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 me...it's sorta okay.

Confessions of a Hypocritical Mind

Since beginning our life in Amsterdam, I have had many thoughts that have belittled our situation, have been demoralizing, and have been bitter. I am not proud of these thoughts (especially the bitter ones); but they happen, and it's how I proceed that matters. Now, I am speaking for myself and everyone may not agree with my sentiments (which is fine), but if I'm having some of these thoughts then I am sure someone else is as well.

When I first started hearing the term "special needs" my heart sank. I didn't really know what that would mean for Rae and for us. I knew that there were going to be some sacrifices we would all have to make and adjustments in our expectations/dreams. I was advised to seek out support groups because they would understand everything we are feeling or experiencing. They will also be our best cheerleaders, supporters, and guides through the quagmire of paperwork (doctors, insurance, programs, etc..). One would think there would be some comfort in all this, but my mind wondered about how they would perceive Rae's condition in comparison their own child's. Initially, she was ONLY Hypotonic and, at worst, would just have a few developmental delays. How was that special needs? How special was my seemingly short term issue in comparison to a child with Down Syndrome, Cerebral Palsy, or Angleman Syndrome? Wouldn't the other parents think, "Geez...I wish Hypotonia was our only concern." I was convincing myself that Rae's needs weren't that special and were nothing in comparison to other children's so what gives me the right to be so upset (she's my daughter that's what).

That's where the demoralization comes into play. This thought made me feel hopeless and alone. I wasn't allowing myself to feel the enormity of our situation. This nagging, critical voice kept repeating: "It's not that bad. Why are you so depressed? Other parents would be thankful if this was all they had to cope with? You should be grateful it isn't worse. Stop whining!" This dialogue is what I believed other parents would think if I shared my heartache with them. Essentially, I was judging other families (that I've never met) before they could judge me and that wasn't fair to them.  I have meet some wonderful parents that have been nothing but supportive, helpful, encouraging, understanding and, if appropriate, angry with/for me. They aren't judging Rae's situation as greater or less than their own and if they are they never give any indication that they feel that way. I was wrong in thinking that would be the case. While it is good to keep in mind that others may be in a worse situation than my own, I've learned you can't deny that your situation is difficult to cope with because it is YOUR situation.  So, if this thought has crept its way into your mind banish it at once. It will only hinder you from creating relationships with people that will understand your life better than others. But I have a confession...

Since last September, we have learned that Rae doesn't just have Hypotonia. She also has Scoliosis, Epilepsy, and was more recently diagnosed as having Congenital Myopathy (which type we aren't sure...yet). I have a sneaking suspicion that this will not be the last of her diagnoses, but only time will tell. Her progress hasn't gone as quickly as we would have hoped and her "milestones" are more like "inchstones." As a result, I will honestly admit, that the most shameful, hypocritical thought I've had has been just what I feared people would think of me when we first landed in Amsterdam. I, at times, feel slightly irritated by the distressing cries of another parent when their 1 year old isn't walking (according to Dr. Sears an acceptable range is 12 - 16 months). Upon further inquiry, the child is sitting independently, rolling over, getting into crawling position, and gives no indication of any other complications. There is no official diagnosis from a doctor only a parents suspicion combined with information from the internet (medical concerns are a dangerous Google query). It was a horrible thought and I'm going to own that I thought it... I mentally screamed, "Your child is probably fine other than a slight delay. Boy, I wish that were our only concern. Stop Googling because it will only make you more paranoid and you don't need to request invasive procedures (muscle biopsy) right out of the gate."

My mind raced ahead of my censoring ability and before I realized it, the thought was there. It was a fleeting thought that has no merit because no matter the extent of a child's developmental delay that child is still someone's baby. Someone's heartache. Someone's joy. Just as Rae is ours. My occasional bitterness is not supportive. It's alienating. It has no place in this world because we're all just trying to make it to the next "inchstone" and we need each other. I'm sure from time to time these fugacious thoughts will pass through my mind, but as I stated before it's not the thought that matters, it's how I proceed after the thought. I choose to be supportive, encouraging, and helpful.