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, August 15, 2015

The Summer of Sunscreen on the Toilet Seat





The summer never goes as beautifully as I plan and dream of that last month of school when I have a rush of excitement of being done with the school day grind. I had big dreams of one planned "fun thing," for every weekday that we discussed as a family at the beginning of the summer during a family home evening. Mondays was baking day, Tuesdays we were supposed to go to the library – etc. Before we could do this fun thing we were going to work on memorizing a scripture, do a chore, and do some school work. I could picture the synchronization of our day. I pictured the kids falling into this amazing summer routine in which they would all work together, get along, and be utterly content in this lovely planning of our time before school would start again.

The reality check I discovered was that I was pretty huge and pretty exhausted in the last month of pregnancy by the last day of school, more so as each day passed. We attempted to start our schedule and had some marginal success the first week, but quickly it spiraled into me and the kids winging it. So instead of the summer being the summer of a lovely synchronization of time well planned it looked more like this:

Me doing whatever it takes to convince the kids that I had no business in a swimsuit and that swimming in 110 degree weather was really over rated. The kids hoping each day for monsoon storm clouds so they could run outside into the playhouse and camp out in there during the rain (they were very disappointed we didn’t get much rain, but made me promise that as soon as it really did rain they could run to the playhouse). Figuring out how to use a 2 ounce syringe to do bolus feeds after Orson ate breakfast and lunch so we could get one of his cans of “medical food” in during the day instead of doing two at night. Maelee getting baptized and shouting, "I DID IT, I REALLY DID IT!," in the changing room at the church when she was done. Forts being built in the kids bedrooms, the idea being to partition of their room into blanket rooms for each person. Charles still has his fort up around his bed – going strong for 4 weeks now. Ruby being born. Frank and I deciding to have a marathon watch of all the Pirates of the Caribbean movies on the nights he had off from work for the baby. While at the same time I had started reading the “Work and the Glory” series for the first time. I had some pretty crazy dreams with the two stories mixed, pirates and pioneers that is. Orson got a hold of the spray on sunscreen one day and coated the entire bathroom with it. It took a while to get the sunscreen off the toilet seat and floor. Some mysterious things started happening. The mystery of “who cut Orson’s sheets with scissors” was nearly unsolvable. Similar to the mystery of “how the pee keeps getting in the corner opposite the toilet instead of in the toilet,” was also a tough one. It was a little ironic that when we walked in the door from Ruby’s hospital stay her sister had just thrown up and the kids had sick stomachs for the next couple of days. Then there were several times when each of our hearts was individually melted as baby Ruby held our finger or when she sang out a little happy song.

So although we absolutely cannot say it was a summer of beach trips or theme parks, we can say unique memories were made AND we got an awesome new sister. I have no doubt that we will make a point of discussing the memories of this particular summer for many years to come.




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