So...after living with my own Cyclic Neutropenia for 30 years and caring for my neutropenic children, I've often wondered how our lives may differ from yours. Do they differ? Initially my answer would have been "no, not really". However once I gave the thought a little more attention my response became more like "hey, ya know....how would I even know"?? This constant state of caution and preventative care has been all I've ever known. Most folks don't give much thought to live bacteria from our own skin being transferred to a pair of jeans. How often do people truthfully clorox wipe their t.v. remote??? Any given day with Brelan and Mileigh and you're likely to hear "hands away from your mouth", "remember we get germs and give germs that way", "Mama, can we clean something too?". Brelan, who thankfully is not neutropenic, is very much aware of neutropenic precautions. Well, as much as her precious 6 year old mind can comprehend. She is in a steady mode of making sure that Mileigh, her baby (neutropenic) sister isn't in harm's way by any definition. She recalls scary admissions from years past.
So...we wear pants once between washes and everyone uses a fresh towel for each shower (that makes for lots of laundry). I don't mind the laundry all that much. Its a small price to pay to prevent skin infections. We swipe as we go and hope by the end of the day something is completely clean (smile). Life is crazy busy and we love every minute of it. Our home is clearly very lived in and in no way "spotless" by my definition. It is a constant effort. Mileigh who is 4, 5 in March, is very much aware of her neutropenia and the structure her life requires. She will be the first to speak up about hand washing or hand sanitizer, she never fails to remind me if I'm late on her GCSF injection, she doesn't forget a thing! Do any little girls?! HA! Out of all three of my girls, Joeli and Mileigh have been the sassy ones. Mileigh might have Joeli beat by a hair (smile)! Brelan is my tender-hearted, snugly one who absolutely adores her Mama. I'll certainly take that any day. I suppose to sum it all up, if you get into the every day, there's lots about our lives that may not be "different" by this world's standards but their affects on our lives are insanely different. Most of these things become natural for neutropenic families but I for one will testify to the occasional weariness of it all. Being a parent is a 24/7 job in general complete with the often bouts of exhaustion for the typical mama. The diagnosis of "Neutropenia" in any form hurls us into a completely different category far from "typical". As they say, "the show must go on"! Our days don't allow for slack. Slack equals "RISK" in a neutropenic world. For now, my girls are small and teachable. It's my job to show them how to take care of the bodies that God blessed them with. Once they're grown and on their own, and hopefully still doing every single thing their mama said, haha...this mama will rest. I know the daily grind of neutropenia gets me down at times and it's all I know. That said I'm quite sure it's the same for some of you and potentially more so due to the rareness and newness of it all. Be encouraged! Often being "down" and realizing just how much strength it takes to do what you do day in and day out will be the fuel you need on another day. Stay strong!! Happy Friday ;)
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