Wednesday, November 7, 2012

Tears are for the Tough

It is a known fact, that I am a face book junkie.  I know it.  I admit it.  It’s the truth and truth be told, I probably need therapy for it.  I love FB.  I love the quotes.  I love the updates.  I love the pictures.  There is something liberating about seeing that most everybody else lives a chaotic stressed dysfunctional life like I do…. A normal life. 
There was something on FB today and probably yesterday and probably four months ago that I liked.   It was a quote from an unknown author about people who appear to be tough, being the ones whom at times need people to say hey it’s ok to be sad, it’s ok to breakdown, it’s ok to be human.
A story:  Saturday, November 3 – Wichita State University
We were invited by Children’s Miracle Network to bring Leah to a fundraising event; a dance marathon.  A twelve hour music infested, activity driven, no sitting, college kid attending event.  At first of course I was hesitant about accepting the invite – you know somewhat like accepting the wheelchair, this was a step in the “We are a special needs family” direction and well, my mind and body, somewhat like running fights it. But we went and there I found myself walking through an aisle of cheering clapping college kids as we are wheeling Leah into the gym complete with a large picture of her big blue eyes.  I have to admit, it was pretty cool.
So we are asked to stand in front of the stage while the other non-wheelchair families take their place on the stage.  Right in front of us are the marathoners…..young pretty hip girls and big tough college guys.   We the only family with a child in a wheelchair, the only family with a child as disabled as Leah, we, the family everybody is looking at. 
We fly through the introductions and so it begins.  The music….. You know, the kind that conjures up emotions.  Dammit…not today.   The story….. You know, the kind that brings you to tears thinking about what you would do if that was your child.   The story was of a little girl who fought and fought to fight off the cancer that took her life recently.  The dramatic heartbreaking story that makes you think about death. 
I did not shed a tear.  It seems as though my shield stood on guard with a sword protecting my heart from all of it… my thoughts of the girl standing before me with bi-colored hair wondering what on earth my 16 year old would think if I walked through the door with a new ‘do like that.  Shed a tear I did not.  That is, until I looked down at my 12 (then 11) yr old son.  My 12 year old tough 6th grader standing in front of these big tall tough college kids…….sobbing.  
He stood there listening to every single word of that story.  He listened with his heart.  He listened with the knowledge that someday, they might be talking about his sister.  He walked over to where Leah was in her daddy’s arms and kissed her on the forehead.   A moment….a proud, heartstring tugging, never forget moment.   For in the moment, this tough kid, didn’t care about how he looked with tears streaming down his face, he appreciated the broken baby sister that he loves with all of his heart.  The baby sister he might not have to kiss someday.   This kid who picks her up and loves on her as if she were going to get up and walk right across the floor any day now.  The kid who believes his life is better for having her in it.  The kid who will someday be devastated when she is not.  This kid whom through his tears taught his momma a little bit of a lesson and brought me to tears. 
I saw a glimpse of a kid, who even though doesn’t want his mother to touch him, hug him, or god forbid kiss him, has a heart of gold.  A kid who walked over to me after the kiss and hugged me for what must have been five minutes.  Kids see things.  Kids feel things.  Kids care.  Kids love.  Kids sometimes need moments to not be so stinking tough.
 I love this tough kid.
And I love his sisters.

Tuesday, October 30, 2012

Officially Official Part 2: Finding Ok

I am. I am a mother. I am a mother of a child. I am a mother of a child in a wheelchair.  I recall a mother whom just a few hours ago was afraid of the changes that were brewing along the path ahead…. A path with no exits, no u-turns, and no stops at ‘Lets stay  and rest for a while’.   A mother for whom two years now has tread water, sometimes sinking, sometimes swimming but a mother who climbed out of the pool today and jumped into a big black hole of despair and landed in the soft hands of ‘ok’.  
I am ok….today, I was ok.  Whatever that is and whatever that means.  Sometimes being ok is a choice, sometimes it is not.   There are people who are always ok, or so they seem.  There are people who are ok because they don’t allow themselves not to be ok.  There are people who are never ok because they don’t admit they aren’t ok.  Then there is me.  Me who spills her guts and lays everything out there no matter the consequences.  Me whom ok is hard to find at times. But today, I found it in the most unlikely of places….a black hole.
I am not ok with any of this ever.  It will never be ok with me that my little girl will never get the opportunities she deserves.  It will never be ok with me that God allowed her to live this way.  None of that will ever be ok with me.  But sometimes you have to find your ok in other things.  The big picture is not ok but this particular page of my Not OK Novel was an easy read.  A piece of cake.  A walk in the park.  Kind of.   I held back sobs and swallowed what felt like pinecones in my throat all afternoon but shed a tear I did not. 
Instead, I did what sometimes is hard for me.  I listened.  I sat back and I listened.  I listened to the straps that locked in place, I listened to the levers that opened and closed, I listened to the allen wrench against the screws that held this lime green piece of machinery together that will put my daughter in motion.  I listened to the sounds that are now a part of my life.  The sounds that will allow me to feed my little girl with a spoon…. The sounds that will allow her to sit up…. The sounds that will give my back a break. The sounds that might just make my life easier or so they say.   The sounds that will, as a dear friend told me today, allow her to see the world from a different perspective, the world she will have to experience through my eyes.
I didn’t choose to be ok today.  I didn’t jump into that black hole telling myself it would be ok.  I jumped not knowing what I would find at the bottom. I don’t know why and I don’t know how but what I found was ok. 

Officially official

For two years, and twelve days, I have dreaded this day.

I remember my fears two years ago;  vans, ramps, bath equipment and wheelchairs.  My fears then that mirror my fears today.  I remember the nurse taking me by the hand and telling me it would happen in phases and to take one step at a time.   I am not taking a step today, I am falling into a big black hole.  One that officially marks me as a special needs mom.  I do not want to be a special needs mom. I am but I don't want to be. I want to wake up from this nightmare that I am living.

Today we get a wheelchair.  Please can somebody pinch me?


Tuesday, October 16, 2012

Two Years and Counting

I sit here today having no idea what possessed me to open up this blog, now untouched for 1 year 2 mo &  12 days.   It could be a number of things I suppose and maybe it really doesn’t matter.  What I do know is that I think about writing in it often.
A Little Leah Girl turns two this week…..October 18th to be exact.  Two years old.  I look back at these two years and it seems at times I have no recollection of having done any of it.  And yet it’s been the longest and hardest two years of my life. 
I don’t know what strength is.   Am I strong because two years ago my daughter was born without a brain and we take care of her?   Am I strong because two years ago, my life was put on a different track headed to who knows where with a stop at Grievers Crossing every other day?  Am I strong because now instead of crying every day, I only cry once a week?  What is strength?  I want to know, because I feel like the weakest person I know.  I am the weakest person I know.
I don’t know what being strong is.  I just know, it’s not me.  I don’t know how to be strong.  I am a mother whose heart was broken two years ago into a million tiny little pieces that cannot be put back together and I have let it define me.  That is not strength.  
I remember a year ago this being an extremely emotional week getting ready to celebrate her first birthday.   I remember hoping a year ago that the second year would be so much better.  I remember New Years Eve setting a resolution or a theme if you will for 2012:   Stress Free ~ Worry Free ~ Happy.  Life is too short to be anything but happy right?  To do anything but celebrate each day?  To do anything be thank God for each and every blessing….even a fractured one….right?   I guess that’s not how I work.
That’s what I wanted to be this year.  I wanted to be happy.   I wanted to be a mom who even though her daughter doesn’t have a brain, could pick her up, squeeze her tight and love her unconditionally.  I wanted to be a mom who could talk about her little girl without bursting into tears.   I wanted to be a mom who could plan her daughters second birthday with gratitude that I had one more year with her.    I wanted that.  I wanted to be that person.  I wanted to be that mom that sent out invitations with a smile on her face and a sparkle in her eye but instead I am dreading a birthday party for her.  I am tearfully dreading it.  I should want to celebrate her life no matter how fractured it is. That’s what strong women do.   I should want to thank god for letting me have had another year with her.  That’s what strong women do. I should want to celebrate her second birthday as if it’s her last.  That’s what strong women do.  I should want to.   So why don’t I?