed a shower rack. Cleanable, easily hung, small drip accommodating shelves. Jackpot. Had it been thought of before by another person for neb cub storage, probably. But to me it was a new idea, given to me as a gift by a Father in Heaven who cares about my worries – even the small ones. This little idea has totally saved me headaches and serves its purpose well. The neb cub parts are stored away from other splashes of the kitchen sink and nowhere close to little hands that can grab them and loose the parts (it’s pretty devastating when the little blue rubber thing on the lid to the neb cup gets lost). To end I found the perfect MacGyver quote, "Ah, yes, that's the handyman side of MacGyver; he likes to make clever little things out of odd bits." Quayle (Deathlock) Thanks Grandma for being a MacGyver Mother and passing on the desire to solve problems out of “odd bits.” Also, P.S. G-ma, I have plans of making a CPT vest skateboard with castor wheels to more easily maneuver them around the house without having to lift them, its going to be awesome.  

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