I have spent the last week sort of adjusting. I've been feeling all out of sorts. Going on vacation sort of made me realize how difficult day to day life can be. Or, it made me aware of how things are here... or because I got a rotten cold everything just has been feeling worse even though nothing has changed.
Marie's doing so well allows time that would normally be spent worried about her to think of other things. Sometimes it strikes me that instead of doing dishes, then washing syringes most people just load the dishwasher and are done. Venting bubbles from Marie's belly has replaced burping, and she wears a mask into the preschool when I drop Josie off for the afternoon. Sometimes, when I'm not at my best and feeling a little down I miss how simple life used to be. If Josie got sick I'd cuddle her for a few days and it would pass. If Marie gets sick I call the doctors to let them know, begin praying, monitor her breathing, ask hospice to come and check her vitals, rock her and hold her and love all over her with a little nagging fear in the back of my head. I miss how easy things used to be.
There are days when I feel completely beat down by the hours of phone calls with insurance and medical billing, Medicaid, etc. The hours of additional nonsense that goes on, the fact that Marie's statement of benefits folder from our insurance company is four inches thick. I've learned that medical billing is something I need to keep up on. I can't trust the bills that come in the mail, I have to double check them as we have repeatedly been billed for things that were not ours to pay. The when that's all done there's still laundry, dishes, and trying to find time for Luke and I so that we stay sane. Sometimes, I just feel tired.
And yet, I willingly, gladly take this all on just to have Marie. She repays me in so many ways... Ugh. I just feel overwhelmed. Advocating is exhausting even though I'm passionate about it, and the struggle to find the hours to provide the care that Marie needs and the hours to provide the time that Josie deserves...
On a brighter note, I finally found a really good macaroni and cheese recipe! This has been on my list for some time, and this one is good! Josie loved it, and Marie liked it too pureed with some half and half.
And finally, I've been meaning to do this forever!
FUNNY THINGS JOSIE SAYS:
This is an old one. On Halloween she was worried about her preschool party. She told me, "Mom, in my class there's way more boys than girls". Why are you worried about that? "Because, what if there's dancing?". Then I had a flash, she expected her very first school party to be like Cinderella's ball!
I burned my wrist on a pot on the stove. Thinking I was alone but still cautious I spelled out my curse words. Later, Josie randomly asked me, "Mom, what does S-H-I-T spell?"
"Bunny drinks really expensive juice. I cannot believe how much his juice box costs." How much does it cost? "$300". Wow, what kind of juice is he drinking? She looked at me like I was a total idiot, "Cranberry."
"Daddy, shave your beard." "Mommy, tell Daddy he needs to shave that beard". Luke looks so deliciously scruffy, I have a total crush on him but I guess Josie doesn't like it.
"Mommy, what's inside of an ant?"
"I think that this candy is purple because God loves purple and He made them that way".
"On this night we do a shower, on this night we do a baff. We do a lot of that because Marie is smelly."
"Why does Christmas take so long to get here?"
I'm going to start a new one, because Marie doesn't say funny things, but she does a lot of things, and they need remembering.
THINGS MARIE DOES:
She can wiggle her ears, and she does it a lot when she's mad.
A chocolate pudding beard all over her chin makes her look alarmingly just like her Daddy.
Marie proved you don't need any noise to laugh. Her silent chuckles are one hundred times better than any belly laugh I have ever heard.
I spent several hours peeling, chopping, spicing apples and I cooked them extra long to make the most wonderful smelling, perfectly textured applesauce ever, just for Marie. She did not like it.
Marie rolled over on her side, either by grabbing the leg of a dining room chair or something. I had been washing dishes and she did it in the few moments between me checking on her. I rushed into the dining room afraid that she hurt herself, or she was stuck, or that she couldn't breath. I rolled her over and she grinned at me. I was terrified and she was thrilled with herself.
I suppose I don't have it so bad after all!
- Luke 2:19 NIV
But Mary treasured up all these things and pondered them in her heart.