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.