We have been back home and trying to find a routine for Myah and her new medical plan. Its not as easy as we thought. We both have cried, we both lost our cool at times but at the end of the day we are coming closer to this new path.
This is as normal as normal can be for us right now. Its all about 'acceptance". I hate that word..I feel as if I am throwing in the towel oppose to fighting to change the outcome..but for now its all we have...
R-
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We have also been trying to come up with a good medical plan for Lily. Last night, I put the kids to bed & then had all of her catheter supplies out, trying to sterilize them & organize them....I pretty much lost my cool...sometimes, it's really hard for me to keep it together and other days I feel like supermom, amazed at all I juggle and what I've learned to do. I often wish I had spent 10 years as a nurse, not a teacher - it sure would have helped with Lily!
Just thought it might help to know that others are out there trying to figure things out too.
Thank God for God!! If I didn't have my faith, I really would have lost it by now!
Hang in there!
Rachel, I so needed to read your post..I at times feel like I am so off sync and that everyone around me (those who are in the same boat) have it all together...
I have never had a day planner before..I was SO in control and managed my life off the top of my head..That is not the case any longer..My life has been taken over by the clock..I am now counting hours for the next time, the next dose and turning timers to ring and remind me.I have a day planner writing things down ..to order this and fill that..I feel like a clown at the circus juggling things around..the funny thing is ...its not funny!
I just saw that you commented back! Hopefully, things have gotten a little easier for you.
I hear you on setting timers! We're just waiting on a supply order and then we have to start doing a certain procedure 3x/day - blah! Lily hates it & it hurts her therefore hurting us too...I'm grateful she's alive & thriving, but hate what it takes to keep her that way, if that makes sense...
If nothing else, get a really cute timer and day planner, since you'll be looking at if often, it's the little things:)
Have a great weekend!
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