Friday, August 23, 2013

Calendar Girl

I used to aspire to be a photographer that traveled the world and captured those "unseen" moments that many people miss (you have to be very patient). I like capturing those moments.

I am not a traveling photographer. Heck, anymore I barely even call myself a photographer (my family would argue that point with me). My life went in another direction. I still travel, but usually really short distances like to the doctors or to visit family up north.

However, I do still LOVE photography and when Rae was very little (seems so long ago), I started a series (which I never finished) for a calendar. Every month I picked a theme and took pictures of Rae.

January 2011: New Year Baby


February 2011: Little Cupid


March 2011: Catching the Rainbow


April 2011: April Showers
(I was thinking April showers brings May flowers)


May 2011: Brings May Flowers

???

I never made it past April, but these are still some of my favorite photographs I took of Rae. The last two photographs were inspired by another Mom named Adele who writes a blog called Mila's Daydreams (she also has a book). Until I saw the images she created of her daughter I felt despair. How was I going to photograph all those images I dreamed up during my pregnancy when Rae couldn't sit or stand? Adele gave me another way perspectives for those photographs...an aerial view.

I encourage you all to take a crack at this kind of photography with your babies. It is fun and produces some imaginative images. If you don't believe me check out the fan art Adele inspired other parents to create. For an added bonus, you can do the photos while they are sleeping which is sometimes SO much easier.


Thursday, August 15, 2013

Wheel of Fortune: Rae's Gateway to Television

Before Rae was born, I was pretty adamant that her television viewing would be pretty limited and for the most part a non-exsistent part of her life for at least the first two or three years. I'll give you seasoned parents out there a minute to stop laughing at me...

...<drumming fingers on desktop>...

Are you done yet? No? Okay, take another minute to collect yourselves.

...<sigh>...Finished???

About three months after we brought Rae home, I noticed that she liked watching and listening to the giant wheel spin on Wheel of Fortune. She became alert, attentive, and even smiled. I don't know if I gave it much thought at the time, but I knew that colorful wheel was one small key that seemed to unlock something in her. Plus, since it was somewhat educational (work with me here) I felt there was no harm in indulging her in this new interest. Wheel of Fortune was our gateway drug. Pretty soon we were watching Jeopardy (I think it was the be-boops of the board being filled in)  and saw similar results so we indulged a little more. But I tried to resist indulging her during the day. We mostly listened to music (Jazz, Classical, and the Blues) unless I was nursing or she was napping then I watched shows Daddy didn't really care for like Top Chef or House Hunters. No harm, no foul. My plan was intact (sorta). Then "IT" happened...

Rae clutching Elmo, Christmas 2011
She saw Elmo. I can't even remember when she first laid eyes on the jolly red ball of fur, but she LOVED him. She smiled, cooed, baby giggled, and was so animated that I just HAD to let her watch Elmo. So, our new routine included one hour for Sesame Street. That was it! I put my foot down at Sesame Street...not for long though. Before I knew it we were watching Curious George, Sid the Science Kid, Cat in the Hat, Dinosaur Train, and Super Why. But enough was enough! The line has been drawn! She could watch PBS and that's it...very minimal commercials, education focused programming, and it wasn't so obnoxious that I wanted to gouge my eyes out (think Barney...gag!). No Nickelodeon! No Disney! Period!! (hahaha, yeah right!)


PBS eventually became a bit dull (for both of us) after we watched some of the same episodes for the one hundredth time we I had to find something else. I went over to the dark side...Disney Jr! To my surprise...I LOVE Disney Jr (way more than Nickelodeon*) and it is on more often than PBS at this point. Rae LOVES Disney Jr, which is way more important than my loving it. Even her Dad will sit and watch an episode of Sofia the First or Little Einsteins (her all time favorite) that he has never seen before and Rae isn't even be in the room. I tease him about it (usually because I've seen it four or five times already and want to watch grown up programming like Criminal Minds or Perception).


We quickly slid down this slippery slope that I never intended to be on in the first place! Where were the brakes to this cartoon madness? How did we end up here?? How do we stop it???

Rae hugging Doc McStuffins, Christmas 2012
Looking back I can tell you exactly how we ended up watching cartoons as much as we do and it is a very simple answer. Rae was animated. That's it. That is all it took for me to venture onto that slippery slope. My daughter smiled, laughed, bumped her butt on the floor, shook her arms, and showed more emotion during a couple of cartoons then she did before we allowed her to watch them. The shows engage her. Entertain her. Calm her. Teach her...of this I have no doubt. I have no intention of putting the brakes on at this point. We have fully embraced the cartoon madness because it brought something out in her that, until the first spin of that giant wheel of color, we never really saw. Her smiles and giggles are a drug for us and if that means we watch endless hours of Octonauts, Doc McStuffins, or Daniel Tiger's Neighborhood then so be it...

*Just to clarify: I don't really dislike Nickelodeon that much, but I have to draw the line somewhere. We don't let her watch SpongeBob (or shows like it) due to overstimulation. Sure she may laugh, but it is a bit much for her to process at times and she becomes anxious.


**We spoke with her doctors about the TV shows she watches and how often and we were told not to worry about it since she has very limited mobility. Plus, I try to work on her therapy positions and exercises during her programs because she is more distracted and less likely to fight me.

video

In the video, she was watching The Rescuers Down Under by Disney.
This was taken around Christmas of 2012 and those giggles and grins are worth every frame. 

Friday, August 9, 2013

Mess Maker, Mess Maker, Make Me a Mess!

If you meet me five years ago (heck even three years ago to be honest), you may have noticed that I have some quirks (okay...a LOT). Especially when it came to chaos. I like structure (to a degree). I like things being played with in a careful manner. I like toys being put away not just thrown into a random bucket. I like the floors clear of hurdles. These likes do not always go hand in hand with having children. I knew this. I also knew that there were ways to help you chid learn to put toys away properly. When I worked in pre-school that is exactly what we did after free play...we cleaned up and put toys in the designated storage place. Everything was labeled with the item name and a picture. The adults helped. Easy-peasy!

Fast forward to the present.....

Rae doesn't make messes. She never has to put her toys away. She doesn't leave blocks or dolls strewn all over the living room. She never drags my tupperware out to use as a drum set. She doesn't draw on the walls or herself (heck, she would prefer to eat the crayons than draw with them). She doesn't splash water all over the bathroom or pile bubbles on top of her head. Her books stay neat and tidy on the book shelves. If I lay her down or sit her in a chair she is going to stay there. Her clothes are always exactly where I leave them (usually on the chair in her bedroom) and she has yet to misplace a shoe.

This list could go on forever.

It is one of the biggest changes in me that has taken place since Rae was born. Now I love it when my friends bring their kids over and tear up Rae's therapy space (it looks like a toy store). I smiled when one brown haired cutie toddled around my kitchen opening all of my cabinet doors. I joyfully chase after them as the run around trying to find something else to get into. I listen to their endless chatter about absolutely nothing and revel in the beauty of their jibber jabber. The things that used to work my last nerve have become a reprieve from my reality. I don't want my friends to apologize (in fact I apologize for not being "baby proofed"). Heck, I don't even care if they help me clean up. I just want to bask in the normalcy of the mess.

One of the things that bothers me though, my former self is so burned into some people's memory that they feel I am going to get upset if their children bring chaos and messes (gasp!) into our home. Don't get me wrong...our life can be a bit chaotic and messy, but it is a totally unwelcome type of mess. The revolving door of therapists and doctors. The ever growing collection of medical equipment. The box of empty medication bottles and precarious mountain of plastic syringes. The towering stacks of medical paperwork and bills (all of which gets filed in our own Big Book of Boo Boo's...at some point). No one wants that kind of mess!

But, for those brief visits I get to see the messes that could have been and boy it would have been something else! (I wouldn't have appreciated it if Rae wasn't who she is) Looking at it in the rearview mirror allows me to see the beauty of those messes and also shows me how much I've grown from the lessons Rae has taught me (all my former habits can't change...I still keep her toys pretty tidy). I still have so much to learn from her.



A place for everything and everything in its place!

Thursday, August 8, 2013

Yummy Buttery Golden Corn

This past Sunday we tried a new food with Rae. It could have been a bit risky given some of her chewing/swallowing issues, but I felt why not try corn on the cob. She doesn't really do well with corn off of the cob and I thought this might be easier. It was. She took to it like a fish to water. I'm sure the sweet/salty butter dripping off the kernels didn't hurt either!

Bonus: She didn't choke on it!

video

Tuesday, August 6, 2013

The Ramp

For months we have been anticipating the arrival of Rae's wheelchair. One of the biggest projects we have to tackle is the new deck, wheelchair ramp, and driveway extension to accommodate her wheelchair and help me get her in and out of the house easily (our house is almost two feet off the ground and trying to pull her chair up the stairs is a giant pain in the back). Months ago I thrusted myself into planning and fund raising. I didn't write about it much because I was also in the middle of some pretty dark thoughts and heavy emotions (the fog has lifted a bit and I'm coping a little better).

My biggest fund raiser was the garage sale! I posted it on Facebook, craigslist, and our local newspaper. Items were generously donated by friends, family, co-workers, and complete strangers. I can not THANK YOU enough!!! As an added bonus it also made me deal with my own hoarding demons (I so needed to declutter). The day of the sale several friends selflessly gave time out of their Saturday to help us manage the chaos...and it was chaotic! Again I can never THANK YOU ALL enough!!!

Seriously, before the sale my house looked like an episode of hoarders!

Dining Room 1
Dining Room 2
This was my foyer.
Living Room 
Spare Bedroom

That was just what we had stored and sorted inside my house. This is what we had outside...

A large bike trailer jammed packed with goodies!

Then I made banana bread...lots and lots of banana bread. One of the components at our garage sale was a small bake sale. We had cookies, homemade pies, and lots of banana bread.

There were four versions of banana bread.
I stayed up until about midnight the night before the sale making them.

I also created a donation page on YouCaring.com which allowed out of state family and friends to donate. But, I didn't give it as much attention as I did the Facebook Event so it didn't fair as well.

Originally, I had hoped to have the ramp completed by June. As I have said before, "Man plans and God laughs." It is now August and we are finally making progress towards building the ramp. I'm so excited!





I removed the stepping stones yesterday. 

This is a pretty big undertaking...at least to me it is. We are going to have to do some of the work in stages and the final stage will be my favorite part. I plan on cutting out large flowers made of ply wood, painting them bright beautiful colors, and hanging them on the rails of Rae's ramp. Just because we need to build a ramp onto our home, doesn't mean it can't be whimsical and fun. Besides, it is for an almost three year old little girl who looked like this after the first yard sale (we had two) was finished...


(Psst...I still have more stuff...anyone interested in a hot tub?)

Monday, August 5, 2013

Driving Miss Rae

Rae's wheelchair arrived last week. It was very bittersweet. I was so excited when they called me on Monday to schedule its delivery the next day. The excitement continued to build all day Tuesday. When Rusty showed up we greeted him at the door. Rae was grinning from ear to ear as he pushed her new chair up the walkway. I'm pretty sure she knew it was made just for her.

The fitting...she grew so much that
Rusty had to make a new seat.
After we buckled her into her chair, Rusty started making all the necessary adjustments (the only hiccup was the harness...the straps were not long enough) and that's when it hit me...

We just hit a MILESTONE!

It felt like I just did a belly flop from 50 feet. (Ouch!!)

It's here!!!
These are not the kind of milestones any parent thinks of reaching. Yet, here we are...huddled up in my office/Rae's therapy room, adjusting straps and lateral supports, mentally reminding myself of all the positive things this wheelchair means.

  • Rae will be better supported.
  • Rae will be more comfortable.
  • Rae will be easier for me to transport and move around the house and when we're out (she's 33 pounds and turning into a little back breaker).
  • People will see it and know that she's different so maybe they'll stop making presumptions about why she isn't walking (this one's a double edged sword because I'm also thinking..."Oh God people will KNOW she's different!").

Please don't misunderstand what I am saying. I love that she now has her wheelchair. I love the color I selected (Raspberry...it was new this year). I love that she LOVES it! I love the ease with which it turns, the smooth ride, and how it tilts so she can nap (but not the awkwardness of disassembling or reassembling it). I love that she will be more comfortable and supported. I love her wheelchair. I honestly do. I just hate Rett and all these unanticipated "milestones" we now have to look forward to.

Since we took possession of her wheelchair (after the initial order, first fitting, and delivery), we have used it outside of our home twice. Once when I went to the doctor for myself (gasp!) and last night when we went to hear G-Boss sing at church. My parents church has been so supportive and helpful (they helped with the garage sale and some members plan on helping us build her ramp this month). I knew they would just see the smiling, blue eyed angel sitting in a pretty new chair and I felt comfortable and safe taking her there. To my surprise, we weren't the only ones with a wheelchair last night. I'd like to think that our presence there was as much a comfort to her as much as her presence there was to me. We were not alone. Our paths have been different, but we're both pushing pretty pink wheelchairs.

Helping Mr. Rusty with the finishing touches.