Tuesday, December 17, 2013

Road Safety: What If You're Not Conscious?

Every parent can relate to the "what if" dialogue that runs through my mind. We shoo it away not wanting to think ill or dwell on all the things that could go wrong and just hope that the worst won't happen to us. We can't imagine not having our little ones with us or heaven forbid us not being here for them. It is a universal fear.

There are things we do that offer us some peace of mind and if you haven't done any of these (which honestly we haven't and need to) then maybe it's time to be proactive and silence some of those "what ifs" that plague us. Some of the BIGGER things are a bit more daunting (like setting up a will, trust, or designating guardians), but maybe we should start off with something smaller and a bit less intimidating.

One of the things that I fear the most is being unconscious after a car accident (if you knew my track record you'd totally understand why). If I do not have all of my faculties (or if I'm knocked out), I will not be able tell the EMT's about my daughter needs or her medical conditions. Who is going to tell them all the things they need to know about Rae? We always assume we'll be fine or they'll be able to contact the right person, but that's not always the case. There are a few simple solutions to this anxiety inducing fear.

Here are a few helpful products and ideas I've found:

1. An informational sticker for your vehicle: You can find this one on Amazon.com and it is $2.89 per sticker (plus $1.50 shipping…I'm sure price is subject to change). I have one on each side of our van. It gives me some peace of mind at a low cost.

This one is made by Magnet America.

2. Tape emergency contact information (and any other pertinent info) onto your child's car seat. I have seen this on Pinterest and still haven't made one (it's so simple, why have I not done this yet?!?). You can find a list of information to include over at Don't Pat the Belly and remember to look at your carseat to determine the best place to put your sticker (basically make sure it will fit). Other than the cost of ink, paper, and tape this is almost free!

Image from www.dontpatthebelly.com.
3. There's an app for that! Did you know there is an app you can download call LostFound - Emergency Contact Banner Maker by Doubleforte. The app will allow you to create an image with emergency contact information on it for your wallpaper lock screen. This became more of a necessity when Apple added the passcode lock with their last update. The app is .99 cents! A simple and inexpensive way for emergency responders to know who to contact when you aren't able to tell them. I have the app on my phone and Rae's iPad. The iPad app will allow you to enter more information than the iPhone app so I was able to add Rae's diagnoses (critical ones) and her allergy to penicillin.

Screenshot from iTunes Store.
4. Medical Alert Jewelry: Lauren's Hope offers a large variety of customizable jewelry for everyone (men, women, girls, boys, and pets) that will inform people about your medical needs in the event of an emergency. They are stylish, fun, and functional! We haven't purchased one for Rae yet, but will in the near future. Prices vary depending on the type of bracelet and number of lines.
Purple Lipgloss Medical ID Bracelet by Lauren's Hope.

5. Car Escape Hammer: If you are conscious, but can't get your seatbelt off or your window down you may need one of these handy little hammers (they even have a keychain version). The prices vary (LifeHammer is currently $14.80 on Amazon.com), but you can easily purchase one for under $10 and they are sold at many major retailers. My friend used to worry about getting in an accident,  going off a bridge, and getting trapped in the car with her kids. Then my dad gave her one of these and it gave her a little piece of mind. I have one of these tucked in the side pocket of my door. I know this veers off topic just a tad, but I feel these hammers should be in every vehicle on the road.



I have a few more ideas that may be helpful like small luggage tags for her backpack or an insert that stays in our glovebox with our registration and proof of insurance, but I have not done either of those things yet. This is something that I need to put at the top of my to do list. We are on the road more often than we used to be since Rae started school and my lack of preparedness is being to bother me.

My project for next week is to sit down and create an emergency medical information sheet. It will list Rae's diagnoses, her doctors, her allergies, our preferred hospital, a list of her current medications (dose and time given), her emergency contacts (Daddy, Mimi, and G-Boss), and anything else we feel is important for someone to know about her. I will also do one for myself, but it will be a much shorter list.

It's the holidays and that means people are traveling to see loved ones and friends. Take a couple of minutes to write out your emergency information and give yourself the gift of peace of mind. Be safe out there and make sure those that are there to help have the information they need to in order to help you or your little ones.

Monday, December 16, 2013

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.

************************************************************

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.

Friday, December 6, 2013

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!

Tuesday, December 3, 2013

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.

Tuesday, November 26, 2013

The Big To "Do" About Hair

I want the world to love my daughter. I want them to see her and know that she is loved. I want them to know she has value and is priceless. I want them to know that she is worth the time it takes to fix her hair, create a nest for her in a shopping cart, and pluck a flower so she can smell its fragrant bloom. She is worth all of that and more. Sometimes my need to make sure the world knows she is loved, valued, and worth the effort creates a power struggle between us.

This struggle usually rears its ugly head when I'm trying to tame her wavy, champagne, mane. I was not a child that enjoyed giving my dolly an "up-do" and I most certainly did NOT cut their hair…EVER!!! Just the mere mention of such a naughty action would make me anxious and, if pushed, I would cry for my mom to come back me up. Hair is not my thing. Then I had a daughter….

My little mohawk baby!!
When she was born the first thing I said was, "Aww, you have hair!" (yes, that was the first thing I noticed) I didn't want her to be a bald baby. I wanted to put headbands, flowers, and bows on top of her tiny tendrils of hair. I was not disappointed…she had hair…but it looked more like a mini mohawk for quite sometime. Add in a double crown/cowlick and there was no baby hair bow that could tame those locks. So I waited…

Christmas 2011, her curls were really starting to show.
I was sure they would straighten out.
By the time she was about 18 months, I had to start pulling her hair out of her face, but it was a struggle. She hated her hair being brushed. Her low tone and poor head control turned her into a bobble head doll and made "doing" her hair an olympic event (I often employed wrestling holds while "doing" her hair). We thought some of her behavior could be because she had some sensory processing issues, but since she is non-verbal we could never be sure. Most of the time she won the battles. If I could get the top part pulled back and in a clip in under a minute that was a real feat with minimal fuss. Anything more complex and I risked releasing the Kracken.

Oct 2012: The curls I thought would straighten out stayed.
Little did I know that I actually birthed Rapunzel! Her hair is ridiculous…gorgeous, but ridiculous! It is so long and wavy. I swear it has a mind of its own and goes every which way conceivable. When wet, the longest strands are below the top of her tiny butt. Rae has Farrah Fawcett hair! But she still hates having it brushed or pulled up. I started resorting to bribery, "Here Rae, have a bite of chocolate. Don't mind what I'm doing behind you. Just eat your chocolate and watch Little Einsteins." But usually she'd catch on and the Kracken was released…again.


(what a difference a year makes!)

Imagine my surprise when she allowed me to do her hair every day for the first two weeks of school (not the full two weeks, but close enough). I was stoked! I took pictures!  (disclaimer: I am not very adept at hair so these do's below made me quite proud of myself) I was on fire! Then it back fired and blew up in my face. We started battling again. I released the Kracken and proceeded to loose my mind. We had to have a cooling off period for about 10 minutes (7 of those were spent calming the Kracken). Our solution to these battles is to no longer fight over hair. If I get it up before school so be it. If not, they will take care of it when she arrives (they graciously offered). Works for me!


So what does her hair have to do with people loving her and placing value on her?

I feel that if I am not willing to invest the time to make her presentable (do her hair), show she is well cared for and loved greatly then the world will perceive that I place less value on her. I feel this would give them permission to view her as less than a "typical" child instead of who she is…a little girl (with a fierce lion mane and striking blue eyes). A little girl that thinks crying is amusing and physical comedy is deserving of belly laughs. A little girl that likes the color pink and loves watching Princess Sofia learn how to be a compassionate princess. A little girl that says more with one look than some children can actually say. A little girl that LOVES chocolate and hates her medicine. A little girl….period.

If you value someone they are worth the effort. If you love someone they are worth the extra hassle. Every day we have to overcome little (or big) battles like this one. Sometimes it is between the two of us. Sometimes it is between me and a third party. Sometimes I am battling myself (always a lose lose situation). I want the world to love my daughter. I want them to see her value. I want them to know she is worth it and she deserves every frustrating (and rewarding) moment that life gives us. Why? Because I love her and she IS worth it.


Friday, October 11, 2013

Big Changes Coming

The last couple of weeks we have been going through some pretty big changes and I have turned into a total wreck. Our schedule was pretty set for the last two years. PT on Monday, OT on Wednesday, ST on Thursday, and doctor appointments sprinkled in between. It became familiar and comfortable. I woke up every day knowing what was going on and when. Well....not anymore.

Rae and Anna (PT)
Firstly, Rae has been discharged from Early Intervention as of October 4th and we had to say goodbye to her therapists. I cried. Not a blubbering mess kind of cry. More like one that acknowledges that words can never properly express how much these women have come to mean to us...to Rae. Every word of encouragement. Every piece of transition advice. Every week they were here working with Rae. Rain or shine. Good humor or screaming ball of fury. They became a part of her team and while we may not have always agreed (at least 95% of the time we did), we always kept Rae's best interest first and foremost. I will never forgot how they help shine a light into the darkness and walked with us into the unknown.

Rae and  Karen (OT)
Secondly, we had our very first IEP (Individualized Education Plan) meeting last week. I felt so uncertain about what we were walking into and have heard more horror stories than encouraging ones. Part of me was ready to go battle and the other part of me wanted to just sit back and observe....I could do neither. We have to participate in creating this plan...a legal contract actually. We worked with representative of our local school board to develop goals and determine which school offers the best program for Rae. I toured two schools, our "home" school (about 6 minutes from our house) and another one about 30 minutes away, before the meeting. After discussing the options over with dear dad, we decided we wanted to make the 30 minute commute, which required a special assignment and was dependent on the school accepting Rae. They did within two days!!!

Our first experience with an IEP meeting was smooth and effortless. I'm sure we will have to do some tweaking here and there over the school year, but right now we are pretty satisfied with the outcome. Rae will still receive all of her therapies, has reasonable goals, and will be enrolled at our first pick school. I'm already shopping online for manatee stuff (the school mascot) and found the cutest pair of socks!!!

These socks can be purchased at Manatee Gifts Galore.
Thirdly, we have a new specialist...a GI doctor. We went because Rae was having a rash of unexplained fevers and we wanted to check her aspiration (better? worse?) The concern was that it had gotten worse and we needed to go from "nectar" to "honey" (liquid thickness) and go back to pureed foods. I had already started making that transition just to be on the safe side. Towards the end of the appointment the doctor asked me if any other doctors have mentioned a G-tube. I wept. Right there. In her office. I could not pull it together fast enough. It is the first time I lost it like that in a doctors office (except when my own doctors mention thyroid cancer...luckily it wasn't cancer...just HUGE and now it's gone). The one thing Rae has been able to maintain and loves is eating. I felt like Rett was coming in to steal something else from my baby.

Yes, there are many pros and cons to a G-tube and we have to weigh them all against each other, but I'm not going to get into all of that just yet. This decision requires more tests (another modified barium swallow and an upper GI...completed this week) and more consultations with her doctors. We aren't jumping into the surgical room at this point. I'm still wrapping my mind around the words and what that means for all of us. In the end, whatever is in Rae's best interest will be the direction we go.

Lastly...



These last three years have just flown by and I know the years ahead will move just as quickly. We didn't have a big party...heck, we didn't even have a small party. It was just immediate family this year and we were able to include my brother and his family via Skype. Being able to share her birthday with them made it even more special.

One to Grow On

Did anyone else get birthday spankings? The kind where everyone lines up to playfully swat your behind and laugh at your protests and/or embarrassment. I can remember such occasions, but it stopped many, many years ago. I don't think anyone really liked this particular birthday celebration fun torture, but what I do like though is, "one to grow on." It's like a stinging promise that you'll get another year (and maybe your family/friends will get to give you a few more swats). While we didn't give Rae a birthday spanking this year (not ever gonna happen), we sure are praying for "one to grow on."

We kept her birthday celebration simple this year and only had family come to the house for dinner and cake. Rae tore though her presents (with a little assistance) and daddy helped her blow out her glittering pink #3 candle. Muncle and his family were able to join in the festivities via Skype which made the evening even more special. As usual, I took plenty of pictures...

For any birthday celebration you HAVE to have balloons!
Added bonus, Rae likes to use her hand to hit them (it counts as therapy...right?).





Talking with her Muncle and cousins.


See how happy she is talking to them!


Time to make a birthday wish!!!


Of course you have to have presents on your birthday!


It's Trolley!!!
(Daniel Tiger's Neighborhood)


It's Wall-E! Thank you Ms. Shana!


It had to pass the taste test.


A new winter coat from Aunt Nancy and a tooth fairy pillow!






Time for a check-up!


A new book for all those trips in the car!



She LOVED the cake, but wasn't so sure about the raspberry sherbet...at first!


Even Moo-Shu indulged her sweet tooth.


Tuesday, October 1, 2013

Rett Awareness Month

Today marks the beginning of Rett Syndrome Awareness Month. It is our first. One of the new milestone in our lives. Until this year, the month of October was reserved for breast cancer awareness (for me at least I know many groups use October for awareness) and pink everything. I would go to Panera's several times during the month for a deliciously sweet cherry pink ribbon bagel and maybe go on one of the many charity walks. I had no real connection to breast cancer outside of the fact that I am a woman, which honestly is enough, but this year it is different. VERY different. I now have a cause to truly rally around. Something so close to my heart that it has become a part of me body and soul. I can only imagine this is how others with a cause feel. But calling it a cause isn't really enough. It is more like a quest. A quest that will only end when a cure is found.

Here's some quick facts about Rett Syndrome from GP2C:

  • Debilitating neurological (movement) disorder that predominantly affects females.
  • Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old. 
  • Caused by a single gene mutation that leads to underproduction of an important brain protein.
  • The most severe form of autism.
  • The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
  • Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
  • As prevalent as Cystic Fibrosis, ALS and Huntington's.
  • Another little girl is born with Rett Syndrome every 90 minutes.
  • Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
There is hope! Researchers are diligently working towards finding a cure for Rett Syndrome and believe their work will further research for other syndromes and diseases like Autism, bipolar disorder, and Alzheimer's (to name a few). You can help by supporting a Rett family (really any family with a special needs family member). Here's how...


Think small. Yes, you read that right...small. The BIG stuff can be intimidating, so just think of small things you, your family, your church, your school, your company (just about anyone or any organization) can do. Here are a few ideas from the 20 Simple Things List:
  • Simply smile and say hello. I love it when people smile at me and speak to Rae (especially kids)!
  • Help a family out by offering to assist them with yard work, cleaning their house, or making them dinner. These things often get tossed onto the back burner.
  • Invite a family with a special needs child to a function. Offer to help with the child so the parents can talk and enjoy their time. Many families do not get out much because it can be very difficult to manage all by themselves.
  • Plant a Garden of Hope: In exchange for a $1 donation you can sign your name on a beautiful flower. 
  • Dress Up 2 Cure: Who doesn't LOVE playing dress up??? Students can dress silly for one day and bring spare change to donate towards a cure for Rett Syndrome.
  • Rockin' for Rett: It's a fun time for all! Crank up the music featuring local bands, local businesses, and fun, Fun, FUN!
  • 31 Tweets/Posts for Rett Syndrome. Go to the GP2C blog for samples of tweets and postings to help spread awareness.
  • Hang a GP2C banner up. (to purchase click here
  • Rock a GP2C shirt! You'd be surprised how many people ask me about Rett when they see my shirt. (to look at merchandise and purchase click here)
Aunt J rocking her GP2C shirt at school!

Raising awareness is that easy!

Thursday, September 26, 2013

The "Right" Words

After I wrote the previous post, "Getting It," I stumbled across the following poem on Pinterest. I don't know the title of this piece and I have no idea who J. Hendel is, but he/she totally nailed it! Often times people struggle to find the "right" words when friends/family are going through a tough time (for lack of better phrasing). Sometimes there are no "right" words and the best thing one can say and do is summed up by the last stanza. I'm not going to analyze this for you or explain why it touched my heart (you're smart people, I'm pretty sure you can figure it out).


*This poem was originally posted by Hollye Jacobs from The Silver Pen in a posting titled, "Caring for Children When a Parent Dies" (it took some digging to find the original post since direct links to it are blocked).


Getting "IT"

I have been struggling with writing this post. The more I thought about it the more I felt I needed HAD to write this post. When I began this blog it became an outlet for me to work out some pretty intense emotions (anger, fear, guilt, sorrow...to name a few) and share with others that find themselves in a similar situation to our own. I once told a friend that I didn't write for my friends, I wrote for myself and for those similar to me. That being said, by not writing about "getting it" I was refusing to allow myself to deal with it in the one way I have found to be helpful. Let the chips fall where they may...

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We've all heard this phrase at least once in our lifetime, "Don't judge a man until you have walked a mile in his shoes." For me, it speaks to more than just judgement. It also speaks to how well someone may understand another persons circumstances, their day to day life, their ups, their downs, and everything in between. When I was younger, I didn't give this concept much thought because everyone is dealing with their own big bag of crazy (otherwise known as life) and we all stress, worry, grieve, etc... It's just different types of stress, but stress is still stress regardless of the cause. Right???

Wrong!

I was very, very wrong. I can admit that now because I find myself in the middle of a particularly challenging life at times. Stress is high. Rewards are few and far between. Looking back on my twenty something self I am appalled at how arrogant, offensive, and insensitive I was to at least one of my closest friends (I'm sure there were others...give me a break I was young and a bit stupid and/or self absorbed). I insisted that our stress, our worries, and our lives were the same (they so were not even close to similar) that I "got it."

I was single, in college, living with my parents, and my paycheck was for whatever I wanted. She was a single mom, living paycheck to paycheck, no assistance from her ex, and responsible for another persons well being. She is someone I have always admired for her strength, her sacrifices, and her love of life/family/friends (even if she can be a bit dramatic...pot calling kettle black). I hurt her. Worse yet...I emotionally invalidated her. My insistence that we were the same and that her life was no more stressful than mine invalidated her. I was wrong. So very very wrong.

I am sorry.

When we were together in her home I was given a brief glimpse into her life. I played honorary aunt for a few hours and we laughed or cried while drinking a couple of beers. Then I left. I waved goodbye. Her door closed. I slid into my truck (a black Chevy S-10 Xtreme...man I miss that truck) and I went home. I drove off into the night without another thought to her life as a single mom and all the hurdles that came with the job (in all fairness that isn't entirely true I thought about her daily). I thought I understood her life because I was peeping in her window and surely I was empathetic enough to "get it." But I could turn it off. I could close the door and walk away. She could not.

There are many different ways a person can invalidate someone else's feelings. The "Minimizer" tells you it's no big deal and everything is fine (someone out there has it worse). The "Denier" will insist that nothing is wrong, it is all in your head and/or you don't really feel that way. The "Fixer" doesn't really listen to what is being said because they are too busy trying to figure out a way to "fix" it for you (sometimes it can't be "fixed" and all your want is someone to listen). It doesn't take much to make someone feel as though their feelings don't matter...heck I do it without even realizing it at times...we all do. But for the purpose of this post the invalidation I am struggling with is the "Relater"(BTW: I totally made that one up). The "relater" attempts to relate your life to someone else or their own which may over simplify the situation or the feelings you have regarding the situation.

So, what does that have to do with my life now? Well, sometimes well intentioned people believe they "get it" and try their best to relate to me/us. They adamant that they understand everything our life entails. I do not agree. It has become a huge chasm that needs to be bridged, but neither party involved will acquiesce. I have agreed that they probably "get" some aspects of our life, but that is not enough. It feels like it has to be all or nothing. They are hurt and offended because of my refusal to say they "get it" in its entirety. I feel emotionally invalidated.

In case a few of you may be shaking your heads, thinking I am being dramatic, let me explain why I feel invalidated. I need safe places to vent. To be emotionally distraught. To allow myself to sob uncontrollably. To rage at Rett Syndrome and all that it has stolen from my daughter, from us, and from everyone that loves her. I do not do this with everyone. I can't. It can get dark and ugly. At times I feel ashamed of my own feelings. I doubt myself as Rae's mom. I fear a future of loneliness (remember we're a May December romance). When someone offers to be a dumping ground for all my emotional trash it is with great hesitation that I take them up on their offer. They don't need to carry my baggage because I'm pretty confident they have their own. However, when pushed enough I can't prevent it from spewing out all over whoever I'm speaking with at the moment. That is what happened one afternoon (and at other times). Then the invalidation began...

Rae will be three in October. On her birthday, Early Intervention stops and she will be starting school soon. She has never spent more than three days and two nights from us (and that was with her Mimi and G-Boss). Her medical care becomes increasingly complex as she gets older. What started as therapy once a week turned into three therapy sessions, more specialists than I can count, one machine for respiratory therapy, multiple pieces of medical equipment, three medications twice a day, and feeding complications due to aspiration.

Entrusting Rae to complete (qualified) strangers makes me anxious. I finally start to express this and I hear, "You're just feeling like every mom that has to leave her child in daycare and return to work." Um...not really...thanks. I once confessed that for weeks after putting Rae to bed I mentally ask her to please wake up in the morning. "Every mother feels that way." Maybe...hmm...maybe not so much. I expressed the fear of having to confront the words "mentally retarded" on Rae's evaluations. "Well, there are different levels and it doesn't mean what you think." I know that, but I still don't want to see it in black and white on official documents. It still hurts. I don't think of her that way. I'm pretty sure if the shoe were on the other foot they might not be so comfortable with the term either. By the end of our exchange we were just talking circles and neither of us were willing to back down. I felt like the safe dumping ground I was promised was no longer safe (I'm sure she felt the same, but I didn't offer a safe place).

Some people need you to know they can "relate" to you and your life. That either their own home life is, in some way, similar or their experience is more than enough to make them believe they "get it." That isn't the worst thing in the world. Having someone that really "gets" your life is one of the most satisfying, supportive, rejuvinating relationships a parent with a special needs child can have (or a widow/widower, a single mom, an alcoholic, anyone really...you get my point). But that life isn't one that just anyone can fully understand unless it has totally consumed almost every fiber of their being. The further away you are from ground zero the less likely it is that you'll fully "get it." Of course, this is my own opinion and others may have different feelings from my own.

Most days I feel rather drained (physically, mentally, emotionally, spiritually) from what I absolutely HAVE to handle and keeping myself glued together that I don't have the emotional strength to deal with much else. This is one reason relationships suffer when you're traveling down such a different path than others. I don't really know where to go from this point... Some would advocate walking away from the realtionship, but that isn't really my style and not an option. Others would just limit communication or interactions with the person, but again that is not really an option. I'd like to figure out a way to mend this bridge, but I am not sure how to find a resolution that will make all parties happy. I guess I'll just have to wait and see where those chips land.

Thursday, September 19, 2013

Thrown on the Wheel

My world is just one giant wheel spinning around and around. Here I sit, in the center of my world waiting, watching as things spin by me. Sometimes, I spin so fast that I can't even remember the days events. At other times, the wheel spins so slowly that it feels like it will never end. I know at some point I will leave my world for another where I will be transformed, but until that time I try my best to wait patiently because the potter is not finished with me yet.

Rae has been sick lately...for a couple of months actually. Nothing serious enough to drag her into the emergency room, but we have been in and out of the doctor's office weekly. Her temperature kept fluctuating up and down (a high of 101.7), she developed a really nasty cough (more choking than cough), her appetite dropped (she LOVES to eat), and her sleeping patterns shifted (6pm to 3am...not my idea of fun). After three x-rays, multiple blood draws for lab work, and two appointments with an infectious disease specialist we found out that everything is "normal" (honestly that is such a relief). Her body is not showing any signs of preparing for battle. We have ruled out most of the usual suspects and the last one to check is her swallowing issues (we think she is now aspirating food not just liquid). We have preemptively stopped feeding her most solids and increased the thickness of  her liquids from "nectar" to "honey."

To say I was at my whits end at times during the last two months is an understatement. I was bedraggled, exhausted, and perplexed because everything kept coming back "normal." Feeling completely helpless to do anything that could help her was frustrating. Another coughing/choking fit would take control of her little body and as I cradled Rae in my arms, trying my best to soothe her, I could hear my inner voice singing,
"Have Thine own way, Lord! Have Thine own way! Thou are the Potter, I am the clay. Mold me and make me after Thy will, while I am waiting yielded and still." 
These lyrics have become a source of comfort for me. I struggle with the "why's" of Rae's Rett Syndrome. Why us? Why her? Why Rett? Why? Why?? Why??? I also struggle with my own confidence in being her mother and being everything she needs me to be for her. Will I be strong enough? Will I be patient enough? Will I be assertive enough as her advocate? The questions are endless. This simple hymnal reminds me that I am as much a work in progress as Rae is and it takes time. Singing this to myself helps me not loose it when she's in the middle of a 20 minute tantrum, spitting her medicine out, refusing to drink a bottle, or coughing uncontrollably.
"Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand." ~ Isaiah 64:8 (NIV)
God is the potter. I am a ball of clay. My life began when I was thrown onto the wheel and painstakingly shaped and reshaped by His hands. I'd like to think I am no longer on the wheel, that I am waiting to be fired, but He is not done with me. At best, I am sitting on a shelf, drying, waiting for the final touches before being placed in the kiln. However, I believe I am still spinning. In the short time that Rae has been with us I have already felt myself changing. My patience, my compassion, and my faith (to name a few things) have grown. Rae has become an extension of the Potter...a tool one could say...reshaping how I interact with her and the world we in which we live. Am I perfect at being her mother....nope, not at all. Am I trying the best I can most times...absolutely.

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Have Thine Own Way, Lord
Written by: Adelaide A. Pollard

  1. Have Thine own way, Lord! Have Thine own way!
    Thou art the Potter, I am the clay.
    Mold me and make me after Thy will,
    While I am waiting, yielded and still.
  2. Have Thine own way, Lord! Have Thine own way!
    Search me and try me, Master, today!
    Whiter than snow, Lord, wash me just now,
    As in Thy presence humbly I bow.
  3. Have Thine own way, Lord! Have Thine own way!
    Wounded and weary, help me, I pray!
    Power, all power, surely is Thine!
    Touch me and heal me, Savior divine.
  4. Have Thine own way, Lord! Have Thine own way!
    Hold o’er my being absolute sway!
    Fill with Thy Spirit till all shall see
    Christ only, always, living in me.



Monday, September 16, 2013

Mini Mozart

Things have been so crazy lately that I keep forgetting to share some of the awesome stuff that happens at our home. Time to play catch up...

Rae was giving a piano by her honorary grandma Robin. We were elated! She loves playing the piano. In fact we have two iPad apps, one toy piano that teaches colors/numbers, and one mini pink upright piano already. Being given a full size upright piano was the cherry on top of the sundae. Rae is able to sit in her wheelchair and push the ivory keys till her hearts content.

This is especially important for a couple of reasons:

1. She is completely engaged. When she is happy her touch is soft and gentle. When she is upset she bangs on them with all her might while sputtering baby curse words.

2. It motivates her to use her hands! This is critical for Rett girls because many lose purposeful use of their hands. As long as she will reach out to tickle those ivories then I'm going to encourage and enable her to do so.

3. Rae loves making music!

video

Saturday, September 14, 2013

Tears and Giggles

As I sat anxiously in the hospital wheelchair, Rae in front of me soundly sleeping safely buckled into her car seat, waiting for dad to drive up to the door I gained some interesting insight into our little girl. She does not concern herself with the wails and sobs of others. The peaceful quiet in the hospital foyer was immediately disrupted when the elevators doors opened and the screeching cries of another newborn heading home shattered the silence. I turned to see if Rae was disturbed by this intruder...she was not. In fact, she slept through his high pitched wailing and I swear she let out an exsacerbated sigh (similar to the ones her father often makes). I jokingly told my mother that my child had no empathy.

I did not give it much thought after the sliding doors shut behind us, effectively ending his serenade, but her can't be bothered by tears attitude morphed into one that finds the sounds of sorrow to be amusing. The first time she laughed at my tears it made me cry even harder, which of course made her laugh more. Over and over she would crack grins and giggles at the sound of someone's sorrow. It also unlocked a tool for us to whip out whenever she is crying...and it works! During the middle of a tantrum, complete with crocodile tears, I will pretend to cry...heaving my shoulders up and down while wailing. She laughs. Sometimes it is a cry/laugh combo, but she laughs and I'll take it because it is enough to distract her from whatever she was pitching a fit over.

What is funnier is when she laughs at cartoons and sitcoms. Sometimes it is very subtle and other times it is a full blown belly laugh. My kid has very little empathy for others and it cracks me up. I have started telling her that the person she is laughing at is hurt, upset, or might need help, but I still can't help laughing at her wicked sense of humor.

video

Rae listening to Meg on Family Guy cry.