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.

Sunday, September 13, 2015

An Irrational Sense of Project Optimism

      Growing up, my Dad traveled a lot for his job and was often gone during the week and home on the weekends, or sometimes gone for a couple of weeks. It never occurred to me then that my Mom was taking care of six kids without help because she never talked about it being a “burden” or made a fuss about it. Even when she needed to take sleepy kids in the van for a late airport pick up she didn’t complain. We had great music that we would listen to and it would be a party all the way to the airport. Dad would be standing there waiting on the curb at Phoenix Sky Harbor Airport and we would roll up in the van with all the windows down and the favorite song of the season, often “500 Miles” by the Proclaimers, would be blaring and he would laugh at us, throw his luggage in the back and then we would all listen to him talk to Mom about his flight, meetings, hotel, etc on the way home. Always mixed in his stories of his trips he would talk about this or that persons reaction to the fact that he had six kids. He loved telling people that.

      This pattern worked well for my Mom and Dad. They even seemed to thrive on it I think. Mom’s most creative and ambitious energy was unleashed while Dad was traveling. She would paint rooms, tile the kitchen, move furniture around, re-do the backyard, lots of good stuff. I distinctly remember that although she preferred neutral shades (unlike me whose house looks close to an underground graffiti tunnel as far as COLOR goes) it was always important to know the name of the paint color you chose (she liked marshmallow and carnation petal). So besides my paint colors being different (bulls eye red, blue jay crest blue) it comes as no surprise when my husband goes out of town that my mind starts spinning of possible projects to accomplish.

       So this past weekend when Frank went out of town I had a massive mental list of projects. I had chairs to finish painting, a curio cabinet to finish painting, Orson’s top secret birthday present to work on, a book I am reading to finish, a baby blanket to tie, a queen size blanket to tie, closets I wanted to dump and organize, and my most newly acquired project making blouses for myself. It comes as little surprise that most of the things on this list did not get done. I took some bites out of a few, but no where near what I thought I would be able to get done. By the 3rd night of my insanity of staying up way too late and following a Saturday of being “cranky mom” here came Sunday. What a relief!

       Sunday was such a great day. There has been a substantial emphasis on keeping the Sabbath day holy, and “making Sunday different” lately in many of our church meetings. I am not able to get there every Sunday, get my heart there I mean and the attitude I should have in regards to “church day” as Orson calls it. But today totally worked out. The kids played nicely together. I didn’t stress about getting anything extra done. I focused on food, our “treatments” (aka medical routines), and getting them ready for church. We had fun, it was chill. Everything at church spoken was just what my heart needed.It was a different day, a welcomed different, and my testimony of what keeping the Sabbath day holy can do for a family (and for a Mom with an irrational sense of project optimism) was strengthened.

Plus Dad came home today, and if we could pick a song to play for him to embody the music we have been really into lately as a family it would have to be “Dance Like Nobody’s Watching,” a snappy tune from the PBS Kids Odd Squad soundtrack. Don’t knock it until you’ve tried it!


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