It's been one of those days. Snowed in, Blue Bell and Tinker Tot playing together, fighting, playing together fighting. I finally made Tinker lay down with me and take a nap since she's been sick lately. She's 6 and still will take a 3 hr nap, go to bed on time, and still sleep 12hrs, and still need a nap. Blue Bell never sleeps. She's never slept through the night since the day she was born and despite medication to help, ADHD and PTSD, she still never sleeps. She was up at 2am last night trying to steal her DS from under my arm. Yes, I was sleeping with it like it was my most favorite stuffed animal. It did keep the girlies quiet for a full 30 mins yesterday....I do have rules though...No DS in the bedroom! Cause I know Blue all too well. She'll wake up and play that thing ALL NIGHT LONG..and be a major cranky tween ALL DAY LONG.
Today has been boring. Boring......never thought I would come to a point in my life where it was BORING. I love boring...just about as much as I love technology and the DS. It's taken me a long time to accept boring as our "new normal." I was used to our lives being dictated on how Roo was doing everyday. Then, I felt guilty after she was gone. There were no medical companies to scream at, "Where is our 02 tank?? WE NEED IT NOW!" There were no 20 billion phone calls a day to fight with insurance companies over new equipment, no PT, no OT, no doctors appointments to keep up with, no going through her dresser of supplies figuring out what I needed to order next. No 90 min routine of drawing up meds in syringes to put through her g-tube, no 30 min. neb txs, no setting up her feeding bag and calculating how long the feeding pump should run, no vest txs, no changing of her broviac and g-tube dressing......are you getting a picture here?
Now, I'm busy listening to Blue and Tinker fight and play. One minute the love each other the next there's yelling. I love every time one of them comes to me and says sissy did this, sissy did that, while I sit and listen to their side of the story, like I didn't hear the whole sissy disagreement cause I'm sitting right in the next room. Then I tell the both of them....get along or ELSE!!! Ya, that tactic always works well.
I love that my girls play together and fight together. Their lives aren't dictated by how many seizures Roo had today, Blue Bell isn't asking me over and over again if she can empty Roo's foley bag, Tinker Tot isn't sequestered away at her Dad's house. Their fighting over silly sissy stuff. "Normal" sibling stuff. Their lives are just beginning. I feared for so long that Blue wouldn't be able to get her childhood back. In some ways, she won't. She witnessed death at such a young age, close up and personal. Tinker Tot's memories are faded and foggy at best.
Hopefully, this will be the worst tragedy of my life. In my 30s....losing my Roo......Hopefully, the chapters of Blue Bell's and Tinker Tot's life will be filled with more JOY then heartache. While I do WANT TO RIP OUT MY HAIR every time I hear "MOOOOOOOOM! Sissy isn't playing NICE!!" I'm so forever grateful that I have these 2 wonderful, bright, annoying, playful, do they know what NO means?, squishy, lovie, little girls.
Today, like every new day, is a new page in our journey. A fresh page waiting to be written. It's just taken awhile for this Mom to get used to the page being written by Blue and Tinker. And not filled up by Roo. It is their time to SHINE.....or fight....wherever the moment takes them. Today was boring......"normal" whatever you want to call it. The best part though.....was when they were quiet for 35 mins....then came bursting in the room, their faces covered in make-up....and I just had to watch their show, play, they made up. Being snowed in isn't all that bad. It was wonderful to watch their imaginations work together.....even though at the end of the play they smacked each other.