So all of us CF moms out there struggle with the balance of keeping life as normal as humanly possible, and still getting in every treatment, every nebulizer, finding food that has enough calories to count without being ridiculously unhealthy....its daily.
Life has been a pretty steady go, go, go for the past couple of weeks. Adjustment to a new house, new time lines, new routines and still attempting to find that balance. Work, play, and an extra pitter patter around the house make for some hectic times...but we're managing.
The best cure for insanity is routine. Regardless of what else is going on, there should be some things that always remain the same, or as close to it as humanly possible....
We wake up and do a vest treatment. period. end of story. If we have to be somewhere, we get up early, its just the way it goes....if we happen to sleep in, that's fine too, its done when we hit the floor and get good and awake.
No matter where we are, Natalie has snacks at her disposal for snack times. Snack times remain the same, just like meal times. This requires that I carry a bag that looks much like I just came from the grocery... disposable plastic spoons by the box, cups of applesauce, enzymes in my purse, enzymes in my bag, half the time my purse looks more like a pharmacy than an actual purse....but its a must, especially if you're on the road all day....stopping every 2 hours to eat or grab something just isn't feasible when you live in the area I live in....its usually 20-30 minutes for me to get where I want to go.....and it makes mommy gain weight faster than Natalie ever will ;) plus, it gets mad expensive to try and buy EVERYTHING while you're out....
We are blessed that Natalie's mid day routine is focused strictly on play time, her nebulizers are only once a day and therefore we are free from the time we finish her first vest treatment, until right before bed.
Dinner is later for us...we aren't ready until between 7 and 8....if there is company coming later than that, the meal is still made in time to feed Natalie between 7 and 8, if she chooses to eat again when everyone else does, so be it. This makes dinner time less of a hassle and much more relaxing....(when she isn't trying to get me to dress her baby dolls while i eat :)
Our bed time routine is a little more hectic....she's 3, she's never ready to go to bed so bath time is our cut off. We get a bath every night and both of the girls know that after bath....its quiet time...vest time....nebulizer time....time to just sit still. This goes over much like a lead balloon with Natalie and the fact that Caitlin is 10 and no longer finds it fun to play in the bath tub with Natalie makes the process long and not near as relaxing as it used to be....its another hair pulling, make you want to hide in a corner part of the day...there are many with having these two girls the ages that they are. I honestly thought that having them this far apart would be a blessing, after all what could a 3 year old and a 10 year old possibly have to argue over? The answer to that is everything.....EVERYTHING.
It looks pretty when you write it all out...it looks like you could fit it into a nice little box and put a bow on it....but it doesn't always work.
Vest system hoses flying off, being pulled off and used as a hair dryer when mommy isn't looking....
The Vest being unplugged from the wall by a mysterious person named "Idunno" followed with a proud exclamation, "Mommy, I all done, I got all the junk out!" ......
Caitlin screaming because Natalie touched her, or knocking one of her dolls slightly askew while she was doing "inventory".....
Natalie screaming because Avery has decided that her vest console is the new place to sit....or pushing the buttons.....or just plain looking at her wrong...
It runs over me sometimes....sometimes I don't feel the need to fight back...sometimes I am overwhelmed, sometimes I am tired, sometimes i wear blinders and don't want to see the dark circles under her eyes, or just how tiny those little legs are, I don't want to feel how thin she is when she crawls in my lap....I just want it to go away.....
Its a crazy life, you worry when no one is looking, you put on a good face and smile and tell everyone you're fine, she's fine, everything is fine....just fine. No one understands what creeps in when no one is there, no one understands why you hesitate just a tad when correcting her, no one understands why you just cant bring yourself to tell her no when she asks for a toy every single day of the week....no one knows what its like to live with the very real possibility that you will bury your child. It makes you hard, it makes you indifferent to life's smaller issues, it makes you rush....I need to provide her with her life experiences now, what if tomorrow is too late. I want them to have everything they want and I want them to have it together, memories together, playing, fighting, hiding under the covers with a flashlight....I need that for them now. I am growing impatient with myself, but there is only so much I can do...I work enough.... I want my girls to remember me, not my job. I want my girls to see life for what it is, a beautiful experience...not a chore....its not a chore.
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