Here I sit, in a house constructed not of lumber, concrete, and insulation but rather misfiring neurons, grey matter and emotion. This mental dwelling is well fortified and projects a strong facade, but underneath that smooth vinyl siding is an eggshell fragility that sits backseat to false bravado and confidence. What is projected to the masses is really oppositional to the reality, for the truth isn’t pretty, upbeat, clever or witty. No matter how much self-reflection, introspection and counselling one has, the scars never leave. They may fade, and you may forget but they always rear their twisted heads to remind you that you will always be that damaged person inside. Time heals over wounds, it takes the sting out like Bactine on a cut, but they still exist beneath the surface. Just waiting for that moment to strike your psyche and remind you that no matter what you have accomplished over the years, you are never going to be good enough to deserve longstanding happy. I tell myself, it’s just the way it is kiddo………..enjoy happy while you have it because we all know you won’t have it forever. Somewhere between beaten down young thing and forty-one year old survivor I let my soul slip into purgatory, and now I don’t know how to escape.
After a harrowing Costco trip that once again had me calculating the cost versus benefits of having children, I was bestowed the honor of hearing a nicely placed F-bomb by my eleven year old son. It was used to punctuate a sentence and done rightly so, may I add. His sister had taken the opportunity given by a busy parking lot filled with drivers, of questionable abilities, to push him in front of a car. Nicely played young one…..in the dog eat dog world of sibling-hood it was as close to checkmate as she’s gotten. His response was “She pushed me in front of a fucking car mom!” after I threw a comment at him to stop “screwing around” (I admittedly was watching a train wreck of another sorts, gleefully glad that I was not airing my domestic dissatisfaction in a warehouse parking lot) . Ahhh, yes. I got it. Had he said, “she pushed me in front of a car” I may not have taken him seriously. Frankly, I hear inflated bullshit all day long. I have already picked out my Oscar dress for when he accepts his award for “Best Dramatic Performance” because at this rate, he’s going to be fucking phenomenal. See? I just did it there….punctuated the adjective just like he did to the noun. I can appreciate his usage. Its just a word as far as I’m concerned and as long as it isn’t aimed at someone, around small children or other adults who may not appreciate the effectiveness of such a word, well I’m cool with it. This was not how I was brought up….in fact I was hot sauced for far less heinous infractions. Talking back in slightest could warrant that unyielding burning, so I can only imagine the napalm strength punishment an F-bomb would garner. This all said and done, I admit, I did look around to see who else had heard and threw out a, “oh we don’t talk like that” to appease the hot sauce gods that still leave a physical memory on the back of my tongue. He simply raised an eyebrow, and said, “A FUCKING car was going to run me over”. Touche, little man. It truly was a fucking car, you truly could have been fucking run over and if your Granny was here, you’d be fucking hot sauced.
I am my own worst enemy. In fact, I’m fairly confident that if faced with a firing squad I would smirk (my default when nervous) and spit out a comment that had enough of an edge to thoroughly piss of those on the rifle’s butt end. Go big or go home has always been my mantra, unfortunately I use it like a suicide bomber. Once I’ve opened that door, once I’ve pressed send on an email, once I’ve gone and opened my mouth….well I just can’t stop self destructing. I consistently tank myself on a regular basis and at the time the consequences of my words, spoken or written, are moot. I’m basically the human equivalent to curb stomping, doesn’t make a hell of a lot of sense and just propelled by the moment. Driven by emotion, I never steer the situation straight down the narrows. Instead, I drive it right into the brick wall, repeatedly backing up and slamming into it again and again. I have no idea why……………….it’s probably a deep seeded need for control over a situation I have where I feel no control. Unfortunately acknowledging it doesn’t diffuse it, nor does it make it acceptable. The best part is that after, like the guy who slaps his wife in an argument, I wish life had a rewind and erase setting. Funny enough, it doesn’t stop me the next time, so with that I’ll leave you with my theme song (and my honest to goodness ringtone):
It was October 13, 2001 and our wedding was held at a fancy, private golf club that my future father in law belonged to. The event itself was very elegant and refined. A string quartet played Pachelbel’s Canon as I walked down the aisle in a mocking white wave of fabric, tulle and buttons that crawled the length of my spine and then uniformly led to the hem of the train. The tight bodice and princess like puff of the skirt hid the burgeoning reason behind the event and I couldn’t help but think shotguns should have held court on the tables instead of Leonidas roses. That would have been reflective of me, and my personality. I had toyed with the idea of addressing the elephant in the room when picking out invitations. How funny would it have been to receive a crisp, slightly textured invitation with “It’s a shotgun wedding!” emblazoned across the front in a heavy black ink that afforded no confusion in its meaning. That however, was not what I was marrying into. This was not my wedding……it was my interpretation of the “right” thing to do. I was so unsure of myself, my decision-making capabilities and my sense of self-worth that I made a choice based on what I thought would please everyone else.
For many years I have been a good wife. I have cleaned, cooked and cared for the kids. I wear an apron when I bake and have always made sure that a cold beer was chilled for his arrival after work. Two years ago I began to realize that I wanted more in my life, that an integral part was missing from my marriage. It wasn’t material things, for I definitely have not gone without, but what I really want is a person who knows that’s not the way to my heart. One year ago I began to take action and we started seeing a marriage counsellor. The unfortunate part of talking about your feelings is that people are hurt and disappointed but the truth came out regardless. A few months ago a very old love reconnected with me, and I learned that it was possible to want to talk to someone about everything. That’s something I’ve never been able to do, but I was almost there….it was proximity that stopped me. There are parts of my past that I have never spoken of….to anyone..I just haven’t been able to. This truly was the first time I’ve actually ever wanted to share. The lump in my throat keeps all that pushed down deep, and maybe it’s better that way. I envision a steel door on my heart and in my mind that locks it all up, but like The Tell Tale Heart , it plagues me. Guilt that isn’t mine to own, yet I do. Fear of trusting others to not walk away, not judge me. Like I said, I wanted to tell this person and that was a first. It wasn’t meant to be however, as he was a better person than I (I think). As heartbroken as I was (and pathetically still am) when he disappeared, I learned a fair amount from that pain. It solidified what had been pooling for the past few years, that I deserved to try to have more. I may never have it, but I deserve the opportunity to try so I press forward with ending this chapter in my life. When all is said and done, at least I now know what I want and it would look something like this:
You see, being in someone’s thoughts everyday is a far greater gift than a Coach purse, or a piece of jewelry. I would give everything for that.
If I had shared this little bit of insight with one person eleven and a half years ago maybe my path would have been different. Then again, those eleven and a half years have gifted me two really cool kids, each of whom has taught me that I need to be their template. Their example. Their role model. This, kids, is what happy looks like. This, my little characters, is the reward of balancing the needs of others with the needs of yourself. In this respect, I have failed you to date, but change is happening whether you know it or not. It will be hard, and it will hurt. I will not lie, this will be a challenge and a test. We, however, will get through it together and life will get better. I promise. Just take my lesson, and always, always be upfront.
Having a child with special needs is hard. It’s a crash course in patience, advocacy and the DSM IV. You become the teacher to a new batch of interns every year as they shadow the specialists, who in their own right defer to you as the parent for a clear overall picture of your child. In truth, you are your child’s specialist….the only one versed in the intricate mosaic that makes that child who they are, special needs or not. Having needs just adds an additional layer of challenges and adaptations to the daily grind.
My daughter is eight years old and she is a beautiful, lithe, blonde thunderstorm whose presence is punctuated with bursts of gut level laughter and a sweetness that sours sugar in comparison. I first met my girl on a Friday, at an ultrasound. I had gone alone, her father had been night shift so I didn’t see the need for him to tag along exhausted. I’ve always been an independent kind of bitch that way and he didn’t argue the point. He would see the grainy black and white when he woke up. My son had simply been a skull floating in a sea of mystery at that first ultrasound. How different could this be? Apparently very, as my definition of different would soon take on a whole new meaning with subsets. The phrase of this day turned out to be renal abnormality, bilateral renal agenesis to be exact. In one fell swoop of words the doctor told me that the fetus did not appear to have kidneys, that this was incompatible with life and then politely asked “did I have anyone to drive me home?” I did not, but I can now pin point that moment as the beginning. The genesis of my thicker skin (in some respects) and fuck you attitude.
Present day….my baby girl proved those doctors wrong. She did indeed have kidney’s, what she has is a bilateral duplex collecting system that through medication (four years of antibiotics) and numerous minor surgeries is controlled. Her kidney’s are now the least of our worries…..they work and that’s good enough for me. There is no simple explanation for my complex girl. The most honest doctor to date has been the neuropsychiatrist, Dr. Freeman, a specialist in Tourette’s Syndrome and other motor tic disorders. He very brutally told me when we met that my girl is one of a kind and I would never find another parent with a child like her, nor a support group that fully understood my perspective. I could however part myself out, so to speak. Sit in on various groups addressing specific issues..from those with children with cognitive impairments, to Anxiety disorders. Sensory processing issues? Check. What about a group for verbal and or auditory processing disorders? Yep, that applies too. Tethered spinal cord, twisted spine and no hip sockets…you could accurately say we have become tight with the orthopaedic surgeon. ADHD, OCD and WTF. It’s an endless list really, or at least that’s how it feels. I pick and chose when it comes to finding others to talk to because frankly there’s a good number of people who are defeated by their child’s diagnosis. I get it. It’s grief. Everyone has that vision in their mind’s eye of what their child will or could accomplish. A diagnosis means that dream will never come to fruition in the way you wanted it. You need to shift your expectations, make those goals attainable and accept. Now I’m not saying just lay down and give up the fight nor do you let doctors dictate your child’s future. Doctors can be royal fuckers. We have taken her for three assessments to date for Autism because doctors can’t agree. Some say Autism (which would bring her government funding for therapies) and others say no, just a complex little girl with seemingly autistic like characteristics, but not enough to fulfill the diagnostic criteria. At the end of the last assessment the doctor told us that she would probably not mentally progress past that of a ten-year old. Ever. That’s it. To soften the blow he told me a delightful tale about his ten-year old and how she can make cookies all by herself. Well fuck you and your condescending story, buddy. I sure am glad that your daughter can whip up a batch of chocolate chip goodness but I have bigger dreams for my girl. She is smart and clever in a way that is different, we just need to adapt our world to include hers. She is ten times more interesting than your normal kid and a million times more fun to hang out with. My baby is special because she’s a goddamn rock star who kicks ass daily. Fuck pretend play……..she can’t see others perspectives and really who the hell needs to put Barbie through the atrocities that most 8 year olds do. So parents, just accept that this very special person has been gifted to you of all people, for you as a parent of a special needs child are special as well and you both kick ass. You will need to become an educator, as well as an advocate. My sweet little demon has Apraxia and actually can’t speak in a way that anyone who doesn’t know her well would understand. She also has Tourette’s which consists of a variety of changing tics (not everyone with Tourette’s has the oft spoofed spontaneous utterance of taboo words or phrases). Some are exhausting, like the obsessive need to throw her head back and roll her eyes, or tightening her stomach muscles and releasing continuously. Some are just gross, for lack of a better word. Every spring brings forth burgeoning new growth, but it also means the return of her spitting tic. The thing about Tourette’s is that it controls you. It is a compulsive disorder that is painful to watch your child struggle with. It separates her from her peers, it drives her at times with such ferocity that I fear for her safety as well as mine as she grows bigger and stronger. It kills me as a parent to see the exhaustion on her face at the end of a particularly hard day. It makes me proud when she finishes a big series of tics and just smirks and moves on. Fucking rockstar and a half. Beat that normal kid.
I wish that I could say that the medical aspect was the biggest challenge for me. It’s not. Not the months, spent to date, in hospital, nor the endless appointments and constant tethering to that institution. The hardest part is not letting other people get to you. When your child is different, people seem to feel like they can ask you anything and, in a way, I appreciate them asking. This is the education part, I guess. That being said, your approach is everything people. To the man in Staples who came up and asked me, “What’s wrong with her?”, well honey….consider yourself lucky with my snappish, “Nothing. She’s perfect. What’s wrong with you for asking?”. That was me being polite on a difficult day. That was me after being smacked in the face repeatedly by my baby girl, and then having to hold it together because I know she isn’t hitting out of anger. I know it could be a myriad of things (the low hum of a fan, all the people, late meds) or a combination of all. I can’t tell you what’s “wrong” with her…..firstly because it would take forever to go through the litany of dx’s, and secondly because if I really thought you actually cared, instead of looking at my baby as a curio, I just may cry. I may lose my shit because I never get to let go, I have to hold it together all the time. Her father and I don’t connect on a level that I can talk to him about how I feel. I go to all the appointments, I know the proper terminology, I do the research. You see, ignorance is bliss, and you, dear stranger, should remain there as well.
The funny thing about what I’ve written is that I initially started off meaning to talk about how my girl was treated by some “friends”. I was so sad for her and angry and that was my focus. Time has afforded me the opportunity to let it go and see the lighter side, gain perspective, and really see how amazing my kid is instead. So, what am I saying really here? Special needs can be exhausting but sometimes, no make that most times, it’s fucking awesome. Way better than normal.
I’m not one to share publicly, nor is it in my nature to blather on about feelings and such. I hold close my thoughts, wishes and dreams…..I don’t share them even with those closest. Perhaps this is what has stunted me in all aspects of my life. Perhaps, just perhaps, a blog will cure my obsessively wound and slightly tortured mind. I’ve been broken longer than I have been whole and fixable I may not be, but I hope this process is cathartic. This is finally something just for me and whether I choose to share it, well I guess that’s left to be seen.