Wednesday, August 29, 2012

Sun Beams: Standing Proud!

I haven't posted in awhile because...well...I've been busy and maybe a tad lazy. There was so much going on and so much I want to share that I just didn't know where to start. Unfortunately, I am making this a very short, concise post because we're on vacation starting tomorrow and won't have access to a computer for a few days and while we're gone ALL our computers will be having general maintenance done by our computer guys (BNT Enterprises). So, without further delay.....

Here's some of our most recent good news:

Rae stood! She placed weight on her little feet and stood. She has done this twice this week. I ran around the house looking for my camera, propelled by pure joy, and immediately sent out text messages to friends and family! Here's a pic...

Rae's scoliosis has gotten better and the curve reduced by about 15 degrees! Amen!! If it wasn't better they were going to recommend bracing.

Rae has been consistently prop sitting for 30 seconds or more.

We were approved for Occupational Therapy (OT) to come once a week and met Karen for the first time last Wednesday. She is a ball of energy and a welcomed addition to our care team.

When we get back from our vacation, Daddy is going to put up Rae's new swimming pool and I can't wait. She loves being in the water. Thanks Mimi and G-Boss!

I found a bike trailer on clearance at Target and it was marked 50% off! This was a major score for me because every now and then I feel a little trapped in the house, but the weather here is starting to shift into fall and I can taste freedom from these four walls. Super stoked!

There is so much more I want to share, but time is ticking away and I need to get packed. I hope you all have a wonderful holiday weekend. I know we will!

Thursday, August 9, 2012

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.

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!

Wednesday, August 8, 2012

Factual Omission

I have this book that has been sitting on my shelf for years now. It has been boxed up and moved to and from at least three different homes. I have never read it. It is a New York Times Bestseller, but I never bothered to open its cover. I bought it at a yard sale and from the obvious wear and tear the previous owner(s) believed this book was something that should be read. So did the critics. Now, I have decided to knock the dust off the cover and read The Jane Austen Book Club*...finally.

In less than 100 pages, I have already been given something to mull around in my mind.

While reading chapter two, the author begins to flesh out the character Allegra, who has secrets (don't we all), and her lover is determined to drag them out of her with pleas of intimacy, "They'll be our secrets. Trust me." (Does that sound like she could be trusted?) The first secret Allegra shared is about an encounter in grade school with a "special" boy named Billy. Billy often talked to a basketball and on day showed Allegra his privates. Weeks after this incident, Allegra decided to tell her father what she saw, but her motives for telling are questionable. This is her big secret.

She wanted her father's complete attention and wasn't receiving it. In an attempt to gain it, she told him about this older boy that showed her his privates while on the playground. Unfortunately, she omitted that he was in the "special" class at school and that he spoke complete gibberish to a basketball. If she was seeking attention she definitely got it...her father hit the roof and demanded the boy's name. Once given a name, he drove to Billy's home to confront his parents. What greeted him at the door was a distraught, disheveled woman that accused him of not even caring about them...that no one cared about them. Billy stood behind his poor mother talking to his basketball. Filled with contrition for his behavior and disappointment in his daughter the father stammered his apologies and sent Allegra to her room when they arrived home.

This got me thinking... How often have I omitted or embellished pertinent information from a story in an attempt to influence a listener or reader's perspective? Have I carefully crafted a story to make people join my side or pay attention to me? Is my need for attention or sympathy so great that I would disregard facts? As a student of history, I was taught to remove as much personal bias from my research and writing (not an easy task). As a student of literature and creative writing, I was taught to tell a great story, which at times requires embellishment, larger than life characters, and/or filling in the gaps when needed...even if the information is a fabrication.

Facts can be a game changer...whether omitted or shared. Even while writing this blog, I know there are things that I omit from my stories. Tiny facts that, in my opinion, won't make much difference in the end, but maybe I'm wrong. My perceptions of the world around me, my motivations in any given situation, and my interpretations of events are filtered and based on my life experiences. Without knowing some of those facts about my life how can a reader fully understand why I do, say, think or write the things I do?

Here are some of my personal facts (at least a few I am willing to share right now):
  1. My father was spiritually raised in a Rescue Mission. My mother was spiritually raised in a Lutheran church. My brother and I were spiritually raised in a Southern Baptist church. It is deeply imprinted into our core. Some hints of that influence may show up every once in awhile and it might start showing up more often in the near future. I will not apologize for this.
  2. My family is a run of the mill, blue collar, skilled labor, everyday kind of family. We are middle class...not upper middle, but not necessarily lower. I grew up surrounded by gruff, hearty, loud, giant (and some not so giant) men. Mostly mechanics or engineers or some other closely related field. The kind of men that once they are gone the room feels too empty. My husband is one of these men, just not so loud or gruff.
  3. I grew up heavy, big boned, plump, (insert random alternative term for FAT), and it totally shaped how I view the world. Those wounds heal with time and perspective, but those scars always remain. I lost the weight through surgery (no, I didn't take the "easy way out" it was very difficult). As a result, I have lived on both sides of the fence and both are complicated, hurtful, and beautiful all at the same time.
  4. I wanted a daughter more than anything in the world. I craved a perfect little girl of my own that I could have that special, Gilmore Girl, kind of relationship with that so reflects my own relationship with my mother. I never thought for a second that she wouldn't be 100% healthy and...dare I say... "normal." It has turned my world upside down.
I know that last one isn't so secret since this blog is about that particular fact. This blog is about the depression I try to fight back until I am exhausted causing a near nuclear meltdown. It's about about the little joys we cling to and the sorrows that threaten to swallow us whole. It's about open, honest, humorous, fact based (I do sometimes embellish...just a little) sharing in an effort to let others know they aren't alone. It's for the parents, grandparents, siblings, aunts, uncles, and friends that are also walking along this road and may not be able to fully express their own worries and fears. Mostly, I pray, that this blog will offer hope and support to those facing similar situations. The lessons I am learning here aren't just applicable to children with special needs. They are life lessons...

This journey is also teaching me a new sense of humility. I am recognizing my faults, missteps, and errors from the last few years and I am sharing it all with you. I DON'T want to omit information from my writings. I DON'T want to mislead you or manipulate feelings of pity for attention. I DO want to make my writing enjoyable to read, but the facts must be there or it is all for nothing. I am recommitting myself to offering you the most honest look at myself and our life...the good, the bad, and the in between.

*Between you and's sorta okay.