Sister's Response

Months ago, I shared my last post and my experience from nine years about with my sister.  For years, I had feared talking with my sister, Tiffany, about the looks I saw flash past a strangers face as Tiffany and her medically fragile daughter walked past.  But now I am wondering why I waited so long, why I didn't have the courage to be honest and share what I saw and how it made me feel because my sharing opened up a little window of opportunity for my sister to share more with me.  As her voice was crossing the phone line, I wished I could rewind and record her immediate thoughts.  But instead, all I could do was ask if she could post a comment to the blog or perhaps write her thoughts down for me.  A few days later, she sent me an email with her raw thoughts answering my question, "Do you feel the looks?"  Ashamedly, I have hesitated sharing her writing here because it is lengthy.  And tinged with deep emotions.  I know her, I understand all the variables of her life.  I can understand what she is saying, but will a random reader?  I wanted to protect her from their judgement but I did not want to edit her words.  So I dragged my feet and let my last post hang opened ended.  But then I could not share other thoughts and experiences I had around human connectivity because I had not closed the loop of my last post.  I was stuck.  I would broach the idea of just skipping to the next subject or trying to figure out how to massage her response but neither option felt right.  And time passed.  And I told myself that is okay because nobody is really reading what I am sharing...nobody cares...
But I care.  Tiffany had shared her truth with me.  Her words are filled with realities that are often dismissed or swept under the rug.  By her, by family, by society.  It is what we do.  Avoid.  Pretend it will pass.  Disconnect...completely counter to what I started espousing.  We must connect.  So I will push past my own fears.
No sweeping here.  When we sweep, we miss connections that are real, we miss opportunities to learn from others whose lives are so different.   We miss opportunities to share experiences that may help others.   We miss opportunities to just be with someone, even if we cannot improve their reality. Standing with people provides an intangible support to counter the dismissiveness people often receive.  If this is read by two people or two thousand, it does not matter.  I have learned from this experience (from my sister and from my own behavior) and I am grateful for my sister's sharing.  Here is Tiffany's response written in July of this year. 

Written by Tiffany Vara, mother of five, living in Honolulu, HI.  

The question you asked me a few days ago, which lead to many other good ones, has been swirling around inside me since.

 Do I feel the looks?  Do I know people are looking at Abbie and I as I push her chair through hallways, down sidewalks, and to the mall?  Every. Single. Time.

 But, how it feels to me, and how I respond varies with each day, and sometimes several times within each day.  The key to understanding the choice of my response is envisioning the baskets I balance across my shoulders. Can you see them, filled with sand, pebbles and stones?

 Some days the baskets drag the ground, so overburdened by the load that the woven straw threatens to break.  These are the days when I am consumed with the fight, which is ongoing every moment of every day.  I have to fight the school system continuously, persistently, but with a smile, so that perhaps one day my sweet girl will be able to be in school every day with her peers.  I have to fight the insurance company for approval for things Abbie clearly needs.  These fights drag on for months, and are very disempowering.  Fighting an opaque structure, whether the school system or the insurance company, leaves me screaming into the wind, hoping that some faceless person in some cubicle somewhere who has never met my daughter will turn the lever to allow the things she needs to flow into her life.  To have a child so dependent on systems that are system-centric, with much less regard for her well-being than for their own convenience or bottom-line is excruciating. 

 Through Abbie’s journey I have been astonished by the goodness of people, but have been horrified to an equal extent by systems.  There is a direct correlation between the size of any system and the pain, frustration, and harm it can inflict on a child and family in need.  After ten years, I wish I could say my realistic point of view, and my experiences, have lowered the bar to the point where I can no longer be amazed by the inefficiencies, inscrutability, arrogance, and lack of accountability in the systems we deal with.  However, they continue to stun me, which is quite an accomplishment.

The energy, hope, and resilience that these systems sap from my family, and me in particular, cannot truly be calculated.  In the moments between the direct confrontations, the issues simmer in my mind.  I have to find a way to resolve things in Abbie’s favor, because she is counting on me.  I feel like David, but without a sling and stones, only words, and documentation, and law, which I find can be ignored at the pleasure of these systems.  The necessary involvement with multiple systems like these are a major differentiator between special and average families.

I am often made to feel like a beggar, a thief, a victim, irrational, unreasonable, and an object of both sympathy and scorn.  These are roles the systems have asked me to play in order to get what Abbie needs.  For years I went along.  No more.  It is liberating to stand up and say, “I am not a victim, nor a beggar.  I am not trying to steal something that is not needed or for which Abbie does not qualify.  I am not irrational, for I will outline the needs and requests using logic, data, history, and the law.  As I work in partnership, acknowledging the limitations and needs of the system, I am not unreasonable when I persist in my requests and will not accept a “no” based on system “preferences”.

These systems warp families.  They take stressed, but functional families, and tell them that they must become dependent to get any help.  In the years since Abbie’s injury the laws have changed so that for families with children like Abbie, they cannot get any support, nursing or otherwise, unless their entire family meets Medicaid criteria.  If they are just a smidge “too rich”, they are on their own.

Here’s what that means for a family of five with two working parents: in Hawaii it’s common for up to 50% of income to go to housing.  The baby of the family has exceptional needs  (trach, g-tube, wheelchair etc).  This is not the type of child you can get a babysitter for, only mom and dad are able to care for her.  So, dad works days, mom works nights, and they care for the child (and her siblings), when they are “off” work.

The solution offered to them, as they near exhaustion?  Lower their income, put their whole family on Medicaid, food stamps, etc.  Or, they can get divorced, since that would automatically lower the income and one parent could qualify for Medicaid.

On what planet are we living when a dad is told to stop providing as well as he can for his family, to stop trying to be as self-sufficient as he can, to become dependent on the state in order to get the help they need for one child?  And since when is divorce a positive solution for a need like this?

This is why I am so deeply involved in advocacy work, even though it doesn’t really resonate with me, and saps me of energy and peace.  I am blessed by being a stay-at-home mom, and we can afford a comfortable life.  This makes me feel guilty when I look at families like the (real) one I just described.  So I find myself giving a lot of time to meetings, projects, etc as a form of penance.  It doesn’t feel good, I often dread it, but feel that I must do it.  I am working on this, and may step away from advocacy for a while.  I realized recently, at a large disabilities conference (at which I struggled to find offerings that truly interested me), that my WHOLE life revolves around disability in one way or another,  so any time I am away from Abbie perhaps I should be filling up my tank rather than draining what little is in there.  It has taken me a decade to give myself permission to think this, and most of that delay relates to some very harmful people we had to let into our home and our life because of systems.

So, that’s a long way to describe some of the rocks that weigh heavy in the basket. 
And, when I am particularly feeling the weight I cannot look up and acknowledge the glances and stares.  I just want to be invisible.  My pain reverberates so powerfully sometimes that it feels like my skin has been stripped and I am walking, bleeding and raw, through a crowd, but no one notices.

It’s not just the systems I fight, it’s often Abbie’s own body, as it contorts after years of misaligned tensions and extreme stress.  Joints must be exercised to maintain movement, tissue must be given input to maintain structure and strength, bones must bear weight to maintain density, skin must be assessed and protected to keep from breaking down.  Lungs must be cleared, eyes frequently lubricated, and she absolutely must be put on her special commode chair many times a day because she detests using a diaper.  She can do none of this for herself.  So, much of my time and attention goes to doing things for her that most kids do for themselves, and then, after that, I have to find a way to teach her, since the schools have failed us miserably.

And, again, it’s not as simple as it once was.  Her vision is impacted by her brain injury, so I have to seat her just right and place the screen in the perfect position for her to see the material.   I have to come up with alternate ways to explain the hands-on portions of lessons, and recalibrate the quizzes and tests into multiple-choice format so that she can answer.  I have to come up with lesson plans, materials, and strategies that others can also use if I hope to have any help, as teaching Abbie is complex.  Many of her nurses read to her, which she loves, but teaching is a whole different level, and there’s no one that can move forward independently without great detail from me.

So, I am her physical, occupational and speech therapist day-to-day; I am a masseuse and body worker; I am her dietician and cook – figuring out what to feed her each day based on my own research and her reactions to food and supplements.  No one guides me on this anymore, as we are far beyond their traditionally-based levels of competency.  I flew up to the training for her communication system last year, when I stayed with you.  It is phenomenal for Abbie, and really opens the door to allow her to tell us what she is truly thinking.

However, making her communication book took 150 hours.  It is big and bulky, and she has to have a partner to make the system work.  Often, I know she has something to say, but my hands are busy doing something from the list above.  I am hoping that a computerized communication device will give her independence, but getting one entails yet another Abbie vs. The System fight.  So, for now we do what we can.  The school put it in her IEP 17 months ago – we were all going to be trained, and she would also use the book at school, so that she could become more fluent more quickly.  Only, the school hasn’t actually gotten the training yet, nor made a book.  So, it’s just me...pushing the rock up the hill by myself, surrounded by people explaining how hard their jobs are and how it’s so difficult to make the system work.  Good intentions from good people are nice to have, but they give me less and less comfort as time goes by and the intentions produce nothing.

These Abbie-shaped pebbles in my basket are always there.  I carry the weight of responsibility for her body, her education, her nutrition, her health, and her ability to connect with other people with me everywhere I go, whether she is with me or not.  I am never “off”.  I will never be able to do “enough”.  The pressure is inexplicable to anyone who has not borne this load herself. 

This is why so many special needs parents don’t open themselves up to others deeply.  There are two risks:  first, the other parent will try to apply their own life experiences in an attempt to understand the special needs.  “Oh, I know what you mean by sleep deprivation.  My two-year old still gets up in the night!”

I have had five healthy children.  I recall the depth of exhaustion I felt with twins who refused to sleep for the first two years of life.  It absolutely is difficult.  But, having walked both roads, I maintain that the invisible element, unknown and unappreciated by the uninitiated is the emotional and spiritual exhaustion that accompany, and often overshadow the physical exhaustion of caring for a child who needs you around the clock.  Comparisons to new-baby nights, although meant as a bridge, are actually a barrier.  Most special parents will not follow up and say, “No, really, it’s not at all like that.  Let me explain why.”  They will just smile, nod, and keep the conversation at the surface level.

Here’s why:  this life can be tremendously isolating.  Free time is precious and rare, so I can’t always be at the weekend barbeques, the sporting events for our other kids, or the girls’ nights out.  Sometimes I can’t even answer the phone.  And, most times I don’t return phone calls.  Believe me, I know I am flaky.  I know I probably come across as rude or ungrateful when thank-you cards, if they arrive at all, are three months late.  Connections with other people feel tenuous, as I wonder how long they will keep inviting if I have to keep declining because Abbie is in the hospital, or I don’t have a nurse to care for her.  So, when I do have a chance to be with other adults and explore a few hours of being something other than special needs mom (heels and lipstick are a major demarcation line), the last thing I want to do is alienate anyone.  I don’t want to be the dragon mom.  Tiger moms drive their kids relentlessly.  Dragon moms singe the hair off of other people if we honestly answer innocuous questions like “How are things going?” or “What have you guys been up to lately?”

Dragon breath happens when I talk factually, openly, about the details of our life with Abbie. It throws the innocent questioners into raging rapids without a life jacket when they really just wanted to walk on the sand with me.  It feels cruel, as I watch someone’s face go blank, then fill with pain and sympathy, and then go blank again...they simply don’t know what to do, and I feel responsible for their flailing. 

If you want to really connect with a special needs parent about the realities of her life, it won’t be through small talk, it won’t be through filtering her experiences through your own, and it won’t be all at once.  She’s got to trust you.  It’s hard to have the deepest pain in my life be apparent to friend and stranger alike, as I push Abbie in her wheelchair, so the pieces of my heart that I can protect, I do.  Ferociously.  That means there are very few who know those places, and as I think about it, all of them are special moms, too.

So, the connections we make, while important, rejuvenating, and valuable, also often feel a bit hollow at the core because I cannot truly share my struggles, stresses, hopes, and dreams.  Many times I feel like an observer of “normal life” in groups, not a part of the group.  This is transparent to everyone else, it’s just something I feel, for which I consciously compensate.

So, back to your original question about the looks.  The reason why I cast my gaze down on the days my baskets of challenges and heartaches feel especially heavy is because I cannot carry the bricks that others want to give me when they look at or speak to me.

Most of the bricks come from the Fear Factory, and people don’t even realize they are asking me to carry their brick of fear when they give it to me. 

When they say, “You are so strong.  You are inspirational. I could never do this”, they are actually vocalizing a coded prayer.  “God, please don’t ever make me do this!” Their words don’t have nearly as much to do with me as they do with their own fear of being me one day.  They may feel and express their admiration sincerely, but the root is fear, and the comments are a brick added to my basket.

Some days, when the baskets feel light, and I feel strong, hopeful, and courageous, I can accept the fear bricks with a smile.  It’s not that I am stronger, it’s that they don’t know some of my secrets.  They see a broken little girl in a wheelchair.  They don’t have the special glasses to see the heavenly princess, full of beauty, grace and mystery that I am privileged to push as divine star shine and glitter follow behind us.  They don’t know, and perhaps never will, that words are not necessary for communication, and actually get in the way of the deepest connections.  Abbie and I still “talk” all the time, but through our hearts and our minds.  We are bound in a way I could have never envisioned when she was a chatty two-year-old.  They don’t know what it’s like to have every day that Abbie is healthy and smiling feel like a come-from-behind victory.  And, I don’t think they know the power and depth of loving intensely with a heart enlarged by being smashed into bits.  A perfect heart loves easily and purely.  A broken heart’s love is a complex, multi-colored, defiant choice.  It is unstoppable.

On these days, I assure the brick-giver that, if it were their child, they most certainly could do it, they would do it, and then silently pray they will never have to.  On other days, though, I wonder if they have any idea of what they are truly saying.  Do they think I was chosen for this, Abbie was chosen for this, because I was strong enough to handle it?  No doubt we were chosen, but certainly not on my ability or strength.  Is the answer to the unspoken fear of having to give your own daughter CPR, or caring for a brain injury survivor, or losing a child, to continue to assure one’s self that only  “special moms” have the strength for that.  I wonder if the speaker realizes she’s programming herself for weakness, but that won’t prevent challenges requiring strength.

There’s another kind of brick that appears, and initially feels, very different from those embellished with kindness by well-meaning strangers.  Judgment hurts.  Judgments of the most tragic day of my life, about the worth of my daughter, about my responsibility as a mother are sometimes hurled like cinderblocks through glass.  Some are thoughtless, and not even meant purposefully for me.  Being in a group of moms, each relating in great detail how they are taking precautions with their pools, adding in a story of someone’s child who almost drowned, with requisite chords of horror and superiority in their voices.  I just hold my breath through these, and again tell myself, “they just don’t know.”

But, then, there are other people, “marksmen of vitriol” I call them, who aim directly at my heart, wind up, and fling the brick with all their might, hoping to destroy me to the degree I obviously deserve.  “How could that possibly happen to a child?”  “It’s just unacceptable”  “There ought to be laws, and more severe penalties to prevent things like this”.  And, yes, I’ve had this said to my face, with Abbie present, more than once.  It is like an atomic bomb going off in your soul, when you are a novice.

I no longer am.

So, I realized that their words, as evil and hurtful as they were, were ALSO not about me. 

They were about them, and also came from the Fear Factory.  They also want to assure themselves they will never be me, that their healthy children will never need tracheostomies, suction machines or wheelchairs.  Instead of pleading a lack of strength, as the Kind tribe does, they blame my poor parenting, my lack of awareness and control, and even my flawed being.  I’m the “horrible mother.” This makes me different from, less than them.  This means what happened to my family, my daughter, me....could never happen to them.  It is scary to imagine anything so life-altering happening to your child, but assuaging that fear at the expense of another person is cruel.  Doing it at the expense of a parent fragilized and exposed by having a special needs child is wicked. 

Same factory, same bricks, different transfer methods.  But, both groups are asking to add to my basket, the Malevolent tribe just hopes to bloody me a bit in the process.  This is why, on the days my baskets are blistering my shoulders, I cannot look up.  I just can’t take any more weight.

You can also now understand just how spectacularly blessed we are when those rare people come along who both insist on and know how to take some of our burden out of our baskets.  But, I’ll save those stories for another day...."

To learn more about Tiffany and Abbie go to www.prayforabbie.com.