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!

The Best Christmas Gift Ever!

I wasn't really looking forward to Christmas this year. In fact I was dreading it. Over the last twelve months we have experienced a lot of heartache (family passing, Rae's medical, etc...) and my rose colored glasses were completely demolished beyond repair. I have been battling depression on and off for most of this year. The holidays just weren't bright and cheery for me (and most of our immediate family). I clung to my memories, sought comfort in family and friends, had a few fights (a sick form of therapy for me), and desperately tried to fill the voids in my heart. But the voids just kept deepening and I just kept going through the motions. Sometimes that is the only thing I can do.

I was fully aware that this Christmas with Rae wasn't going to live up to what I dreamed of this time last year when my rose colored glasses were whole. There wasn't going to be a tiny gourmet kitchenette under the tree or a classic pink pedal car. She probably wasn't going to tear into the presents, wildly tossing pieces of holiday paper into the air. I started bracing myself for what I felt was inevitable...disappointment. I feared I (and my husband) would be disappointed. Not in our daughter, but in yet another year of absent "first" moments.

I am happy to say that I was wrong!

I think I can, I think I can...the corner ended up in her mouth.

Out of all the gifts that we were given this year, our favorite wasn't anything anyone could purchase in a store or make with their own two hands. It was something that only Rae could give us...a first moment. A moment where we could see a spark of interest beyond, "Can I get that to my mouth and chew on it?" (trust me she did plenty of that too) She actually wanted to tear into the paper, pull tissue from bags, and play with her toys & the paper! Every movement was made with intent and for the most part on her own...I didn't have to MAKE her do it! She did it for herself (full disclosure...I did have to make the initial tears, but still...AWESOME!).

Playing with her new piano!
Thanks Munkle & Family!

Every year Mimi buys Rae a new baby doll.
Meet her "Sitting Pretty Cabbage Patch Kid.

Howdy ya'll!

Later on that afternoon, she even tried to play with another toddler when he was rolling his ball around.

You go first...

Now it's my turn!

By the end of the day she was all tuckered out (and so were we).

She refused to take an afternoon nap and passed out just around 8pm.

It wasn't quite the chaos I had envisioned a year ago, but it was still more than I anticipated when I woke that morning. It was the best gift I could have received and helped fill some of that void.

Crafts: Sensory Bean Bags

Months ago I thought, "Hey, you should make some sensory bean bags for Rae!" This was after I searched online and saw what other companies wanted for textured bean bags ($18 - $30...yikes!) So, with my Mom in tow, I went out and gathered different textures, bought lentils, and then....nothing. Zip. Zilch. Nada. The materials just sat on my sewing table in their JoAnn bag waiting for me to get off my butt and make Rae's bean bags.

Time ticked by and I made a few pathetic excuses as to why I hadn't started the project (sometimes it is fear of messing up...that stuff cost money). Christmas started getting closer and I knew I wanted to do something for Rae's PT and OT. These bags would be perfect and I had plenty of material. So, this week I got down to business and made the sensory bean bags (it only took about a little over an hour for one set). I have other textures that I plan on adding to the set.

The red one is really soft and furry, the beige one is rough (burlap), the blue one is smooth like suede, and the yellow one is vinyl (bent a needle making the first one).

Helping Anna open her present. 

Oooooo, tissue paper!

Surprise!

So soft...

I'm glad I finally made them because the look on her PT and OT's faces when they

received them was priceless.

My Letter to Santa

Dear Santa,

I know I haven't written to you in many years, but I never truly stopped believing in the magic you bring this time of year. Now that I have a daughter (Rae) of my own, I look forward to helping her leave you cookies and milk on Christmas Eve and waking her up to the gifts you leave under our tree. I have a few simples items on my Christmas list...really the items are for Rae, not me. They may not seem like a lot of fun like the toys you usually bring, but they will help her grow and develop in the coming year (not to mention some of them will also help her during therapy). These are just a few suggestions and I know you can't bring them all, but even one of these items could be a BIG help.

To make it easier, I made a picture list:

A corner chair with table top.

If you know any local Elves that can help make this that would be great!

3 or 4 Sensory brushes.

Foam Alphabet Floor Squares (5/8" thick)

LeapFrog Magnetic Farm Animal Set

Melissa and Doug Puzzles w/large knobs.

Poppin' Pal's

A Peanut Ball (small).

I don't ask for any material things for myself because, while I may "want" a Nook or new handbag, I don't "need" anything. What I am asking (and praying) for is more patience with Rae during therapy and mealtimes, better understanding of her needs, doctors that will tell me the truth even if they know it hurts, insurance companies and medical billing departments that will do everything they can to help lighten our financial obligation of Rae's medical bills,  and continued progress. Oh and if it isn't too much to ask for...I'd really like some answers.

Sincerely,

Rae's Mom

P.S. I hope you like Snickerdoodles!