There are times during my days, now filled with countless phone calls and paperwork, that I am so focused on advocating for my daughter that I experience a detachment of sorts from the very emotions that keep me fighting for her.
Sometimes, when the bottled up sadness and loneliness rear their hard-to-fight heads, I ask, "Am I making a mountain out of a molehill?" Or, "Am I exaggerating the reality?" Truth be told, I have always had an innate ability (or in some cases, disability) to feel every ounce of an experience or situation and it is because of this that I choose: become paralyzed by the feelings or funnel them into action.
Lately, all I have done is act. When I accomplish a task such as winning an appeal to have medical insurance cover the near $200 per week formula for Anna's nutritional and GI-needs, I half-jokingly tell Manny this job well done is being filed into the "I'm awesome" binder. Yet telling yourself you're awesome versus people accolading you because they think you're awesome are two very different things.
There's this line of, "It's cool to kudos, but don't overdue it."
Then there's the other "stuff" like finding social services Anna can qualify for, filling out applications, sending in copies of every report and bill we've had since October 2009 when our search began. For eight months, and especially in the last three, I've essentially been hanging on for dear life while this ornate screenplay that I have limited control over unfolds, while I try to direct, produce, and cast, all while not knowing the next scene.
My sadness, loneliness, grieving, anger, bartering and guilt have been quite handy in propelling me into action.
I then ask (over and over again, with every tinge of emotion), "Should I be over this whole diagnosis by now? Am I building a mountain on top of a molehill? Am I playing it up? Dramatizing? Am I late on accepting this and, essentially, moving on? I need to just buck up already."
But how does one "just buck up already"? Is it how I have done so lately, shoving the still fresh emotions deep down, turning away from self-pity and focusing on the present, which is honestly pretty good right now, albeit busy and overwhelming sometimes?
The "take one day at a time" is easier said than done, although I should be a pro at it by now. I think, "If I could just know what her life will be like, it will be so much better." Why, though? Its my need-to-have-control chip. I wish sometimes I could just pluck it out and toss into the East River.
I witness everyday the amazing relationship between brother Gabe and sister Anna. But I question, very appropriately, will there be a day that Gabe questions Anna. Or me. Or Manny. What young person hasn't questioned the very relationships that have formed him, molded him, influenced him. It is a realistic question to ask, "Will he always be so wondeful to her? Will he ever wish our life were different? Or at least, relatively easier?"
My own experience, no matter the social, medical, physical or any other classification of any younger sibling, is that there comes a day where you wish their life (or yours) were different, or at the very least, easier. When kids called Shaun "Forrest Gump" because of his limp, I threatened to beat them all up and set their souls on fire. And while it pissed him off, and he was upset at first, mere moments later he said, "Forrest Gump busted out of his braces, who says I can't either?" and went to shoot some basketball hoops. He said he had a choice to make, let it affect him or not. He didn't.
As for my own grade-school taunting, when I was called four eyes, metal mouth or pizza face and had to suck on my inhaler to get through 7th grade gym class, I let the others affect me so much that I swallowed tears during many of those awkward, pubescent days. (I was not one of those girls who went through it gracefully.)
Goes to show you the differences in our resiliences, no?
The hardest truth to come to grips with is that there is no crystal ball, and although I'd like to say I truly believe that is for the best, I definitely don't. (Control-chip wrote that.) For now, I have to get back to taking it one day... And one mountain... And one molehill at a time.
3 comments:
It's only been 3 months since you've had this answer so no you're not overreacting in your emotions or in wanting to do everything you can to improve Anna's and your own life. Gabe will question when he's older, but he loves Anna and I think that will always win out over any rebellion or resentment that he has along the way. I spent a lot of my childhood and teenage years resenting my siblings - part b/c I hated the "set a good example" talk and part b/c I wanted my parents' attention and despised the car seats and diapers that lingered into - oh wait - my youngest sister is still in a car seat ;) But I love my brothers and sisters, more and more over time I see them as my best assets - worth the return on the diapers I changed and the noses I wiped. Anyway, years from now, if a hug and some affirmation aren't enough for Gabe then he'll just have to hear the "that's life kid - tough sh*t" talk... Don't worry Stef, you guys are great parents. The crystal ball at my desk is showing many good times ahead for all of you.
Angela is right.
It is good to get these things off your chest, I feel your pain in your writting.
Children are resillient, remember of your own relationship with Shaun, are you resentful or loving towards him and your parents? Gabe is a smart and loving little kid.
Anna's life will unfold the way it is supposed to and there is no amount of "control" or worry or anything you can do to avoid that. You are doing what you are supposed to be doing trying to make things easier for her and for you, but somehow, I don't think you stop there, I think that you love and cuddle her, talk to her, are the good mother that you cannot help but be.
My crystal ball has the same prediction, everything will be fine.
Love and miss you all
PS: You are awesome :)
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