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, March 11, 2015

TOBI Came Camping

I married into a camping family. This family of my husbands is a true blue traditional method camping kind of family. Tents only, "go see a man about a horse" (a.k.a take a long enough walk away from camp that no one will see you drop your drawers) when you had to go to the bathroom kind of family.
 
Camping for me was more of a foreign experience not doing it really ever. I remember going as a newly married couple with his parents and siblings for the first time to camp and get wood. I then witnessed for the first time the true grit of my mother in law, who as petite of a woman as she is, can swing an axe with the furry of a seasoned lumberjack or lumberjill I guess.
 
I didn't want them to think I was a too-good-for-dirt-city girl, but was honestly terrified to take our baby girl camping. Camping was one of the things on my mental list that sent me into the germaphobe fetal position.
 
She was too little to go camping anyway her first summer, and I can't remember how but I dogged the camping bullet her second summer too. Her third summer though we had no reason not to go besides TOBI (a specialty antibiotic to combat pseudomonas). My husband was so bummed that we had missed those past camping summer trips that we were determined not to let TOBI stop us from going again. 
 
I tried to be as best prepared as I could. Lots of extra towels and paper towels for drying the cup after she used it, a special cooler set aside to carry the refrigerated medicine, books to read in the car while she sat through the treatment twice a day for 25 minutes, several containers of soap, a special new pot to sanitize the equipment in after each use, and Frank found the converter we needed to run the nebulizer.
 
What we were not prepared for however on that camping trip was TOBI being the least of our worries. We hadn't taken into account that our 2 year old, while doing fabulously well using the toilet at home, had never attempted to go to the bathroom in the woods. It turns out that it is terrifying for a 2 year old to poop in the woods. Her fear and trepidation quickly stopped her from even trying and that curly haired 2 year old went through all 20 pairs of underwear I had packed for her (literally 20 pairs, one of the ways I compensated for my camping germ fear was to bring all the clothes she owned with us JUST in case) and I spent my time hand washing her princess undies while Frank held them over the fire with a stick to dry them.
 
Although a pretty terrible experience then, it is one of our favorite memories now to think of Frank waving the little underwear over the fire to dry them on a stick. Its good to know that even though TOBI came with us it didn't ruin the trip and Maelee was just a regular 2 year old on a camping trip. We also proved to ourselves as husband and wife that if we can tag team through poopy undies and sanitizing neb cups we can be a camping family after all.
 
 
 
 

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1 comment:

  1. MaryMarch 12, 2015 at 7:01 AM

    Thanks for the early morning chuckle of poopy panties and the drying stick.

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