Gracen and Hope (left to right)
Gracen’s third semester at John Brown University brought her a brand new roommate. That is when Hope (and I mean that in more ways than one) literally entered our lives. Hope is a confident, lively, opinionated, fierce and determined little thing. In a word, she’s a spitfire!
Gracen and Hope compliment each other. Gracen helps Hope keep track of things and Hope gets Gracen out in the world. But what makes Hope unique among Gracen’s friends, family and acquaintances is one singular thing. She is disabled – or uniquely-abled – as I prefer to think of it.
Gracen was born with a genetic disease known as ARSACS – a progressive neuromuscular condition which is a rare form of Muscular Dystrophy. She has been wheelchair bound for the last three years as a result of injuries sustained in a car accident and the progression of her disease.
Hope was born with Cerebral Palsy, a condition that generally occurs as a result of birth trauma. She gets around aided by two cuff canes and/or a scooter. Let me tell you, that girl can move! It’s absolutely shocking how quickly she gets from place to place with those canes.
Parents of special needs children worry about a great many things. Big things, small things and downright crazy things. That old saying that encourages people to major on the majors is really not applicable in a lot of special needs homes. That’s because things that are minor for average people are anything but for the uniquely-abled. Molehills are mountains and life demands the constant awareness of your environment or other impediments encountered in the outside world, from accessibility to socialization and adaptability.
From the time Gracen’s disease became apparent, I have been responsible for paving the way through and around the things that hinder her progress. But there are some things a mother cannot do for their child; uniquely-abled or not. The list just seems to be longer for Special Needs Moms. Among the things I’m incapable of providing for my daughter, friendship ranks high on the list.
As a mom, I can provide opportunities for Gracen to connect with others, but I can’t make real friendships develop. Over the years I have watched from the sidelines as Gracen (and her younger sister, Katie, before her death) navigated through the quagmire of social situations.
I’ve seen her overlooked, ridiculed behind her back (sadly by adults in some cases) and marginalized. It’s not something we openly talk about, but Gracen isn’t mentally disabled. She’s not unaware of what goes on around her nor of the motives of others.
Nobody puts Baby in a corner! ~ Dirty Dancing
Through the years, Gracen has surprised me in innumerable ways. I have watched her insert herself into activities and conversations repeatedly. There’s a line in the movie Dirty Dancing that describes Gracen well.
If you remember the movie at all, Baby is the youngest of two daughters. The family dynamics portrayed in this film show Baby to be sidelined by the (perceived) superior talents and beauty of her older sister. Baby’s the afterthought. She resides in the shadows, or on the periphery of family interactions. Johnny, the resident bad boy recognizes this reality. And at the end of the movie, in the triumphant moment, Johnny says, “Nobody puts Baby in the corner!” just before sweeping her onto the dance floor and publicly showcasing her talent.
That line, “Nobody puts Baby in the corner!”, describes Gracen to a ‘T’. The only difference being that Gracen doesn’t need someone to stand up for her. She has routinely refused to be overlooked. She refuses to be relegated to the corner. I don’t think I’ve ever attended a Parent-Teacher conference where a teacher hasn’t been surprised by her outspoken class participation. I’ve seen her insert herself among her cousins at family gatherings, her peers at church and in innumerable other situations.
I really don’t think this demand for acknowledgement is a personality trait so much as it’s a subconscious response to the way society as a whole treats the disabled. It’s as if she is silently telling others that they don’t have to like her, but they will not ignore her. Hope confronts the world in the same way. Still there’s a vast difference between being acknowledged and being befriended.
In the world we live in people have all kinds of motives for the ways they interact with others. Sometimes inspired by simple curtesy, shared interests or as a ministry project. Sometimes motivated by what another can do for them. Social interaction is a complicated and messy endeavor.
However, Hope and Gracen cannot be found silently sitting on the sidelines, enabling others to pridefully pat themselves on their backs for their inclusive character or acts of service for the Lord. No, Hope and Gracen can be found at a prominent table in the center of the room living large with strong opinions and copious amounts of sassy sarcasm – holding their own and dismissing those who see them as less than others.
And you know what? Hope and Gracen gladly invite you to their table because they have something of value to offer others, not because they have any need of help themselves. They don’t need the benevolent kindness of others (when it’s motivated by nothing more than thinly disguised pity) in lieu of true friendship.
The bottom line, of course, is that we all want to be liked and appreciated for who we are underneath all the subterfuge of human interaction. We all desire to be understood and wanted, warts and all.
Hope is her name, but it is also the gift she bestows upon Gracen and others who have found themselves living outside the norms of society. She serves as a reminder to others that their lives hold purpose and contribute to the world at large.
Hope is not the girl who goes silently into the night. Hope sweeps in like a hurricane, disrupting and reordering the people around her. She doesn’t leave a trail of destruction behind her; but she does leave others with the awareness that she is a person, not a project.
In Hope, Gracen found the first person who understands her from an experiential perspective. And that’s huge.
Indescribably Huge!
They have shared attitudes, feelings and frustrations. They look at the world though a lens others cannot fathom, let alone comprehend.
We all have a room in our hearts I refer to as the Ugly Closet. It’s the place where we hide all the feelings deemed unacceptable by society when everything within us cries out that those feelings are both reasonable and justified. When someone comes along and echoes those hurtful thoughts and feelings that door gets flung open in immediate and overwhelming relief.
It looks a bit like that famous scene from When Harry Met Sally*, when Meg Ryan demonstrates a woman faking an orgasm in the middle of a diner (minus all the moaning and head tossing). She slaps her hand on the table emphatically shouting, “yes, Yes, YES!” in a comical portrayal of physical release. But I’ve seen that exact response (I mean the table slapping and shouting) when an individual completes the sentence, “I feel like . . . ” the same way another person would. “Oh my goodness, yes! (Slap), Yes! (Slap), YES! (Slap)! That’s exactly how I feel (SLAP)!
That was the first gift of Hope.
And those words, that sentiment, has echoed repeatedly through the air every time Hope and Gracen spend time together. Hope carries true friendship with her every time she powers her way through the front door. (She doesn’t really walk – she’s too much of a force of nature to do something so mundane).
That’s why, anytime Hope comes to visit . . .
I refer to it as a day of Hope.
*Okay, the When Harry Met Sally scene is not the best example (it’s kind of tacky), but I seriously couldn’t find another where the hand slapping and yes, yes, yeses were so emphatic, and that’s the image I want to leave you with, because it happens just like that.
Is that why my longing for my eternal home is met with admonitions that I must have hope? That it is wrong for me to desire the rapture in order to escape these earthly sorrows?
Maybe that’s where the Holy Spirit steps in and performs a supernatural work in our hearts that enables us to receive God’s all sufficient grace instead of rejecting it in our agony . . . instead of taking action outside of the will of God due to complete despair and utter desperation.
There are days and moments and very long nights when I think, I can’t do this anymore. Come to find out, that simple thought is a trigger for tears.
continue to put on a brave face and hide the true depths of the pain and sorrow from each other so as not to increase their individual burden in this bizarrely intertwined protection dance we unconsciously perform. And as all this plays out within our home and personal relationships, the current culture demands that we have a positive attitude and recognize our blessings. It’s exhausting. It’s overwhelming. It’s frustrating. It’s impossible.
2. Avoid the use of platitudes and trite phrases. They serve to frustrate and unconsciously communicate unintended messages. (i.e., faith and trust in God mean things hurt less, our hope for eternity exchanges grief for joy, joy and happiness are the same thing, the salvation of the lost justifies the death of a loved one).
5. Validate feelings. A grieving father who feels like beating the crap out of the person responsible for their child’s death is normal. It’s okay; it’s helpful actually to say, “I’d feel the same way if I were you.” Validating feelings in no way condones sinful actions. Feel free to tack on, “You’re not planning to act on that, are you?”, if in doubt.
mourning mother recently told me, “Emotions are for emoting.” How an individual responds to their emotions can be right or wrong but never simply expressing them. Do NOT tell the grief-stricken that they can’t or shouldn’t feel any given way or that their feelings are sinful!
8. Before you offer any advice, imagine yourself in that individual’s shoes; then personalize the advice. You are now the parent whose child just committed suicide. Consider how you might feel should someone tell you to count it all joy, or that God is good all the time, etc., before you offer any advice to the bereaved. Perspective changes when things get personal.
I didn’t lose a son and two daughters and begin picking up the pieces to move into a hopeful future. I live with the knowledge that I will always be picking up broken pieces and there is no way to repair the pieces that have been falling since MD entered our lives.
In truth, that idea is nothing but a craftily designed hologram. An idea without formative substance. It’s equivalent to the land of Oz and the impotent wizard hiding behind the castle doors and green drape.
My grief recovery is complicated by the anticipation of more loss and the very real and reasonable fear of the destruction another loss will wreck within my heart. Even grieving families that aren’t dealing with progressive disease often struggle with the anticipation and fear of more loss. They’ve lost their naiveté – they know bad things can and will happen to them – not someone else – down the road. But for most it is a vague Spector on the periphery of their minds. For me it is a far more tangible presence and I must find a way to make peace with that and what it teaches me about the Lord.
I have reached the point of acknowledging that the best I may be able to hope for in regards to ARSACS, may consist of a cycle of repeated but temporary interludes of peace.
Today, I am doing well to say without shame, my name is Janet Boxx. I am clinically depressed. I have anxiety issues. I have PTSD. I self medicate my anxiety with food. (Ok, that I’m ashamed of – although I’m happy to report that while I may be a glutton, at least for now I’m not a suicidal, drug or alcohol addicted, glutton). I lack the motivation to return phone calls, emails and text messages; to clean my house, pay bills, shop for groceries, do laundry and sometimes even to shower. It is what it is and my response to my life’s circumstances is not abnormal in the bereaved parents community, even two years down the road.
Boxx Banter 