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, April 4, 2015

The Cringe of Comparison

 
As ignorant as this sounds, Frank and my attitude about CF is to try not to learn too much out of what our own kids are dealing with currently. You know, keep the blinders on a little bit. Clearly it is silly to pretend that more couldn’t happen, but since our thoughts already wander to the extreme of the disease more often than we like to admit, it’s easier to control those thoughts when we don’t go hunting for extra amount of Cystic Fibrosis information that we currently don’t need to apply. The thought of CFRD (Cystic Fibrosis Related Diabetes), organ transplants (he have heard lots of lung transplant stories but also have heard liver and kidney transplant stories with CF as well), and then the dreaded Burkholderia cepacia (I know I diligently try to avoid any more than what I already know about it), have the same effect as the one scary movie I have ever sat through – literally haunting (12 years and I can’t get this awful movie out of my head seriously).
Knowing our own attitude about in essence keeping to ourselves a bit about our little regimen we duly note that potentially other CF families feel the same way. When you do get into who does what and how long they have been doing it with meds and such it creates new thoughts. Why is my kid on more/less meds than theirs, I wonder if we will have to add that med, are we doing something wrong, etc?
But it is also interesting to note that each step, each med is added gradually. I worry about how we will remember to add another in, stress out about trying to get it done, feel really bad for missing it some days, then finally one day it’s totally part of the routine and fits right in. All of that said here is Maelee and Orson’s morning routine. This all happens before 7:30 am on school days. Sprinkle in the kids eating a good amount of something healthy-ish for breakfast and I feel pretty accomplished when we leave for school.     


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