Saturday, March 5, 2016

Wait for Me

"Wait for me!" I called to my daughter as we headed to to bus stop.  Just like that, just like always, she did.  I watched her beautiful honey curls sway in the wind as she waited for me.  Her beauty astounds me as it always has.  I took a moment to take her all in. Suddenly I started to feel uneasy and it didn't take long to figure out why.

For the three years our little girl has been going to school.  I have always walked her in to her classroom, or her to 
her bus stop.  She can't be left completely alone because of her autism, but regardless, I would walk her, I just love that time together.  She has made great strides over the years in gaining independence and safety.  She no longer screams and cries in the street or throws herself on the ground.  She no longer runs around the bus instead of on it, and due to necessity she has a tracking anklet if she ever does wander off.  We have spent years building all the proper steps to create a safe environment for her to exert her independence.  I can say with confidence we are getting there.

This day when I called her to wait for me was different, it was no longer because she couldn't safely cross the street without me, and I knew that, it is because I am no longer able to keep up with the normal stamina of an eight year old, and emotionally I can no longer cross the street without her.

I try really hard not to let my illness get in the way of my children's development.  I never want to hold them back, as my mitochondrial disease progresses it is a constant check and balances to be sure that I am not asking them to be the mature one in our relationship, that I am not depending on them when they should be depending on me.  It is a careful balance, one we do very well with most of the time, but it is difficult especially since two of her siblings are also afflicted with the same disease.

I blinked back tears and she pressed her "I love you" sign on the window of the bus as she rode away.  Boy do I love her.  Like the whipping winds on a warm sunny day that girl fills my soul and keeps my sails afloat.  I pressed the mirrored "I love you" sign against my heart, I could feel the pitter patter that connects us.  

The next morning I got her bundled up and watched her as she took inventory of herself in the mirror.  She looked at me when she was done "Do you have your crutch mommy? Do you need me to help you with your shoes? Do you think you should stay in today, it might be too much, I love when you walk me but maybe you are too sick.  Maybe Miss Emily should do it? Are you sure you will be okay?" My heart broke inside piece by piece as I listened to her beautiful little heart pour out her worries, ones a mother should have for a child,not vice versa.

We stepped out the door.  She skipped up ahead.  As she got to the end of the driveway she methodically placed her hand out waiting for me.  I was still about eight paces behind her taking careful steps with my forearm crutches.  "Come on Mommy, I'm waiting for you." She said with a sweet calm to her voice.

"It's alright love.  Mommy will watch you cross the street.  Just make sure you look for cars." As the words left my lips a smile formed, a mirror of the guilt that I was able to release.

"No, Mommy, I want to cross the street with you.  I like to cross the street with you.  Even though you walk slow, I'm in no hurry."  She put her hand out again and shook it methodically.  She looked back over her shoulder and smiled.  "Now come on, I'm waiting for you."

I took her hand with purpose that day and crossed the street.  We both smiled until the bus rolled up.  From her bus seat she flashed me her "I love you" and her eyes locked with mine.  She didn't have to say a single thing.  I knew right then and there her heart could read between the lines of mine.  No matter what we go through or how much things change my baby girl will always wait for me.




 

Sunday, February 14, 2016

One Thing I Wish We Within the Disability Community Would Stop Doing Today


Every day I turn on my computer I am met with the same thing.  In one form or another someone is presenting a blog aimed at telling people a list of things they should not say to someone who is disabled, or to a parent of a child with disability.  They get passed around quickly, eaten up with that comradery people crave so deeply.  They are haphazardly added to the list of good reads one can easily relate to, but I think they can be more harmful than good and here is why.

As a young woman with multiple disabilities and the mother of several children who also live with multiple disabilities we are no strangers to the off color and sometimes hurtful comments strangers and even friends and loved ones can make unintentionally during conversation.  There have been plenty of times over the years that I have been left in tears from a well-meaning person who just did not know better when they offered me an earful of what they thought was positivity and support.  It is true that people who have not shared similar experiences often miss the mark without even realizing they are saying something that could be potentially damaging to your feelings, and of course it hurts.  It is only natural to want to fix that for the masses and to save someone else in similar shoes from experiencing that same scenario.

Even if I have agreed with all of the items on one of the notorious lists of things not to say, I can only think of one occasion that I have actually shared one with friends.  The particular post was pertaining to grieving parents and it was all down right common sense and words that most of my grieving friends had trouble finding themselves in all of their pain.  It was written with an emotional appeal as to why a grieving parent truthfully could not handle hearing certain clich├ęs and written from a very raw perspective thankfully many will hopefully never have to face.  Many of these lists, however, whether the author has intended for them to or not, have an accusatory undertone and really widen the gap between those with disability and those without.  They often contain a lot of “you” statements and instead of explaining the emotional sentiment behind not being able to hear certain comments, they call the reader out for their mistake and shame them for making it, with their negative undertones. 

Where this becomes the biggest concern to me is the fact that we as a community are trying our best to bridge the gap.  We are always trying to remind others that we are the same despite our disabilities.  We spend our time preaching about how we wish that people would ask questions instead of acting uncomfortable around us, we ask that they make normal human conversation instead of pointing and staring, we plead that they don’t leave our children out of activities that everyone else is invited to.  How are we going to succeed in any of those areas when we are constantly writing open letters containing lists of things they shouldn’t say, or do, and giving them the concern that they need to walk on egg shells around our families? 

I am not in any way saying that I disagree with what these lists are suggesting people don’t say.  For the most part I have agreed with about 75% of them and have been hurt by most of those very statements unintentionally.  My concern is that these types of pieces are setting us back in what we as a community are trying to accomplish.  They are all but demanding people tiptoe around us when we should be allowing them to learn through openly spending time with us and giving them the grace they deserve when a social error is made.  

I have not been disabled my whole life, and there was a point where I was somewhat uncomfortable around people who had disabilities.  It wasn’t because I felt there was anything wrong with those afflicted by disability, but I was very afraid of saying or doing the wrong thing.  I was curious about their differences as well as had a strong desire to befriend them just like anyone else, but I remember a huge anxiety burning deep inside of me that I would say or do something that would hurt their feelings, because I simply didn’t know what to say.  Reading a post such as “Ten Things to Never Say to a Child with Special Needs,” that had inflammatory and sarcastic undertones would not have helped to ease my anxiety at all, it would have caused me to clam up and give up.


Just as powerful as “you” and “I” statements, I feel these posts would be much more effective at getting their point across if they gave examples of what to say or do and not what to avoid.  There are always going to be those no matter what who are going to hurt you without meaning it, and some who just don’t care.  For those who do care, let’s show them we care by not treating them as if they have already done something wrong.  Telling someone not to do something naturally causes people to take a personal inventory and be unnecessarily alarmed that they may have done something to hurt you already, which isn’t fair.  Instead let’s give them the tools they need and the grace they deserve to truly be the friend/ family member you are hoping for.






Saturday, September 26, 2015

Mitochondrial Disease; It Isn't All About Suffering

It is no secret that Mitochondrial Disease has brought a lot of trauma and suffering to our lives, the countless amounts of; hospital stays, ER visits, painful procedures, medications and side effects, interventions, adaptive equipment, medical supplies, doctor and therapy appointments, nursing visits, friends we have lost, the list goes on. 

What we don’t often talk about is the positivity that has resulted because of the hand we have been dealt that we cannot change.  The beautiful people who have entered our world that we would have never met otherwise.  The hand in hand comradery, the touch that says I know how you feel, without having to say a single word at all.  The close knit hearts, woven together, a stitch in time that began the moment the words were uttered “I have mitochondrial disease too.”

The strength and perseverance we must amount to in order to make it just one more day in this world.  The energy that it takes to lift your foot and take just one more step forward.  The close fellowship we have found with our Lord and Savior Jesus Christ who suffered most of all.    The power felt within when your knees hit the ground and you know He is the only one who can get you through to the other side.  The heavy weight lifting from your back, and the feeling of accomplishment when you take that deep breath and know you have made it through just one more trial. 


The closeness of a family who has learned to suffer well together, a family who has learned to pray together.  Though there is very little more heart wrenching then the cries of small children with tear streaked faces yelling “please don’t let her die,” there is also something extremely humbling about their heads bent in prayer, hands chained together praying over their sibling, knowing they can rely on God. 

This disease is cruel, it is destruction, it is heartache, but it is also the building blocks of positivity if you choose to find it.  Would I change it if I could? I would send it straight back to the maker, but the truth is I honestly believe for whatever reason we were meant to carry this burden we were also meant to find some peace with it.  I don’t know who we would be without it.  I do know we would be a family without physical suffering, but we might also be a family without the absolute blessing of the beauty that surrounds us because of this disease as well.













Tuesday, July 21, 2015

What Does Our Daughter's Autism Look Like?

She's at a movie theater, she is sitting next to me, legs folded "cris-cross-applesauce." She keeps her eyes peeled on the screen, pausing every few seconds to scrunch her tiny nose.  "What does despicable mean?"

"It means really bad, please whisper," I say "We are in a movie theater.  It is a quiet place."  She stares intently still, not removing her eyes from the screen.  She rhythmically pulls on the bracelet that surrounds her slender wrist.

"What does villain mean?"

"It means a bad person, remember," I say "We are in a quiet place." I shift in my seat.

She rocks gently back and forth in hers.



We are at the library, a gentleman is there to showcase snakes, a special viewing for children.  Around us are parents and small children of various ages.  Before us is the presenter and aquariums covered with sheets.  My daughter sits in front of me, surrounded by her siblings.  "Does anyone have any questions before I begin?" Several hands rise.

"When are you going to take the sheet off?" She yells.

"You can't shout out," I gently say "You must raise your hand."

"Are there snakes in there?" She hollers over me and the crowd.

I put my finger to my lip.  She looks through everyone as if she is the only one in the room.

Her brother's foot gently brushes the back of her leg. "Stop touching me!" She yells.  "You know I don't like it when you touch me!"

I can feel the stares sinking into the back of me.



We are at the ball field, an earned promise to our children, a game of baseball and a picnic on the field.  Her siblings are laughing and running despite the heat and sweat that is overcoming them; gloved hands, tightly gripped bats, soaring balls.  There are smiles everywhere.

Inside the dugout she sits, alone, book in hand.  Completely content to not participate.  She does not feel left out.  She is partially in her own world, and partially taking in the world around her, trying to grasp how it operates and what feels right to her.  She is learning what parts she wants to own and what parts she wants to discard.  She is figuring out how to be graceful in a setting  that was designed for those less unique than she was created.

It is not easy, it is not comfortable, but she is doing it day by day.  This, is our daughter's autism.






Monday, July 6, 2015

How this Special Needs Momma finds her Peace

They approach her bed, something is fiercely wrong.  Her alarms sound quicker and louder, sounds I have never heard before; noises I cannot connect with the reality that is vastly falling around me. 
I watch her lying there, nearly lifeless, although she must be living, the alarms tell me at least this much is true, so why isn’t she moving? Why isn’t she responding to their shaking, their vigorous rubbing, their claps, their yells.

I stand there completely still, as if I am not there at all.  I now know the truth and it isn’t safe with me.  I have no idea what to do.  I feel useless, afraid.  I close my eyes and try to find my peace.


It’s hard to imagine not having that one place your mind can always turn to; that one security, a place no one can harm you even in plain sight.  The world and all it’s unthinkables cannot touch you there.  The flesh wounds that each day inflicts are healed here.  In this place I am safe.  In this place I find my peace.


It’s 3 A.M. an ominous light peers through the window as I lie awake in a hospital bed.  It outlines everything unfamiliar that surrounds me, ending it’s design at the jarred door.  The hall lights are dimmed, like a drug store that has been closed for the night.  My family is tucked away elsewhere, my kids fast asleep.  I am alone.
 
I am here to rest and recover, but resting I cannot do.  Nothing here is familiar, or mine.  Even the pain inside my body feels foreign.  The blankets that are meant to keep me warm are brittle from years of being bleached and reused.

The IV pumps, forcefully, interrupting my thoughts.  This is not my place.  I close my eyes and try to find my peace.


As I finish my nightly routine making sure all of my children are tucked gently into bed I too find my way to my resting spot.  As I climb in my worries begin falling steadily to the floor.  I roll on my back, the softness of my mattress consumes me.  I exhale deeply, and inhale again.  In this place I am safe.  I close my eyes and try to find my peace. 


I take a look at my daughter.  She has more medical interventions than I have seen most people manage outside the walls of a hospital.  Some days I wonder just how we got here, and could we ever go back? It hurts to think about the choices we made and how different things may have been if we had just done “a” instead of “b” or the reverse.  Thinking like this does not help, it only leads to more pain, a heart that bleeds tears that sting the flesh.  I close my eyes and try to breathe.  My chest feels heavy.  I try again to find my peace.


Night:
You had a rough day.  You cannot go back in time.  Searching for reasons only brings more questions.  Searching for questions, never seems to bring answers.  You have made your choices.  The road you chose to take was a one way road.  It is too far gone now to turn back, just breathe.

Morning:
If you got through yesterday you can get through today.  Put one foot in front of the other.  You can only move forward.  Moving forward can never get you behind.  Go, move, and find your peace.



My day begins and ends with the only place I need to be, immersed in my faith.  It is the pacifying warmth that protects me from a world that is a little too flawed.  In my faith, This is where I move through the pain, despite the pain.  This is where I am safe, this is where I have peace.


Wednesday, June 3, 2015

When the Doctor Told Us We Would Outlive Our Daughter

There are few times in life that I can honestly say I nearly lost all faith; faith in everything, time, logic, even God.  Having no faith is like having no air in your lungs, no blood in your body, no place to go, no reason for anything, simply existing without purpose.  That is what it was like for me the moment a doctor told me in all reality despite some catastrophic accident, or miracle, we would outlive our daughter.

As the air began to refill the room a bit, I glanced over at our then five year old daughter.  She was sleeping on the examination table.  We had driven nearly a half days drive to get to see her specialist, and despite sleeping in the hotel for a full nights rest she was still simply exhausted.  She had ostomy collection bags hanging from different connections in her stomach collecting the drainage that her stomach and intestines could no longer process.  She had IV supplements pumping into her permanently tunneled central line to give her the nutrition her digestive tract could no longer maintain.  She was frail, her stomach was protruded, she was pale, and despite the life threatening sepsis she had just made it through, the chronic liver inflammation she was battling, the bone marrow suppression, the seizures, and difficult to treat infections we knew were ravishing her body and making her weak, it was truly the first time I saw her as ill as the doctor had just described her.  I wanted to be sick.

“How can you be sure?”

“When you have been doing this as long as I have, you just know.  No one's body is meant to carry on like this for the long haul.” she said as empathetically as she possibly could. 

I choked a little, my mouth without any saliva at all. “How long?”

“It’s hard to say.  If she continues down the path she is on now, as rapidly as she is, maybe one to two years at best.”  She looked at me for a moment longer, glanced again at my sweet sleeping girl, and then looked away.

“No, no,” I thought to myself, “There must be some mistake.  It just cannot be my little girl we are talking about.”  The entire conversation felt surreal.  Our doctor’s at home constantly tried to sugar coat everything.  They were always giving us the old “just give her some time,” speech.  I was so jumbled up I didn’t know what to believe.  Then it struck me.  It hit me so hard I nearly crumbled out of my seat; how quickly she had gone from a nearly asymptomatic little girl to a child who needed support for nearly every organ in the short matter of only 2 years.  How could this be happening?

I left that day not with a plan to treat or fix my child, but a paper full of suggestions and accommodations on how to best make her comfortable.  The shift in care left me feeling defeated.  She slept the whole way back to the hotel, while I cried.  The world isn’t supposed to work that way, you aren’t supposed to outlive your children.  You give birth, you raise them, you have grand kids, you help raise them, you get old, your kids help care for you, and sadly one day they bury you, and mourn for you, but that is the way this world is supposed to work.  It is the only fair and just way this world is supposed to work.  You aren’t supposed to bury your babies. 

It has been three years since that fateful appointment, and it took time, but I have regained my faith in; time, logic, and even God, not just because my daughter has lived, but because I need my faith to keep me sailing through this life we are leading.  I have watched too many friends of mine, whose children too have mitochondrial disease, bury their babies outside the proper order of time.  I have fought with the unfairness and illogic nature that comes with that tragedy.  It gouges out your heart and makes your soul bleed in a way I can never fully explain.  


 I can’t help at times to wonder when my little girl will no longer have the strength to fight, but I do my damndest not to think that way, not to live that way, because the only way to keep the life in her years is to allow her to live them, and that is what we intend to do.  Every morning when we wake, we give her life again, to the fullest, until the end. 

Monday, January 26, 2015

Our Little Miracle

We loved you long before we ever knew you.  From those early wishes and hopes for what your untold future would be, to the first beats of your heart and kicks of your feet.  We made plans for you, aspiring deeply to paint a picture hand-over-hand of the future you would have, one as beautiful as the love we felt for you.

We read to you every night as you nestled deep inside my womb, uncertain if you could even hear us, but believing that you could.  As we lifted the words off the page we let them be your story, written by another, but told by our hearts.  We allowed ourselves to think you owned them as if they were meant for you.

We engraved those words upon your baby blanket, so that when you made your entrance into this world we could wrap you in their warmth and familiarity.   We folded you tightly like a package, the visible corner underneath your Heaven-made face read;


           "Gaze at the stars,
             and watch the moon rise.
            Each day there are miracles,
            in front of our eyes.
            Dance to the music,
            and sing like the birds.
            Let stories and books,
            bring the magic of words.
            Enjoy friendship and laughter,
           your whole life through,
            and the love that we feel,
            as we welcome you.
        (My Little Miracle J. Beck and J, Croydon)

          We love you so much!
          Love,
          Mommy and Daddy"

We watched you grow and it was ever clear you marched to the beat of your own drummer.  You did things your own way, in your own time, and within your own expectations.  There was never a dull moment within your presence, lighting up each room you entered like the Fourth of July, all eyes on you, every one else taking a back seat.  There were days we feared you would fly so high you would never come back down.

We worried when they said that the you that was so special and yet so hard to "read" had autism. What would that mean for all the things we wished for you? Would all of our dreams for you now be just out of reach enough to make us ache?

We watch you grow now with this invisible label you wear upon your sleeve, always shedding your layers to reveal what is underneath, the raw, take-all-or-take-nothing you.  You are this amazing force inside a pint sized body, a constant tangle of knots we are trying to undo.  You refuse to be unwound.
 
We have overflowed with joy as you have checked off each of the dreams we had for you one by one without even knowing it.  You just love looking at the stars.  You take in everything like it is art, the sky to you is like a giant canvas, the stars small specks of paint.  Music moves you, your body constantly moving to a silent symphony that plays only for you.  You have loved books since you could hold one.  The first thing we learned you loved to do was count words and letters.  When you were four years old you told me there were twelve-thousand and fifty-two Z's in Daddy's chapter book.  You were so proud of yourself.  Words are definitely your magic, and boy do you love to laugh.  It echoes through our home and down the street.  It is impossible not to laugh with you when you are laughing.

We know you will always be uniquely you and that is just fine.  You have paved the way, so just continue to lead us behind you sweet love.  We didn't even know what we wanted until we got it.  It is funny how life works out that way.  Today I realized my heart couldn't be any more full when you approached me to give me a card you had made.  You told me that you had been reading your baby blanket every day and that you wanted to write me back a letter to tell me how you felt.  Before I even read it I felt my emotions take away my words, no matter what your feelings were, just knowing you were willing and able to share them with me was more than I could ask for.  What it said was far more than anything I could have expected:

"Dear Mommy,
I am really glad that you are my Mommy.
I love you so so much.
No matter where you are I will always love you.
Love,
Me"

Most importantly of all the things we wished for you, we know you feel loved. You my love are our "little miracle."