Ever wonder what it's like to care for Callista or see the world from her eyes? In celebration of her being home from the NICU for three years, here's how I imagine she sees things...
Typical Weekend (we like weekends, no appointments!)
7:00am- It's light out. It's definitely time to wake up. I see that my mother is still trying to sleep in, but it's light out. So I will yell every word I know how to say until she finally caves in. I can't move myself or entertain myself so I depend on this lady every moment of the day, even when she's tired! Don't worry though, I know she can't be mad when she sees my smiling face and I say "Hi Mama". Gets her every time!
7:15am- Mom gets me cleaned up and dressed. I like clothes, I like to laugh at them and have them covering my face even though I know that's not where they belong. I can't help mommy get me dressed since I don't know how to make my arms or legs work that way, but I try my best to push them through. My mom keeps me stylin' so I don't mind! I enjoy getting my teeth brushed, but my hair is a different story. No one can get it right, so I cry and I cry and say "There ya go!" (code for: give me that!) until someone hands me my own comb. Sure, most people might not brush their face, but it works for me!
8:00am- It's med time! I know this because I recognize what syringes are, and I am thoroughly convinced they are all water. I am also a huge help to my mommy and show her this by demanding to hold syringes as she finishes. After all, who else will work hard to put two syringe tips together over and over and over again? Mommy does that part wrong. If the syringes aren't in my hands fast enough, I am sure to throw a fit until I get what I want. Hey, that's what happens when you lack language skills. Everyone caves in and gets you what you want if you yell long enough!
9:00am- I've been saying "eat" and "hungry" every five seconds for the last half hour, so it's about time this woman feeds me. Apparently I am on a "strict schedule", whatever that means! It's finally time for me to get some real food. This tube stuff is overrated. I mean, I can't even taste it. And if I could, it doesn't exactly smell like I'd like it. But the food in the little jars, that's what I'm talking about! I'd like to eat the whole jar, but my tummy doesn't let me. Mommy usually makes me stop at 1/2 or 3/4 of a jar so I don't puke. I mean, I try to puke all the time, I don't know what the big deal is.... Sometimes I even make the adults run like crazy to grab a tube and vent me (take the air bubbles out of my stomach). Sometimes there's a need for it, and sometimes I am just being rotten. Hehe!
So now we've got some free time. Since I can't move myself, mommy helps me go between my chair, the floor, and my playmat. Of course, we get plenty of lap time in as well, because I like to cuddle (when it's my idea). Even though I am three, I can't play with toys like most three year olds do. I need mommy to hold things for me and help me move my hands and arms where I want them to go. I have mastered making my Elsa doll sing. I do it over and over. I can tell mom likes it because she makes the best faces after the fourth or fifth time "Let it Go" has played :)
I've heard from several folks that my "core muscles" are getting stronger and I work hard at holding myself up, but some support from my special chair and my favorite lady in the world always works too! I've been trying hard to control my wheelchair too, but our house isn't made for the wide open spaces I need right now. We try our best to not run into things, but we need a room downstairs just for me! We've been working on raising money for that since I cannot use the rooms upstairs in our house. On the plus side, it's been what they call "nice" outside lately. Personally, I rather enjoy having wind blow up my nose and I open my mouth to taste it. And rain, rain is so much fun but mom never lets me hang out in it. We practice using the chair outside, which is much easier. I can go wherever I want. Sometimes I go too fast and mommy chases me. It's funny. I like to follow the cats around, and they love it (read; they are terrified but too stupid to stay out of the way).
I also love to swing. I tell mommy "outside" and we go swing on the porch. I like to eat the wind and relax in the sunshine. I'd really like to take a nap in my swing, but no one else seems to go for that idea. In fact, that's pretty much the only place I would willingly take a nap. I put up quite the fight in any other spot!
1:00p- Yay!! It's time to eat again! This time, I get some food through my tube AND some of that jar goodness too. I hope she feeds me fast enough. Otherwise, I will be sure to let her know by yelling "hungry!" and "more bite!". And don't you dare eat something in front of me, because I will be demanding a bite of that too, even if I cannot logically eat it (breadsticks anyone?!). I also get more meds at this time. They try to sneak those in there, but I am a smart cookie and I know what those little syringes do. But there's food, so I let it slide.
1:30p- Speaking of naps, it's now time for me to avoid one.
2:30p- Okay, I caved and slept. But I put up a valiant effort before finally succumbing to the tiredness that is called Three Years Old. I wasn't really tired, I swear. Now it's time to get strapped in my stander. It's this thing that looks a little like a torture device but it's awesome. It helps me stand up straight and play upright. Even though I cannot stand on my own legs, I still need to put weight on them so I can grow. My stander helps me bear weight through my hips, legs, and feet. (Here's a good read on Standers and why they are important. Not that I can read or anything ;) http://physical-therapy.advanceweb.com/Features/Articles/Embracing-Gravity.aspx) Since I've been using my stander regularly, my feet have grown! I still wear size 4 teeny tiny shoes. Since my feet are shaped weird due to my muscle tone and not using them, mom has a hard time finding cute shoes to fit my little piggies. While I am in my stander, I like to be wheeled around the room to move, it's fun to pretend to dance. I like to play with toys on my tray and throw them on the ground for someone to pick up.
3:00p- This one is a little personal.... Because of my spinal cord damage, I have neurogenic bowel and bladder. That means that those parts of me don't work right and I need a little help. I have a vesicostomy (a hole under my belly button) to help my urine drain into my diaper. This way, it doesn't reflux into my kidneys and scar them. I guess these kidney things are important, because I get mine looked at pretty frequently. I don't have the ability to go #2 on my own, so every day I get a suppository to keep my belly from being in pain.
Insert more free time here. I will probably request "a book" several times. I love to look at books. I want to turn my own pages though, even if whoever is reading isn't actually done with that page. If it's nice, we will go outside again to swing or drive my wheelchair. Or if I am feeling cranky and don't want to play with anyone, I will lay in my playmat and bang some things around. My mom does my hand and leg stretches to work my muscles and get them loosened up. I might do tummy time again. Or I might smash my face into the mat and pretend I don't know how, I haven't decided yet. I will probably sing my ABC's and watch some Disney Junior. That Sophia the First really knows what's up! I like that girl!
5:00p- Woo hoo! It's eating time again! This time, I get water through my tube and more jar food. It goes about the same as before. Better shovel it in fast mom, or I will complain to dad. And whoever else will listen to me whine about eating and being hungry two minutes after I've already eaten. This also means it's time to see Daddy before he goes to work. I love that guy. And I cry when he leaves, because in my mind, I should get to keep everyone I know and love 24/7. Who else will make funny sounds at me and talk nonsense words?!
7:00p- The lights are dimmed and I know something is up. This lady is going to try to make me go to sleep!! The big bag of night time food is on my pole and it's hooked to my tube. Ah man, maybe if I pretend to be interested in these toys she will let me stay up. Must. Stay. Awake. Cuddle time is nice though, I like to snuggle with my mom while I pretend to not be sleepy.
10:00p- Mommy tries not to wake me up when she changes my diaper on last time and gives my night time medicines. I turn on my cuteness and sing Twinkle Twinkle in my sleep. We get one more good night cuddle in and I get my beauty rest. You can't look this adorable every day without it! Night-night everyone <3
