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.

Tuesday, July 25, 2017

Finding Another Reason for Tears, Slap Fights, and Airing of Grievances


      

 “WE NEED MORE POWER SCOTTY!”
“I’M GIVING IT ALL I’VE GOT!”



Or at least that is what we used to say previous to 2015 when we had a very generous stranger help us with that problem in our previous residence. We had all these perfect outlets in the area of our home we did treatments in and it was very sincerely a beautiful thing to a family in need of power for medical devices, like 6 of them at once. Then recently after 10 years in that home we moved into a different residence and left our dedicated medical equipment circuits behind.

     I was so happy with our new residence that I refused to admit there would be any issues with the electricity there. I thought, “well make this work. I can figure out a way to shuffle the machines around so that we can still get them done together.” But really it didn’t work. I was always worried I was either going to blow up one of their expensive machines or blow up the house. I was waiting to relive the scene from “Money Pit,” with Tom Hanks in the kitchen at any moment.




     After I accepted the reality of needing to get more electrical work done in our new place, we were able to soon have the assistance of our friend who is an electrician come to help us fix the outlets in our treatment/family/front room so that we could all be one big happy treatment family again. Still though all the cords and tubing with three SVN machines running (3 power cords, 3 tubing hoses) and three CPT machines (three power cords and six hoses) running twice a day and still being able to function in that room during non-treatment times was daunting. We didn’t think that it could be improved upon really though until one day this summer it did. It all began with a shocking statement by my husband.

The Chaotic Nonsense
The Beautiful Sense
     I say shocking because really it was. He said that he, “thinks I should get more of those IKEA rolling carts so all the kids have their own.” The shocking part was him suggesting a trip to IKEA. We had one IKEA rolling cart and were using it for only the SVN machines which complicated things because it forced the kids to all be close enough to that cart to reach their tubing. With my kids, forced closeness in proximity to siblings equals tears, slap fights, and excessive airing of grievances. So Frank helped me think more clearly and get us organized for the gauntlet of the 2017-2018 school year by helping my see past my mental block of treatment time being an unfixable tangle of cords and bodies to the kids having versatile range of motion during treatments. Instead of me setting it up for a group of people all trying to perform the same function simultaneously it is now very logically set up for three separate people doing their own treatments separately. Basically instead of nonsense we now have sense.

     Now I will take the time to give thunderous rounds of applause to my husband for not only seeing the plight and fixing it but doing all the dirty work (going to IKEA and putting the carts together) to achieve a huge assistance to my Air Traffic Control Tower problem each morning during treatments. Now surely the kids will be ingenious enough to find something else in the morning hours to cause the battles of tears, slap fights, and excessive airing of grievances because I'm sure will miss that excitement. A mother has to be realistic after all.

PS – I also want to thank the always diligent Swedish based designers of IKEA who help our home to be a better functioning place. In other words, IKEA, I love you.

    
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