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?)

5 Things I'm Thankful For

We set aside one day a year to reflect on all the blessings that have been bestowed on us, the things we are thankful for, and to subject a family member or friend's home to mass chaos (hosting can be a joy and a major stressor). I don't often like to participate in all the "thankful" postings on social media (they sometimes seem a tad repetitive), but I do have a few things on my list...

A very small fraction of our family.

1. I'm thankful for my family and friends (an obvious choice). They have stood beside me through all my emotional breakdowns, irrational logic, and bi-monthly (*cough-cough*...bi-weekly) pity parties (no one likes being invited to those). They have celebrated all those little inchstones with the same exuberant joy one would express at winning the lottery (maybe not that much, but it's close).  They have helped me over so many bumps, hurdles, and pitfalls to numerous to list. Most importantly, they haven't made me feel like I'm not doing enough for Rae, they don't think I'm crazy (maybe just a little) when I suspect something else may be wrong, they've willingly been my shields when strangers prod, they remind me that I also need "me time," and they love, Love, LOVE our daughter for who she is and not who she isn't.

Rae and Karen, her Occupational Therapist,
during her session this week.

2. I'm thankful for all the doctors, nurses, lab techs, therapist, case workers, insurance reps (especially Ms. Timmons at BCBS...she called me almost every day to keep me posted about the status of a particular concern), and everyone in between who have helped us maneuver through this Hypotonic maze, offered us hope & encouragement,  and (on numerous occasions) graciously taken the extra 10 minutes (okay...20 minutes...running over into someone else's appointment...sorry) patiently going over information they've already explained two or three times before and listening to me go on and on about our long list of concerns. They never once made me feel like I was wasting their time!

3. I'm thankful for my health (another obvious choice). I'm not in the best shape physically, but I am healthy enough to care for Rae (for now...knock on wood). I had a pretty big health scare this summer and ended up having my thyroid removed it was two and a half times average size, was starting to choke me, and stretched my vocal chords to the point they were about to break (my vocal chords are still not fully healed). Thankfully, it was not cancerous. While at times I feel the strain/pain (physically), I'm still able to get up and down from the floor after playtime or therapy, I'm able to lift her in and out of her crib or the tub, and I can carry her (this is becoming more difficult and my back is starting to file complaints). Under normal circumstances, I'd probably blow off my own health issues (and I still do from time to time), but I have to take it more seriously now. Rae needs me and I need to be here for her.

Rae with Anna, her physical therapist,
during this weeks session.

4. I'm thankful for my online support group (Hypotonia Parents Connection on Facebook). You ladies (and men) are awesome! You just "get it." You don't judge anyone when they get angry and vert or share worries and fears. You offer such wonderful assistance when researching testing/therapy/toy options. You laugh, rejoice, and cry with each member. It's bittersweet that the number of members keeps rising. I'm thankful for each of you...you help me stay sane!

5. I'm thankful for the inchstones. Those tiny developmental drops of rain that sustain us through the periods of draught. Two weeks ago, I was in despair. We hadn't seen much progress for weeks and I was at a loss. Nothing seemed to work and everything seemed to be off the rails again. It's not a good place to visit, let alone feel like you've been stranded there. Fast forward to this week and it was like a fog had been lifted! We have some big (positive) changes and my cup was once again overflowing with joy.

I could continue to list all the things I'm thankful for (my growing faith in God, the roof over our heads and food in our pantry, etc...), but that would be a never ending list. This is my short list. The ones I remind myself of almost every day.

Sun Beams: Doing "More": Take 2

After over a year of trying to get Rae to say "more," I am thrilled to share that it has finally happened! She can now ask for "more" during a meal and last night tears gathered in my eyes as she repeatedly tapped her talker, (an iPad).

Rae's iPad, Fisher-Price case, and Apple case.

I have to admit, I am a little surprised how easily she understands what we are asking of her and is responding appropriately (I also feel like Pavlov with his dogs...tap the talker, get a bite). Rae is tapping the "more" button and then resting her hand to the side of her talker, not just laying her hand over the button. She takes pauses between bites allowing time to chew before tapping "more" again (except when Daddy was feeing her a Zinger, then he had to remove the talker to keep her from repeatedly banging "more"). In addition to tapping the "more" button on her talker, she also looks to the spoon or plate of food after hitting "more." This tells me that she is connecting the action (tapping) with the result (food). I don't think there are any words I can use to adequately express the relief I feel at knowing her cognitive skills are working (I've been worried about that for a few months now). This is BIG (encouraging) news in our home!

I made a quick video of Rae using her talker while Daddy was feeding her dinner:

This was all made possible by our friends and family. For Rae's birthday (read about Rae's "Apple" party here), we asked them to consider a monetary gift in lieu of toys or clothes to help us purchase an iPad and an AAC (Augmentative & Alternative Communication*) app. We are so thankful for the gifts Rae received and, as a result of their generosity, Rae can now ask us for "more." We are looking forward to teaching her more words so she can have a voice of her own...a truly priceless gift.

Thank you all so, So, SO MUCH!

*We are currently using the So Much 2 Say app because it allows us the option of using just one card at a time and we can make cards specific to her everyday surroundings & items. As her ability with the talker continues to progress, we will be able to offer more cards.

FundRazr: Rae's Medical Fund

This posting is about the account I set up through FundRazr. A link to Rae's account is below. If you're a regular reader then you're already familiar with our story. If you're new, here's a quick summary of events and I hope you return.

Rae's Medical Fund:

In our home, we don't look for developmental milestones. We look for the inches, like the first time our daughter, Rae, held her own bottle at 14 months. Now at 22 months, Rae looks like a typical toddler on the outside, but she doesn't toddle or even crawl. She does not "baby talk" and is currently not able to communicate using sign language (read about it here or here), but she does give a pretty good "High-5" (watch the video here). 

Here's our story...

Our medical journey began when she about five months and we were told Rae had Hypotonia (a fancy word for low muscle tone). After that, our world became a blur of doctor appointments and testing. By August 2011, she was diagnosed with Scoliosis, likely caused by her Hypotonia. In September, Rae had her first MRI with "normal" results and then proceeded with a Nerve Conduction Test...also "normal." She was accepted into an intervention program and started receiving physical therapy once a week and we were hopeful, but then the word wheelchair came up and we knew there was not going to be a "quick fix."

In November, we had lab work completed to determine if Spinal Muscular Atrophy was the culprit of all Rae's medical concerns (which came with a whopping bill...still unpaid). Then the "tremors" started concerning us and we ended up back at the hospital for an EEG. Diagnosis...Epilepsy. Now it was time to start the grueling process of figuring out which medication or combo of medications would stop the seizures. This also meant we were going in for a second MRI. We then went to Genetics (read about it here) to see if there was something they could find and so far (thankfully) everything is "normal" and sometimes that can be a bittersweet result. We are now waiting on some Mitochondrial test results which won't be back until Oct.

It has been heartbreaking and the medical expenses just keep piling up (some caused by my own recent unexpected surgery). Our little Rae of sunshine is special needs. I don't think anything in life prepares a person for that realization. Every time we think we have the bills and our emotions under control, another rug gets tugged and we're falling to the floor...again.

Our official diagnoses as of July 9th are: Hypotonia (read about it here), Myopathy, Global Developmental Delay, Epilepsy (read about it here), Scoliosis (read about it here), and Nearsightedness (she looks cute in glasses). Fortunately, those little inches keep adding up and now, at 22 months, Rae can sit independently for over 30 seconds, lift her head while on her tummy, and can finally bare some weight on her arms (just a bit). These are impressive developments in our home and this is just the beginning.

I kept holding onto the belief that we would be able to manage this on our own and recently came to the conclusion that we needed help. Since the account was opened, we have gratefully and thankfully received $550 towards Rae's medical bills. Some given through FundRazr and some given to us directly. Words can not express the gratitude we feel towards those that have so generously given. Thank you!

Sun Beams: Walk the Talk

It's been over two weeks since the RAEdiant Striders braved the inevitable downpour and walked for the Epilepsy Foundation on March 31st. A lot has happened in those two and a half weeks which is why this post is late in coming.

The RAEdiant Striders!

First, I'd like to say a big THANK YOU to those that came out to support us. It meant the world to me that you came even though we all knew a torrential rain was heading directly for us. I even cried a little because even though I know we're not alone there are times when I feel like we are and seeing you all gathered there in spite of the weather overwhelmed me with feelings of the support and care you have for us.

Rae was fascinated with the purple balloon.

Secondly, a big THANK YOU to everyone that donated to our walkers. By the end of the weekend we raised $355 for the Florida Epilepsy Foundation. Their grand total for Walk the Talk was $44,986 and we couldn't have done it with out your contributions.

Our little RAEdiant Strollers ready to ride!

Thirdly, a big THANK YOU to those that wanted to be there, but were not able to due to prior commitments or illness. I appreciate that your hearts were with us.

Tuckered out after an exciting long day.

The Plan

When I was about 8 years old, I remember going into the woods behind my house and digging in a giant dirt mound. I imagined that orangey, clay like mound was an archeological dig site (it was actually dirt from a retention pond they made for a new subdivision) and I was on the verge of discovering something of great scientific significance. I thought to myself, "Wouldn't it be cool to be an archeologist and help rediscover the past?" I'm not really sure why that particular occupation was the front runner for an eight year old, but I'm pretty sure it had something to do with the giant stacks of National Geographic magazines my Dad had in our living room. Secretly that became my "plan."

I'm still doing photography,
just less of it than I did before.

Well, my "plan" changed and by the time I was about 14 years old I told my Grandmother that I wanted to become a photographer. My inner self wanted to travel the world, with no attachments, have wild adventures, and capture the world through my own point of view. The ultimate "plan" at that time was being published in National Geographic magazine. My Grandmother's reply to my chosen occupation, "Well, that doesn't sound to stable and they don't make much money." She grew up during the Great Depression and stability was everything to her. So, I nodded my head in agreement and said, "Maybe I'll become a physical therapist." (I liked helping people) My Grandmother smiled and thought that sounded like a great "plan." Truth be told...I HATE science!

Fast forward a few more years (past high school) and life has now gotten in the way, my "plan" of becoming a photographer was almost completely squashed for many reasons (one being a very unsupportive photography teacher that only showed interest in jocks and pretty girls), and I found myself running on the hamster wheel. My "wants" and insecurities overpowered my "plan." So, I caved, enrolled myself in college for a business degree and believed I was destined to become another corporate lackey. My "plan" changed once again. I HATED business! (primarily because of all the math)

Skip ahead two more years and I changed my "plan" again. Now I was diligently working towards a degree in History (kinda close to archeology...sorta). I worked, studied, read A LOT, wrote A LOT MORE, and managed to complete my BA in History with a minor in English Literature. I thought I'd get my Masters and teach at the junior college level someday. Education doesn't pay and I had bills...LOTS of bills. During all this time, I was on again and off again employed. I chalk it up to my restlessness because nothing I was doing was what my heart and soul were telling me to do. So, I made another adjustment to my "plan."

The proud college graduate!

Before I finished my degree (by the time I was 27), I was married, we were looking at buying our first home, and trying to conceive Rae. When the pregnancy test showed positive we had to work on a new "plan." I would return to work sometime after Rae was born. She would be enrolled in a good daycare and everything would be perfect. We'd build a garage for my husband's '53 Ford and I'd get a small studio space in our attached garage to work on my projects (I have never entirely given up the photography "plan"). The "plan" was perfect. We could do this!

Eighteen months after the birth of our daughter and I can honestly say, "We have NO plan!" Every day we are working towards the next day. Not a year from now. Not six months from now. Not even one month from now. We planned our life around the idea that there wouldn't be any major kinks in the "plan." Well, we had a kink...Rae has special needs. So, my "plan" has changed once again...it's a blank slate.

I still have a sketchy idea of a "plan" and it is usually prefaced with many "if's." IF Rae doesn't walk. IF Rae has to have a wheel chair. IF she has another seizure. IF the doctors can actually diagnosis her. IF we can find some assistance. IF...IF...IF...IF

What I can definitely "plan" for are more days like today... Taking a break to spend the afternoon with my best friend Olivia (Rae's honorary Aunt) & her son Oliver (Rae's boyfriend). Watching as Rae takes her first swim of the year and with gentle splashes in the water (a newly developed pleasure). Smiling as the water hits her cheeks and laughing at her own silliness. She had a great afternoon swimming, playing with Lily the cat (see video), eating Cheetos (yup, you read that right), and watching Dinosaur Train. I also "plan" to enjoy the present and try my hardest not to worry about the next kink in our "plan" that may or may not change our course.

"The best laid plans of mice and men often go astray."

Robert Burns

Sincerely Happy for You

I have had many years to try and learn the art of being genuinely happy for others when inside I am collapsing from the weight of my own burdens and struggles. It is not easy and more often than not I probably fail...epically, but I try so that has to be worth something...right? I'm sure at some point in time you have all been there. Heck, awards season is probably the best example of being happy for someone else. You sit in your seat, smile (make sure it reaches the eyes because that's a dead giveaway), clap your hands (not too fast, but not too slow), offer a hug or handshake, and maybe (if you're like me) go home and collapse on the floor of your shower while hot water washes over you taking your tears down the drain.

Just a few minutes old.

If you're the woman who desperately wants a baby, watching while every woman around you has a baby bump, waiting, crying inside, having tests performed, and not understanding what you did wrong. I've been there with you. I've cried those same tears and yelled at God (literally...I could so not be Job) for what I felt was some cruel joke. I plastered a smile on my face and, with a heavy heart, played shower games, listened to baby names, and mustered up as much happiness as I could manage. All the while, hoping that it would be my turn soon...it took us nearly two years and many emotional meltdowns (all mine).

If you're the mother sitting on the park bench watching children toddling around a playground, climbing steps, sliding down slides, and running to their parent(s) when they fall  (as they inevitably do), arms stretched out, demanding the comfort only they can offer. The whole time you're sitting with your own child in a stroller or on you lap...waiting, wondering, and anxious. I am currently there with you. Feeling those tiny pin pricks in my heart. Dreaming of the "someday" yet to come and dreading the question I always seem to ask the universe, "When will it be her turn?" Deafening silence is the universes reply because there is no answer.

At the park.

I am the mother clinging to any sliver of hope within my grasp. My heart longs to chase Rae around the house because she doesn't want to put on her pajamas. I want to see her run barefooted in the hot sand, the wind blowing her champagne hair, wildly laughing while chasing seagulls into the sky. When I was pregnant, I had so many dreams of what my daughter's life would be like...and now those seem more like fairy tales.

I have yet to master the art of hiding this particular sadness from those around me. I try to smile, but I know it never fully reaches my eyes. There is no twinkle. An air of sadness lingers over me. It is during those moments of uncertainty that I hug Rae just a little too tightly. I seek comfort in looking at the curls of her hair and brushing them from her eyes because then I don't have the strength to look at the person/friend sitting beside me. If I feel really uncomfortable, I attempt to dodge any potential discussion by commenting on how well their child is _______ (insert random milestone) or I start talking about something completely unrelated. I'm sure they all see through these defense mechanisms I have developed. Just call me Mrs. Cellophane.

Slow & Steady...

All that being said... I am also the mother that wants you to know that I am truly happy for you if you are one of those mothers playing on the field. I'm happy that your child has met and continues to meet their milestones. That those precious moments of their first steps are intact. Their first words spoken with loud exuberance. That you now have to chase after them when they catch you with your guard down and run like an escaped prisoner seeking freedom (usually the street or parking lot). Please keep that in mind when you see me. Don't censure your own joy because of my heartache. I may want to celebrate with you. It's what friends do. It's what people should do.  And please don't take it for granted...

As for me...one day I will be one of you. I will no longer be sitting on the bench waiting my turn. I just hope I always remember to be sensitive to those that find themselves in a similar situation that I now find myself...living in Amsterdam and trying to find my way out of the airport.

Sun Beams: More Little Victories

We have a couple of exciting developments to share...

Two weeks ago, while reading Goodnight Moon to Rae, I noticed that she started helping me turn the pages, which is a great improvement over trying to eat the pages. I couldn't wait to show her PT.

Then this past week, while my Franklin and his, then girlfriend, Rae (now fiance, Yippie!) were visiting she taught our Rae how to "high-five." This nearly brought me to tears because it's the first hand gesture that she's done and it's been consistent (four days in a row and counting).

I still tear up thinking about those precious "high-fives" and how long I've waited to see her use her hands. We're so grateful for these little victories because they keep us focused on all the progress Rae has made and the progress we know will come in time.

The People Holding You Up

More than often I get lost in my own little world. I have insulated parts of my life from the rest of the world and not in an effort to protect my daughter, but to protect myself. At times I am very fragile and vulnerable. Kid gloves are recommended from time to time depending on new "developments" (not the kind I celebrate by jumping and down for) in Rae's condition. I close off from the rest of the world, bury myself in research, cry a few times if the need arises, and try to figure out which course of action is the best. It is a cycle many are familiar with and at times leads to a deeper sense of feeling alone.

Then one day my best friend was playing with Rae and stated that she has been worried that Rae wasn't connecting with her and that she too was trying to figure out how to maneuver through this Hypotonic world that we all find ourselves living in. Her statements hit me like a MAC truck. I never thought about how she was coping with her relationship with Rae and how that made her feel. It was an eye opener.

More often than not, I see my world through a tunnel with one primary goal in mind, helping Rae's development progress and finding out what is causing the Hypotonia. This tunnel vision helps me keep my eye on the "prize;" unfortunately, it also obstructs my peripheral vision and I forget that there are others on this journey. Our friends and family are walking with us and are also struggling to cope with the change in expectations we all have for Rae.

I am so grateful for all they do for us... They offer me comfort when hopelessness envelops me. They bring a sense of humor to every situation that merits a giggle. They celebrate the little victories and act like fools with squeals of, "Yea, Rae you rolled over/waved/held your cup!" They are constantly seeking answers and try to find the silver linings within the storm clouds. They listen to me when I fret, which happens a lot, and hug me when I cry, which is often. They offer me words of encouragement and lead me to new resources for help. I would be completely lost without them!

My new challenge now is to remember that they are also taking steps into unfamiliar, and at times terrifying, territory. While we all muddle through this quagmire I am making a commitment to my friends and family to do my best to remember I am not alone and they too might be struggling with Rae's Hypotonia. It is all too easy to get tunnel vision and forget the ones standing beside you...holding you up.