Thursday, May 19, 2016

Surviving Selfishly; Why I Must Apologize

Friends, I need to apologize.  I know you wont want me to, and will ask me not to, but I have to.  It's the right thing to do.  It feels right to me, and because of that I must.

Having a chronic/life limiting disease such as mitochondrial disease is extremely overwhelming.  It overtakes every single part of your life without you even realizing it.  It slips in slyly like a boa constrictor and slowly squeezes the life out of you.  

With the rapid onset mitochondrial disease you don't have the time to put the oxygen mask on yourself first, so that you can reserve the strength and energy to help those around you cope.  You are constantly grappling at one shoe while the other is falling off.  You are trying to take steps forward whilst being thrust quickly backwards.  It rapidly becomes a situation where most times instead of living you are merely trying to survive, and because of that selfishness becomes a mechanism of survival.  It isn't an excuse.  It is the reality of an unfair situation, and it doesn't feel right, because it isn't.

Good friends make it really easy for you to becomes "necessarily selfish."  They "understand" when you go into hibernation for weeks while you muster up the strength to keep living, even if it means you've missed their important life events.  They don't get upset when you have failed to ask how their days are, even when you have been speaking to them for an hour about your day.  They don't bat an eye when you forget their birthdays, even when you are speaking to them on their birthday.  They don't expect you to reciprocate childcare (nor would they ask you to when they really need it).  Thus the poor habit of a one sided relationship begins.  It's easy to happen even to the best of friends, even when you don't mean for it to happen at all.

Why? Because tragedy is supposed to be temporary.  The amount of one sided care taking and the reception of that level of care is supposed to be short term until you get back on your feet and are able to create a normal life for yourself.  With a disease that is constantly progressing that is nearly impossible.  Your typical is constantly changing, and therefor your loved ones are constantly trying to help you pick up the pieces and move on again.  Mitochondrial disease doesn't just effect you, it effects everyone around you.  It is poisonous.  

So, I apologize, because I have to, whether the contagion that this disease has created is my fault or not. I am profoundly sorry for all of the days that ended before I asked you how you were doing.  I am sorry for all of the times social media had to remind me it was your birthday before I remembered.  I'm sorry for all the days that passed before I responded to your text messages, although I appreciated them immediately.  

Please know I could not get through a single day of this disease without you.  Your efforts never go unnoticed.  Your strength to stick this out with me is nothing short of admirable.  You are a large part of my ability to fight this disease.  Thank you every day for everything you have ever done and ever will do.  

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.


Monday, February 29, 2016

Piece by Piece Part 2; When All the Pieces Fall

I'm not afraid of dying.

I used to be, mortality used to be the driving force of all of my nightmares.  I will never forget at the delicate age of six while watching All Dogs go to Heaven, when my brother laid it on me that when you go to Heaven you don't just get to come back to visit your loved ones left behind.  I remember clinging to my mother's hip so afraid that if I let go, one of us would slip away.  It took me a long, long time to feel like I could let go, but when I finally did, I was better for it.

The truth is we all have limited time on this side of Heaven.  No one knows when their time will come.  Life is fragile, period.  Healthy children experience catastrophic accidents, they develop incurable diseases.  Young adults have bodies that quickly begin to age from diseases that science simply have not caught up with. Humans sometimes suffer and then they die.  Death is everywhere, if you choose to look at it that way; it surrounds us, encompasses us, and if we let it, it can be completely overwhelming.

I believe in miracles.  I believe God chooses to fully heal select few on this side of Heaven.  Why some and not others, we may never know.  I can tell you though, I do not believe with any piece of my heart that it is because He loves some more than others.  I truly believe that just as His miracles, He uses our suffering and unhealed bodies for the greater good as well.  Maybe it just isn't for us to know.  Maybe just not yet anyway.  One day we will all be healed even if not on Earth, and knowing that brings me a huge sense of relief, a sense of calm, the kind of peace I need to keep believing it will all be okay.

The end is only the beginning.  This world we get to live in is just a stepping stone into the beauty that awaits us.  Knowing the glory that sits just a gate away from where I lay blankets me in tranquility when I begin to worry.  I long for the freedom my body will have and the painless future that will come with the new life I will be given.

So, why is talking about dying so hard?

It is hard to not ache for the people I would leave behind.  As I see those four beautiful faces every morning, no matter how much pain I am in, I recognize them as God's little slices of Heaven here  on Earth.  I couldn't imagine a world without them in it, even if it is the most perfect world of them all, one that would give me everything and more.  I need my babies more than I need air to breath. How would it feel to be able to see, but not touch them? I am aware my husband would not be coming with me, even if he held my hand until the very last breath escaped my lips.  Would I urn for him? Would I know time has passed at all?

Sometimes the whole idea is just hard to believe.  No matter how many times you witness it, the heartbreak, the pieces of someone's life shatter to the floor, it is really hard to imagine yourself in a position where it is you.  Humans innately think they are part invincible.  The idea of death is just too surreal.  It is extremely hard to come to terms with something you can't even begin to wrap your mind around.  

You want to believe that you are going to be the one who will beat the odds.  No matter what it is you are facing there is always some kind of success and failure rate.  It is only natural when the failure is death that you would want to be the successor, I mean anything less would be giving up right?

Even when I die, I will have never given up.

It irks me beyond belief when people say that those who have died have "given up," or "given in" to their disease.  I know it is just a commonly used gesture to speak of the newly departed, but it gives an air as if the person who has passed did something wrong, as if they could have done more, if only they had tried a little harder.

I will fight until there is nothing left to give, and even then I will not have given up.  When all the pieces fall around me, and I know that there is nothing left to do, but to give in, I will do just that.  I will leave this world a fighter, a lover, and most importantly a friend, a daughter, a sister, a mother, and a wife, who wanted nothing more than to see the ones she loved give this world everything they've got with the tools God gave them.

No worries though... I've got a lot of fight left in me.

Sunday, February 28, 2016

Piece by Piece

As a young child I used to get caught up into the anxious game of “what ifs.” It was an internal clashing of scenarios that may never happen, but raced in my tiny mind until I nearly panicked; “what if the house caught fire, what if a tornado came, what if we got into a car accident, what if my parents were to die?” My mother would coddle me and promise me that we can only take life a day at a time, sometimes only a breath at a time, and as life unfolded sometimes painfully, I came to realize just this.  As an adult my mother’s words became a constant ringing in my ear, keeping me grounded as life began giving us more lemons than we had time to make lemonade.  It was either take life as it comes piece by piece, or fall apart just as quickly.

As a young child I also had dreams, beautiful dreams.  I wanted to be swept off my feet by my knight and shining armor, have as many children as I could humanly hold, have a respectable career, and live happily ever after.  The day I met my husband, I knew we would build just that, and for the most part we did, even if it were a rougher version of the original story I wrote and rewrote time after time growing up.  It was our kind of perfect.

Over time we would find out our perfect had many fault lines, just like hand blown glass there were weaknesses and frailties that would cause our beautiful to crack.  We did all we could to stop our beautiful picture from crumbling completely.  This became nearly impossible as we found out not one, but two of our babies had a progressive and degenerative life limiting disease with no cure. 

Our play days turned to hospital stays, and our play room turned into a make shift hospital room.  One by one the kids needed more and more interventions, and we watched as the life we planned turn into something we never could have imagined.  We tried our best to keep everything as normal as possible, to maximize and maintain the life we had planned for them.  We refused to crumble, we refused to let the cracks separate us.   We trusted God to take the original picture piece by piece and create a new picture, though different, just as beautiful, and He did.

The foundation beneath us became stronger, and thankfully so, because no sooner did we come out from underneath the quake of the storm did I become sick as well, just like that, quick like the rain on a sunny day, and just as unexpected.  The same disease that my sweet babies battled day by day, now effected my body, piece by piece. 

When the children first became ill, I used to lay my head upon them every night and beg my night time prayers.  I would plead with God to take their sickness from them and lay it onto me.  Although I know they are not healed, and our God does not work on barters, I thank Him every single day that they are up and running and I am stuck in bed.  It feels like a partially answered prayer, even if it isn’t the way things work, believing so brings me solace.

The sicker I have become the harder it has become to keep our beautiful picture whole.  As I sleep the days away with children’s laughter echoing throughout my slumber, my heart cries for the days that I am losing.  All of the missed; bedtime stories, baseball games, homework nights, family dinners, playdates, all the things I used to be the heart of; there are days in which I feel like I am slowly disappearing from the picture all together, piece by piece. 

When I first became ill my body was slowly losing processes I never had to really think about before; eating, breathing, seeing clearly, using the bathroom, sleeping.  I started having trouble taking care of myself in ways I never thought I would.  As a twelve year old child dreaming of my future, I certainly never imagined I would need assistance with bathing at only thirty years old, but I do.  Now I have begun facing things that were not on my radar even a year ago, and I have yet to be able to turn the ugly truth into anything easy enough to even look at.

Recently, I started losing pieces of myself I thought would always be mine, until the very day I left this Earth. It started out subtle, a few memories here or there, a few missed words, things that could be chocked up to stress, illness, nutrition, or anything else I was going through.  Then it became a little more frequent, a little more intense; a few missed hours, forgotten names, momentarily forgetting how to speak.  That quickly turned into visual discrepancies, periods of my eyes not tracking, large lapses in memory, difficulty walking, unintelligible speech, answering inappropriately, delayed processing time, among other issues.

These moments used to take just a little bit of me, and then give it back as quickly as it left.  Now these moments have started taking who I am piece by piece.  I am left with more and more of the neurological deficits and less and less of the mind I used to have.  I am suffering from Stroke Like Episodes, which can occur in Mitochondrial Disease.  I can no longer drive for fear I may have an episode while driving.  Even if I didn’t have an actual stroke, my mind now has trouble processing information it has known for years, like what to do at a stop sign.  It doesn’t always happen, but the fact that it happens at all is not safe. 

I have begun to have trouble doing the things I love.  It takes my mind so long at times to remember what to do with my camera before taking a shot, that I have often missed my opportunity.  Playing music has become difficult as both reading music, finger placement, and keeping a beat has become nearly an impossible feat.  Even typing is sometimes difficult.  My mind knows what it wants to say, but it becomes difficult at times to know what button I need to push to make that letter happen.  I am watching all of the things I love slip away piece by piece.

I long outgrew the game of “what ifs,” and I am glad I did.  I fully trust God with the suffering I endure on this side of Heaven.  Losing myself neurologically piece by piece physically hurts the least of all of my afflictions, but emotionally it hurts the most.  I will continue to take this life a breath at a time, knowing it’s the only way.  I know He can take anything and make it beautiful and I know He will.  

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.