Playing With and For My Daughter

*ding*

The chime on my little girls Playskool kitchenette oven just chimed and that means the cake is done. She gleefully opens the door and with a tiny oven mitt protecting her little hand pulls out an empty pan. The fact that it is empty doesn't matter to her because she's pretending and the cake is fresh from her imagination.

As I watch this scene play out I know what role I will be asked to play…I am the cake taster. I sit at her tiny princess table, my knees high in the air, waiting for her latest creation. I know whatever she brings me will taste delicious. She is a culinary master. Many would expect nothing less from my little girl. She has been toddling around our kitchen for four years watching me bake pies, cakes, and cookies. As she walks towards me an excited smile spreads across her angelic face. This must be a really special cake.

"Here mommy," she says as she slices a piece of cake for me, "it's chocolate." (her favorite)

She watches as I pick up my pink fork and dig in, waiting for my verdict.

"Mmmmm! It's so moist and yummy! This is your best cake yet!"

Her smile reaches her eyes, making them sparkle, as she quickly turns and skips back to her kitchen for another baking experiment.

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I loved making pretend cakes when I was younger, then Play-Doh cakes, and finally real cakes. Baking was an outlet for me and I was pretty decent at it. When I thought of having children, I dreamed this scene many times and it was pretty much how I saw my life as a mother playing out. I would play with my daughter. Eat her imaginary cakes. Teach her to bake real ones one day. Oooo and Ahhh over her creations and help her figure out what went wrong because sometimes baking does go awry (my solution for a sunken cake is to turn it into a punch bowl cake).

Like baking life can also go awry.

I don't really play "with" Rae. A lot of times I end up playing "for" her and there's a big difference.

Playing "with" her includes rousing peek-a-boo sessions, blowing bubbles towards her so she can try to pop them with her shaky hands, sitting at the piano while we both tickle the ivories, clapping her hands to silly songs, or sitting her monkey "Mo-Mo" on my head and pretend to sneeze making him fly off and hit her (she thinks this is a hilarious…I have videos to prove it). There are other things too like reading books, complete with silly voices and sounds, and going over flash cards on her iPad. From time to time she will lead the activity like dropping her shapes in a bucket, pushing the handle on her gum ball machine (she really loves that toy), or scooting on her butt to reach a toy. But there are times when I am playing "for" her.

If the activity requires tapping into ones imagination and acting out what you think up then it is MY imagination, not HERS. She doesn't have an effective way of letting me know what she is thinking. I might pick up her doll and pretend that it is dancing a reel with Mo-Mo the monkey, but maybe she wants the doll to be a doctor and healing Mo-Mo the way Doc McStuffins fixes Chilly and Stuffy on her favorite cartoon. I just have no way of knowing. I am playing "for" her at this point. It feels very different and I'm still trying to adapt.

There is no kitchenette nestled in the corner of our home. That wound still causes me a little twinge of pain when I'm in the toy section of any retail store. Most of the time I am okay with that, but around her birthday and Christmas it is more difficult.

Now I use my imagination to come up with ways to play "with" Rae, not just "for" her, and it takes a lot of out of the box thinking (and a lot of energy and shopping). We adapt toys, add suction cups, and create clamps. We buy, build, or sew things I see that might work. For example: The other day I found an artist board that would allow us to paint and color at home! I was so excited!! To paint or color with her requires me to grow a third (sometimes fourth) arm and this board would secure the paper and would be easy to prop up which would enable to me to assist Rae. I'm pretty sure Santa is going to slip the board along with some more fat crayons and markers (Crayola of course) under the tree this year. Shhhh…don't tell Rae.

Christmas Wish List 2013

Twice a year we are asked about what kind of gift Rae might like to receive and honestly sometimes we don't have a clue. She has tons of toys, some of which she loves, some she can't really play with, and others that she is actually scared of so we don't' really play with those. She has a closet full of clothes because I feel it is one of the few things I buy for her that doesn't cause me anxiety (unless it's shoes that particular purchase has reduced me to tears). Everything else just seems a bit expensive or too practical (I love giving useful gifts) to suggest as a gift.

So, here I sit trying to think of things that Rae may enjoy or need (you can also check out this list).

1. A Portable DVD Player. We are in the car or waiting in doctor's offices a lot. It would also be helpful for those mornings when she wakes up at 3am and the only way to keep her calm is with Little Einsteins or Doc McStuffins.

2. A Tablet C Clamp Mount: This is the most practical gift for Rae. It will attach to her wheelchair (or table) and hold her iPad so she can use it without knocking onto the ground (she did just this over the summer and we the glass shattered).

This would have totally prevented the damage below.

I taped the corner with painter's tape so we could safely
 use it until we could get a replacement.

3. Knee Socks!!! Any kind, any color (especially neutrals), and pattern. They work great under her AFO's and are a big pain in the butt to find. If I find them I snatch them up because she wears them almost year round and you can't find them easily in the summer. What makes this a difficult item to find is her foot size (6 to 7 toddler). Leg warmers are also awesome!

4. Books! Almost any story that has a rhythm to it similar to Dr. Seuss (but she isn't too fond of him just yet, I've tried, she gets antsy after a few pages). Another example of a great book for Rae is the Llama Llama series (we have them all). 

5. iTunes Gift Cards. I know everyone isn't really comfortable with giving gift cards (I don't really like giving them either), but sometimes this really is the most practical thing for Rae. She has an iPad for entertainment and we are working on finding a communication app for her (there are SO MANY!) until we can acquire a Tobii. Right now she watches her shows, plays with ability/age appropriate apps (but loves listening to me play Angry Birds & sometimes she helps), or goes over flashcards/vocabulary.

6. A Lava Lamp (purple or pink): We think she'll like watching the lava float up and down in the lamp and it might also be a good alternative for her semi-bright table lamp when she wakes at 3am.

7. A Non Slip Table Mat: This helps keeps her toys from sliding off of her trays which can be very frustrating for her. They come in circles or rectangles.

8. Movies/TV Show DVD's: This is the first year where we have noticed an increase in her engagement with movies. Last year I tried to watch Rudolph the Red-Nosed Reindeer with her and about 10 minutes in she was screaming and obviously over it (which broke my heart because it's one of my favorites). This year she stayed alert and engaged through the majority of the film. She didn't scream once (except when she was laughing). I was thrilled!! She also loves Daniel Tiger's Neighborhood, Little Einsteins, Doc McStuffins, Princess Sofia, The Muppets (especially Animal), and South Park/Family Guy (don't judge…she likes strange sounds and physical comedy). She already owns some of these so if you aren't sure just call me (family/close friends…I am not soliciting gifts from my readers).

9. Nothing. Seriously, you don't have to get her anything. If you see her give her a hug, tell her hello, and smile. If you have some chocolate or cake, she'd love to help you eat it (and maybe a nip of your finger). If you only know her through this blog that is enough for us because we're about raising awareness of Rett Syndrome and Hypotonia and you are a part of that effort.

We have been very fortunate and blessed (which doesn't mean we don't struggle) to have our needs meet beyond the minimum. We have great friends willing to pitch in and help us raise funds and build a ramp for Rae (and donate towards research too). We have a roof over our heads and food in our pantry. Rae is relatively healthy and extremely happy. She doesn't want for much and that's a wonderful thing.

I hope you all have a Merry Christmas this year!

That's Almost Done…What's Next???

Ok. Now that the ramp is almost complete (we still need to build the roof, add new gutters, install railing, and stain it), what do we need to do next?!?!

Well, we have a few GIANT holes in our fence which makes our home a tad to visible for our taste. That should be our next big to do we need to check off our list. We can all agree with that decision.

But wait, you're forgetting that Rae is getting heavier and your back isn't getting younger so you may want to consider throwing all your financial efforts into getting that wheelchair accessible van. It doesn't have to be new (to the tune of $45K to $65K.). A used one with low mileage would be fine ($20K might get you a 2004). Besides you're only going to need one temporarily…four maybe five years tops because honey that girl is going to walk! Very true, I guess that's the next thing we should tackle.

*Tsk, Tsk, Tsk*

Has it totally slipped your mind that you have a teeny tiny bathroom door that is becoming harder to maneuver her (over 3 ft body) through after bath time, not to mention the strain on your back hefting her in and out of the tub when she's all slippery? Seriously, you guys need to work on your bathroom (which means removing the current walk-in closet, building a new non-walk-in closet, relocating the door, and replacing the flooring…carpet or hardwood/laminate???) and get it ready because unlike the (hopeful) brief use you'll get out of the van, the bathroom is a forever solution and if done properly will add some value to your home. It would be a relief to have this one off your plate.

You have lost your mind! She needs a proper bed! Are you daft woman?!? The girl can't sleep in a crib forever and it would be so much easier to change her diaper and get her ready for school if you could sit on the bed while doing so. Don't forget the added bonus of being able to lay down with her when she is having a rough night which happens quite often. This is the obvious choice…DUH!

Not so fast...

What about the living room? When are you going to tackle the seating issues in there? Do you want to build a raised platform or buy her a recliner? She can't just sit on the floor forever you know! Of course she can't, but you're forgetting that you are trying to acquire a stander and that will give you another way to position her in the living room and when she isn't in her equipment she can sit on the couch. But she likes to lay on the floor! She doesn't always want to sit up so it would make more sense to build a platform. It would be so much easier to pick her up. Ok…decision made.

Did your brain go on vacation?!? What about the Tobii?? Hello!!! You already started working on that and it is going to take some serious moolah to make happen. Don't you want to give Rae a chance to learn how to tell you that her tummy hurts or that she's hungry? Surely you want her to be able to say, "I love you." Giving her a way to communicate with the world, shouldn't that be your primary focus? Alright, we're going to focus our efforts on obtaining a Tobii for Rae.

You need to simmer down now…

We're still waiting to hear from Boston about that clinical trial which would REQUIRE you to travel to Boston. Maybe waiting to hear from them before making any decision would be best. Don't forget about the Natural History Study that you said you would like to participate in is in it's final year and those trips are going to cost some bucks too.

Hello, McFly?!? What about being prepared for a rainy day? Isn't that something you should be concerned with too? You have plenty of rainy days as it is and you know that probably isn't going to get any better so you might want to try to squirrel away some cash for an emergency.

AARRRGGGGHHHHH!!!!!!!!!!

I am losing my mind! Everyday these various projects plaque me to no end. What's worse is that these are just some of the bigger ones! I have dozens of little ones that nip at my heals as well and it is enough to drive anyone mad (both the lunatic and Hulk versions, "Candi SMASH!!!"). By the way, my name is Candice. I'm done writing under another name. Most of you know who I am and some of my newer friends get a bit confused by my pseudonym.

I can't seem to get a grip on where to focus my efforts next. Technically, I don't NEED to make this decision right now, but having some sort of "plan" makes me feel more secure. On the flip side, I have also learned the very cruel lesson that having a "plan" doesn't mean it will unfold the way you'd like. I fancy myself a contortionist. But, in actuality, I'm not as flexible as I'd like people to believe and what little flexibility I have left is quickly turning into something akin to crippling arthritis. I am becoming frozen. Afraid to leap (more like take a baby step). Terrified of making the wrong decision and using the finite resources we have at our disposal in on the wrong "to-do."

This makes living in my own headspace very cramped. As much as I believe I don't want to cross a bridge when we get to it…I just can't. I keep mulling these "to-do's" around over and over to the point I can't really enjoy the goals and objectives we've already conquered. I'm already thinking about the next item on the agenda and how to make it happen. It's a very frustrating way to live. I can't keep this mental monster in check at all times, but I try.