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 6^th 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.

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?

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 18^th 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?

My Name is Leah

I often wonder what goes on in the mind of my little girl.  I often wonder.   If she could think, this is what  she just might say:

My name is Leah.   I am a baby.   I don't know where I live but I can tell it's somewhere hot.  My mommy and/or my daddy are always with me.  Sometimes, they love me so tight, I think I might be crushed.   And, I am always getting big slobbery kisses from my sister who also loves me an awful lot.  She always smells so good. My brother on the other hand, likes to pick me up and walk around with me then sit me back down again, then pick me back up again, then move me around again......and I love it.   I sure wish I could laugh because he is so funny.

Sometimes, I try so hard to smile and laugh for them I think it might be easier to hold the moon in my hand.  But I do hold their hearts.   I noticed that my mommy cries sometimes and seems pretty sad about me but I want her to know that I know she loves me and she takes such good care of me.  I sometimes get cold when I am playing on the floor and she always shows up with a warm blanket and cuddles me up real tight.

I don't like to be cold and if anything touches me that gives me shiver, I let them know by letting out a big cry.  This is so they won't do that again.   It really makes me mad.  I don't like to cry but sometimes, it's what you have to do.  *sigh*  I also don't like the water much unless its real warm but then again, not that much.  My mommy keeps trying to put me in the pool and sometimes I let her because she gets real excited when I do something new then I get to see her smile.

My favorite place in the whole wide world is my daddies lap.  I can just curl up under his arm and know that he will always protect me.   He worries about me a lot.  He is scared that I will get hurt or scared or lonely.  But not if I have him.  I love his warm calming voice.  He sleeps with me at night and keeps me cuddled and warm and safe. I notice sometimes that he is gone for a couple of days and that's because he is working hard.   He loves my family a lot and wants to make me all better.  I want to tell him that I am ok.   If only I could tell him that.   I think it would be easier to grab a star and make a wish.

If it's a nice cool day, and not very windy, I like to go for a walk.  Sometimes I can hear the dogs barking and the birds chirping and I sure wish I could find them.   I can see the trees blowing in the wind but sometimes it's just easier to listen.  Everything moves so fast and I get real tuckered trying to keep up.  I don't mind if people hold me either.  I guess Im not shy.

When I get up in the morning I like to smile.  I have saved up all my energy all night long so I can smile at my family.  It might only be one but I try so hard to make it a big one.   They all get so excited and kiss me and hug me and clap for me.  I just giggle inside.

I have these pretty blue eyes....at least that's what everyone seems to say to me.  I haven't seen them but I sure do use them alot.  I try to tell my family and friends that I can see them and I am glad they are there. Sometimes it seems like I can't do the things I want to do and I don't know why.

My mommy tends to dress me up a lot too.  I have these silly bows that go on my head but I don't say anything.   I do look pretty cute in them and every girls gotta have a big bow.  Sometimes though, I would rather just be in a onesie that is nice and cool.   I have noticed they like to change my pants too which I don't really care that much for.  They use something that is really cold on my bottom and it really makes me mad.  Keep my bum bum warm!

We go to a lot of doctors appointments too.  Not my favorite but I play along.   The one I really hate is physical therapy.  The lady is real nice and all but she makes me lay on my tummy and for crying out loud I HATE IT!   It makes me miserable but I know they want me to get stronger.  I sure wish it was that easy.  It's so hard for me to do.  My body just doesn't move like I sure wish it would. They have fun toys they want me to play with and I reach out and try to touch them and they get real excited for me.  I seem to have to go to the doctor a lot but I guess it's because they are so anxious to see what I will do.

I want everyone to not worry about me so much.  I mean really, I have A LOT of people who love me and hold me and give me lots of kisses.  I think with all of that love, I could just about do anything.

My name is Leah.

Her Name Is Leah

I find myself these days trying to relate everything to something.....anything.   Sometimes, I get myself so far off track I have forgotten how I even got there.  I was in a conversation the other day and while its nothing new to be zoned out at times, when this conversation was over, I had no idea not only of what was said but even what the general topic was.  My mind had drifted to Leah.

Leah, this little person who has been in my life now for 9 mo and 8 days.   Little Leah, the little wonder.   We have in the past month been to Children's Mercy in KC twice.   Once for a visit with a neurologist and once for an EEG.  How is it that your life goes from a vocabulary of football, volleyball, homework, supper, tv, and laundry to neurology, therapy, doctors, and disabilities?  It's like we were looking at a map and accidentally flipped the atlas from page 6 to page 26 and couldn't flip back.   What do you do?  You step forward no matter what's in front of you.

So many times, I find myself so uptight because I am trying so hard to figure all this out....and I can't.   Then, I look at Leah.   She day in and day out fights and she doesn't even know it.   She has to work harder at doing anything; at doing everything than anyone else.....and she does it.  I liken the monstrosity of her struggles to that of climbing Mt Everest and she is at the bottom, with no equipment, no protection, no experience. And she climbs.  She climbs everyday.  She might not get anywhere but she does it.  She works harder than anyone I know, not because she wants to, but because she has to.

She is a fighter, a miracle, a blessing.  She has worked harder in her 9 mo than I ever will.  Her name is Leah and tomorrow we're going to climb a mountain.

Four Arms Please!

So I know it's been just a ridiculous amount of time since I have written and really it's not for lack of ideas but actually maybe too many ideas.  I liken it to apples at the grocery store.  I mean really, have you ever taken the time to count the different types of apples you can buy?  Seriously, it's too much for an already confused, overloaded, crazy minded person like myself.  I end up standing there for 20 min only to walk away with nothing!  As is my blog lately.  At the start of this blog, I have four other blogs in process.  Dumb

Anyway, today was one of those, 'I better write so I feel better kind of days' for several reasons.  I hate it when you know someone is upset with you but instead of just telling you why, they ignore you (I may or may not of acted that way a time or two too myself) but really, just let me know so I can fix it!  But, that wasn't the biggest problem of the day.... I made the decsion to take Leah to Wichita!  She had OT, PT, and Speech, which in of itself should have been a big warning but I went in early to shop for my other daughters birthday as well.  All this a day after Leah ran a fever (her first ) all day and has done nothing but cry today although fever free.  

WHAT WAS I THINKING?????

For the love of God, I need more than two arms!  I need an arm to carry the baby, an arm to carry my purse, diaper bag, and can of caffeine, another arm to push the stroller, one more to open the door so my third arm can push the stroller through, or one that is abnormally long to reach into the back seat, over the car seat and long enough to grab the binky and stuff it in the mouth of one screaming, overworked, doesn't feel good baby while my other two arms are busy driving and wiping the tears that have mysteriously began trailing down my cheeks.

Our first stop was the Goddard McDonalds because Leah is screaming in the back seat.  Her face is red, she is pissed, and I haven't had any caffeine all morning.  I proceed to order a burger and an extra large drink, wishing they had a bud light keg on tap but thankful for whatever it was I filled it with.  The child has to be exhausted at this point and wishful thinking envisions a baby that takes her binky and falls fast asleep in her joyful mothers arms.  WRONG AGAIN!

Next stop:  The Mall!   Now, I once again incorrectly label our trip as peaceful. Thinking a nice stroll in the stoller in the cool mall was all she needed.   Oh how I was wrong.   Pretty sure the girls in The Buckle will not be having kids anytime soon.   After about 3 min of browsing and a screaming Leah, I gently smiled at the girl and said we'll be back.  I think the look she gave me was "oh, please don't".

I have always thought it was so nice of the mall people to strategically set so many benches throughout the mall for whomever might need them....you know, the men made to go shopping with their wives who really could care less, the older woman who just needs a rest, or the mother with the screaming baby.   Yeah, I plopped my near to tears butt down on that bench and wished I had a dollar for every person that walked by and stared at us.  Ready to throw in the towel and I see relief.  A friend and her daughter conveniently arrived, just happened to come to the entrance we were sitting at, to the very store I was shopping in, and rescued me.  For 15 minutes, I shopped minus a screaming baby.

Next stop:  Wesley....oh the memories I have of Wesley.   Somehow, Leah miraculously didn't utter one peep on the drive from the mall to Wesley.  NOT ONE!   It was rejuvenating....but it didn't last long.  By the time we strolled to the therapy office, Leah was once again putting on the performance from hell.   The OT lady got her to calm down a little bit but it was shorted lived.  One mom made a comment to me, "Wow, she is really upset"  NO SHIT!  To make a long story short, OT, Speech, and PT rescheduled for another day.

Now, it's been said before that women tend to want to do everything by themselves.   I am one of those not necessarily because I think I am the greatest at it but I guess because I am somewhat of a loaner.  I knew going in that it probably wasn't going to be a productive day, but I did it anyway and I paid the price and sadly, so did my little girl, who is FINALLY after seven hours, sleeping.   And what makes it worse, is I will do it again...I think mothers are designed to punish themselves in mysterious ways.

Whew....anybody got a drink?