Tuesday, August 2, 2011

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.

Tuesday, July 26, 2011

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.

Tuesday, July 19, 2011

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?

Thursday, June 16, 2011

Celebrating Quirky

Having established that I am a worry wort and borderline if not full blown psychotic, I find myself trying desperately to have a vision of the bigger picture.   Not a vision of this moment, this situation, this day or even this year but the whole darn thing.

If I were to draw the big picture of the rest of my life, I don't even know what kind of colors I would use or what exactly it is I would draw.   I started thinking about my aura and what colors my aura would give off.  HA HA HA  It's stated that your aura is surpressed by stress, anxiety, fear or any other negative thought.  Yea, you can imagine what my picture would look like.

When I look into the future, what I hope for and what I feel at this time aren't even in the realm of alike.  It's different and the lesson I am trying to teach myself is that different is ok.  I had a conversation with an awesome person at lunch today and what she said nearly brought tears to my eyes.  Now, sobbing in Subway over my footlong ham on Italian bread is not cool. I wanted so bad to shed a little tear because a light bulb had gone off in my head and let's face it, that's rare.

She said something like this:   What I love about all of us is that we all have some element of different.  We all have our quirkiness.

Why wouldn't we want to be quirky?  Quirky is distinguishable.  Quirky is daring.  Some of us are late, some of us are clumsy, some of us are goofy, some of us are clueless, some of us are daydreamers, some of us are outspoken, some of us have goofy hair, goofy clothes, and goofy jokes. Some of us are well different.  I not only want to recognize someone's quirky, I want to appreciate it.  I want to make them feel like their quirkiness is as normal as the smile on their face...Different?  Absolutely   Ok?  You bet

My Taylor wears mismatched clothes and socks and doesn't care one bit....I LOVE that about her.   My Logan is a space cadet but would jump right up to help someone....I LOVE that about him.  My Leah is teaching me lessons I never wanted to learn......I LOVE that about her.

My life is different than a year ago.....but it's ok.   My future is different than a year ago.....but it's ok.  My picture will be quirky and beautiful and I'm going to paint it with fun vibrant hopeful colors!  

What's your quirky?

Monday, June 6, 2011

Releasing the Hippos

Often times I find myself holding my breath....my shoulders tightened jaw clenched.   I literally have to remind myself to take a deep breath, exhale, and relax.  Let it go.  Impossible for me to do for any healthy length of time.   If I am not worrying about something, it isn't a normal day.

Isn't it a mothers job to worry?  Well maybe I just tell myself that to seem normal although Im not sure what normal is anymore except that I know it's not me.   I am weird.  I admit it.  I AM WEIRD!

I worry about odd things.  There is the strange unlikely events like the hippopotamus exhibit at the zoo.   I have this terrible fear of one of my kids falling into the hippopotamus pit at the zoo.  I mean really, who worries about that?  ME....when someone merely mentions the zoo, anxiety in the pit of my stomach arises and visions of jumping into the hippo pool to save my child cripple me....I can play it out from beginning to end.  Horrifying....Weird.

Another odd fear of mine is being squished by a huge enormous object like a dump truck or an airplane.  I can't tell you the nightmares I have had about this and really, I would have a better chance of landing a triple axle on ice skates.  Weird.

Yes, I am weird, probably even bizarre at times.  I have jumped to conclusions, made assumptions, and ruined friendships over my bizarre behavior but I have to say, it was all constructed with good intentions that ended with bad results. I have been suffocating in saddness.  I have been suffocating in bitterness.  I am suffocating in worry.

Worry is a constant in my life and probably every one else's life too.  It's what we, as compassionate human beings do.  We worry about things we can't control, things we can, things that haven't happened, and things that happened years ago.

I worry about my kids, their friends, their grades, their activities.  I worry about my relationships....I don't do intimate friendships well and really really want to.  I worry about paying bills, and sending my kids to college, keeping my house.  I worry about the concrete that's broken in our driveway, the trampoline that is torn, the pool that needs cleaned.  I worry about my marriage and my faith. It's something constantly.  We, all of us, have a lot to take care of.....a lot to worry about.  But worrying about things you can't control is a challenge to overcome.  What it is, is insane.

I worried about starting this because I would eventually like my exercise plans, stop doing it.....let's see here, it has been three weeks since I have blogged.  Damn.  I worried what people would think of my thoughts...all honest and not completely shared because there again, I worry.   But have shared more than I have ever thought I could.   I needed to find a way to exhale. I needed to find a way to believe that although my life is weird, it is ok. This blog is my exhale.  It's my relief.  It's how I can leave my worries behind so I can face tomorrow.  You see,  I have some very important things to do tomorrow.

I am going to play pat-a-cake with Leah even if she can't clap.  I am going to teach her This Little Piggy even if she can't giggle.  I am going to put her in the pool even if she can't swim.  I am going to read her a book even if she can't understand it.  We are going to sit outside and listen to the birds even if she cant hear them.   I am going to take her to the ball game even if she can't cheer.   I am going to kiss her wether she can feel it or not.  I am going to love her to pieces even if she doesn't know it.  I am not only going to love her for the rest of her life....I'm going to love her for the rest of mine.

For tomorrow, I am going to lay the fears and worries aside in a box, cover them in tissue paper and store them away under the bed to be retrieved another day.

Today, I am releasing the hippos.......I am exhaling......I am healing.      

Thursday, May 19, 2011

Faith ~ Hope ~ Love

So today I'm talking about Hope.....I'm skipping over Faith for now.  I know, I know, the rapture is a very short 48 hours away so that probably isn't wise on my part.  But at some point I'll come back to it.

I say I'll come back to it because I do hope that I don't always feel the way I do now about this whole situation.   I hope that at some point, I can look back and know that I learned something and became all the better for it.   I hope for that.....I know I have a lot of work to do but I hope that someday, and someday soon it's really really ok.

But there is also something else I hope for:

I hope in her dreams her baby blues can know the beauty of a pink Gerbera daisy, a storm cloud full of energy, the sun setting over the lake.  

I hope in her dreams her feet can feel the lush green grass, her toes the cool wet sand.  

I hope in her dreams her feet walk a mile and run a marathon.

I hope in her dreams she makes it to the Statue of Liberty, the Grand Canyon, and the Washington Monument.

I hope in her dreams, she bates a hook with a dirty worm, and squeals with delight as she catches a fish.

I hope in her dreams, she runs down the court and makes a last second shot, hits a home run, and serves an ace.

I hope in her dreams she writes a poem, wins a spelling bee, and enjoys a great book.

I hope in her dreams her hands pet a dog, touch a giraffe, and hold a baby chick.

I hope in her dreams, she sees the Wizard of Oz, Mickey Mouse, and Shamu.

I hope in her dreams, she sings the National Anthem, Mony Mony, and How Great Thou Art.

I hope in her dreams, she feels the warmth of a touch, the excitement of a kiss, the safety of a hug.

I hope in her dreams, she jumps off the diving board, rides in a boat, and swims like a fish.

I hope in her dreams, she shops with her friends, pierces her ears, and buys bright red lipstick.

I hope in her dreams, she tastes a hot dog, rides a bike, and eats an ice cream cone.

I hope in her dreams, she rides a roller coaster, eats cotton candy, and sucks on a lollipop.

I hope in her dreams, she ice skates, and high jumps, and does the limbo on roller skates.

I hope in her dreams, she can smell a rose, pick a dandelion, and jump on a trampoline.

I hope in her dreams, she walks down the aisle in a beautiful white dress.

I hope in her dreams she holds her own sweet bundle of joy.

I hope in her dreams, she knows how much she is loved.

I hope in her dreams she:

Dances like nobody's watching,
Loves like she'll never be hurt,
Sings like there's nobody listening
And lives like it's heaven on earth.
        -William W. Purkey-



    

Monday, May 16, 2011

Got mail?

I love to get my mail.   It's seems to be the highlight of my day.   Yeah, I know, it's pretty pathetic.   I can't wait to get home and make the 22 step jaunt to my mail box to see what is in that little black box. 

Today was no different except for the white envelope that I had completely forgotten was coming.  One of those surprise mailings that totally sinks your day but this time it wasn't an unexpected bill or property taxes.  It was the envelope containing Leah's medical records.   My heart sunk because I knew on this beautiful day, that hadn't so far produced any tears, I would have to open it up and read it.  I can't for the life of me put gratification off.  Instant gratification is a necessity for me even it means I have to gnaw on my big toe for while or throw myself into an emotional washer on high agitate cycle.   Front to back....cover to cover.....word by word I read it and I sobbed.

It wasn't anything new, just reality slapping me in the face and it hurt.  And I read it again and again hoping I had missed somewhere in there where it said what caused this.   I hadn't.  You see, I tend to believe that if there was a reason, or something to blame it on, that somehow, I could accept what has happened.  That if there was something I could point to, I would automatically from this day forward, love my life. I didn't.

I remember laying in my hospital bed before the c-section, and the doctor was telling me what they had suspected happened.  Probably a virus, a stroke,  or a result of cocaine use.   I believe with the mention of cocaine use, I choked, and started laughing because he was dead serious.  He looked at me like I was the drug whore of Cheney.  Just for the record, I assure you, it wasn't cocaine use that caused this....I wouldn't even know where to buy cocaine if for some reason I really felt the need to go there but I don't.

They knew at this point that there was a feto-maternal hemorrhage which means Leah and I had a blood exchange and she was very anemic which means she wasn't getting adequate oxygen levels in her blood traveling to her brain or throughout her body.  Your kidneys, heart, liver etc can operate at a decreased level without long term damage.....the brain cannot.   After 3 min without oxygen, your brain cells begin to die and they don't regenerate like kidney or liver cells.  I was tested for a gammate of viruses and all were negative.   I'm sure they also tested me for drug use but apparently that was negative too because I was never escorted out of the hospital to the local jail either.

To this day, we have no idea what happened.   It is very unsettling to me because I want to know.  Was it the fact that I was 37 yrs old.....was it the fact that I had taken ibuprofen instead of Tylenol (at the knowledge of my dr), was it that I ate a piece of sashimi tuna before I realized I wasn't supposed to do that?   Was there something I could have done different...should I have, because of my age, insisted on more sonograms?   I don't know.  I want to know.  I want to go back to July when our sonogram showed a healthy thriving little girl and do it differently....something....everything. I want a reason.

I know I will never know.  I know I will never stop wondering.  I don't know if it was my fault or not, but I do know it wasn't anyone else's.  I've always said, I do know one thing.... I don't know enough.






Tuesday, May 10, 2011

Humor....It does a body good

Sometimes, you have to laugh just so you won't cry.  And sometimes you have to laugh while you are crying.  And sometimes, you just have to laugh.

Humor comes at the funniest times and from moments that don't really seem to funny yet somehow it appears when you need it most.

It's becoming very anxiety ridden for me to take Leah out in public.....at least around people that aren't aware of her situation.   So I was in Walmart the other day with her and sure enough as lots of people do, these two woman walked by, stopped, and cooed over Leah, her cute dress, shoes, and bow all the while my mind is begging them not to stay too long.....please don't notice that she doesn't smile.....please don't notice that something isn't quite right.....please for God sake don't ask me any questions about her.

And I can tell it's coming.  My protective superman jumps in and attempts to strategically maneuver the cart away from Busy Body 1 and Nosy Parker 2.....to no avail.

"Oooh look at your baby she is a doll.   (These statements I love....tell me how sweet she is....how pretty her blue eyes are.....or how cute her outfit is......tell me tell me tell me)  But it didn't stop there.   They proceeded to really look her over and start chatting with each other as if I didn't know that Leah wasn't normal.  Like I hadn't noticed that she doesn't smile, coo, or move around like other 6 mo olds.  So as my stomach is turning in knots, my heart rate a throb, I realize whats coming next.  "I noticed your baby isn't smiling...wow, she must just be really tired huh?  Her eyes do look pretty sleepy (I get this statement a lot anyway)  So in all my glory I said it.   I looked them in the eye and I said with a big smile on my face:  Yeah, you are right.  She was born 10 weeks early and she doesn't have a brain.  And it happened...my chance to escape opened right up as they started stumbling over their words and backing away. Satisfaction building itself a little home in my body.  Little miss Leah and I made our way to the towel section where I stood with what must of been the biggest smile on my face in a long time.   The look on those women's faces was priceless.  The kind of priceless that I will remember forever.   I picked Leah up and kissed her lovely fat squishy cheeks and laughed and my thought simply this:  It's going to be ok.

I leave you today with this:  Don't ask people you don't know, questions about their babies.  Don't ask them, how old they are, is she good, does she sleep well, etc etc.   Just don't do it.  I beg of you, simply say little things like, your baby is sweet....your baby is a doll.....love her bow....love those fat cheeks....and walk on.  It's not something I've ever seen in an etiquette book (oh yeah, I don't read etiquette books) but I'm beginning to think I need to write one.   And, it's not something I would have ever recognized myself if I weren't in this position.  But I can tell you from the bottom of my heart, don't ask people questions you don't know.... for families like us, you open a can of painful.


*Note:  This doesn't mean you can't ask me any questions.  I don't mind people I know asking about Leah and you can ask me anything.  I will answer you honestly.  Seems, I don't come with a filter.

Saturday, May 7, 2011

It is what it is

Sometimes, it happens..... Life opens up and takes a big ol shit on your head. After having my job stripped from me this week,  I have now turned into that person we have all talked about... HER!...."I saw her in the grocery store today and she seemed pretty good" "I visited with her last night and she is a mess"  Yep that's me.   I'm the dreaded HER.  The one that is guaranteed to break down at any moment and if your lucky, you'll have a front row seat!

 Ok so maybe people aren't talking about me but it feels that way because let's face it, things just aren't going our way and the light at the end of the tunnel is miles and miles down the road and getting farther away. Its the dream that puts you on the end of a road and the farther you look, the longer it stretches and there's only one way to get to the other end.

I want to think that surely this is one of the moments in time when you look back and say you were all the better for it.  That it can't get much worse but then again.......its me we are talking about.  I am the one that wouldn't win at bingo if I was the only one playing.   Yep, I'm back in my pool but this pool is getting very cold and I hate cold.
  
 10/10/10.....a marathon.  No, I didn't run it, that is comical in itself, but I was there with a group of friends cheering on another group of friends.  These are the friends who have turned around and decided to run a marathon with me.  The friends who check in with me throughout the day to make sure I haven't collapsed into a pile of pitiful on the floor.  The friends who invite me to lunch to get me off my 3x3 sofa cushion.   The friends who spend Friday nights at my house who don't need to talk about the pile of shit on top of my head.  The friends who ignore the stinch but sift through it when I need them to.   The friends who make me laugh when I want to cry and let me cry when I need to laugh.  The ones who remind me:  It is what it is.  

Like Sally Field says in Steel Magnolias:    Life goes on


Monday, April 25, 2011

The Sweet Smell of Roses



I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself.
~D.H. Lawrence~
This was a 'wake up in the middle of the night' I have to find this poem moment.   I'm always amazed at what my mind generates at 2:30 in the morning and when this popped into focus, I
had to find it.  
You see, I could drown in my own pool of pity on any given day.....I can 
throw THE best pity parties around complete with Kleenex, wine, and my sofa.  Excuse me for a minute while I climb out of the pity pool and dry myself off. 
Being grateful is important......Grateful for anything.....grateful for something.  Remember the 
whole Oprah and 'the greatest gift she ever received was starting a gratitude journal' show?   I remember it and thought briefly back then about giving it a shot and like most everything else I've started, it ended after a couple of days.  But, I am realizing one of the biggest challenges, when you are in a tough situation is stopping and 'smelling the roses'.  
Yep, it's a cliche.  Yep, it's annoying.   Yep, it's true.
For today, I'm going to smell the roses.   Even if it's only during the time it takes me to write
this blog.  For it's only through picking the roses that you can shed the thorns. (Yes Megan, I
agree that last statement was on the mushy gushy side)
When Leah was born and diagnosed as having pvl (periventricular leukomalcia) which is the 
initial diagnosis for the cystic changes to her brain, the neurologist charted everyday to 
'monitor for seizures'.   They full expected her to have seizures.   To this day, she hasn't had 
even one.  For that I am grateful.
When Leah was born, she did develop hydrocephalus and could again (different than her
hydranencephaly) and we were told she would need a shunt to fix it....hydrocephalus doesn't usually go away on it's own.  We elected not to do the shunt, and within three days, it was 
gone and she hasn't needed a shunt yet.  For that I am grateful.
When Leah was born, she was on a feeding tube and the doctors fully expected her to go 
home on a feeding tube.  She started taking a bottle and didn't look back.  She might very well need a feeding buttom some day but for now she eats very well on her own.   For that I am
grateful.
When Leah was born, we were told she could be blind and deaf.  Her hearing is near perfect and she can see.  
She tracks objects and follows us around the room and sometimes turns her head to my voice.  For that I am 
grateful.
Shortly after Leah was born, she started developing adducted thumbs....a sign of neurological damage.  However, after a few days she stopped.  Today her hands are very loose and sweet and perfect.   For that I am grateful.
After Leah was born, the doctors told us her muscles would probably start tightening up within a couple of months.  As of today, her body hasn't done that.  For that I am grateful.
Taylor and Logan squeeze on her and talk to her, and kiss on her as they would anyway.   For that I am grateful.
I don't want to be so caught up in my self pity that I don't notice her smile through those big 
blue eyes, her love in that squeezable body, the spirit that lives in her heart.
I hope she knows who we are and I hope she knows how much she is loved.
What were you grateful for today?  Really really grateful for. 
 

Saturday, April 23, 2011

A Little Leah

Promise me you'll always remember you're braver than you believe, stronger than you seem, and smarter than you think." ~A.A. Milne...Christopher Robin to Winnie the Pooh










Wednesday, April 20, 2011

Pessimistic? Optimistic? Realistic?




I admire or maybe even envy those who are eternal optimists...or maybe not.  Optimism isn't my thing.   My guess is that most people would categorize me as pessimisitc....you know, glass half empty blah blah blah.   Yes, I have all the signs of pessimism written all over me.....gray hair, wrinkles, irritibility etc.   I am more pessimisitc than optimistic for sure but I prefer to call it something else....realistic.

 For me there is no need to pretend something is what it isn't for the sake of feeling better.  Because it's only temporary.....like the sugar high from a white chocolate mocha.   You see, I have a fear of disappoinment.   That slide from one prediction to a disappointing ending is very unsettling to me....somewhat like stepping in dog shit on your way to church.  I hate it and I don't handle it well so why put myself in a postition to be disappointed?  I don't understand it.  Kind of reminds me  of being politically correct....really?  What's the point?  

Reaslism to me is acceptance.   I have accepted the fact that my daughter doesn't have a brain.   I have accepted that.....I just don't like it.   I'm not being negative about her future, I'm being honest....I'm being real.  You can't count on miracles, just like you can't count on the lottery when broke.  I know what raising a special needs child entails. She will be with us for as long as she lives.  I know what it means for my other kids....sacrifices they shouldn't have to make.  I know what it means for our finances....most families go bankrupt.  I know what it means for our marriage....most end in divorce.  I know what it means for my faith.....what little I have left.  But most importantly, I know what it means for Leah.

There was little boy in the NICU next to Leah who had been there since July and was still there when we left in November and I kept thinking why keep putting this little boy through this.  He was on a vent and had been since birth.   His mother said to me, "I don't care what obstacles he will have the rest of his life, he is alive and I can't deal with letting him go." He will be alive but he will never live.  It isn't about being alive, it's about living.

 Im real because it's real.  I get it that the mother who has lost her child thinks I'm selfish in my thoughts because I still have mine. I get it that people think I am going about this in the wrong way instead of praising God and trusting in his 'plan'.....I'm not into plans.  There are times in your life when you are forced to revisit long standing beliefs or ideals that you've never really had to think about.... really seriously think about.  

We love our little girl and it's about what's real and always what's best for her.  

Sunday, April 17, 2011

Fidelity to the Model

As I update today, I am one day shy of 6 mo since Oct 18th, 2010 and I am still grieving.  I am grieving  about our situation. I call it a situation because that's what I feel like I am in. Like a puzzle to solve or a hole to climb out of.   This is no longer my life, it's my situation.  Its like a hypothetical question you have to answer and there is no an good answer yet its reality.

 I have realized that too many times in the past, in all my wisdom or ignorance I had decided when someone else needs to get over their own situation.   You know the conversations about the mother who doesn't seem to be coping with her child's death, the husband who can't accept his wife's cancer diagnosis, the spouse who can't deal with being alone.  

I had a conversation a while back with someone that said I just needed to let go of my heartache over Leah's life and move on as if she was normal.   Normal?   Normal?   You want me to act like this is normal?   Normal is seeing her smile for the first time, or seeing her reach for a toy, or experiencing the joyous sound of a coo.   She has yet to smile, she has yet to play, she has yet to coo and her beautiful blue eyes melt my heart.

The definition of grief is the emotional suffering we feel after a loss of some kind.  There is a grieving process.  It's supposed to go like this:  denial/isolation, anger, bargaining, depression, acceptance.   On any given day, I am one of those.  I have been all of those.   I want to be none of those.  

I often wonder if there is a lesson in all of this that I am supposed to be grasping on to?  Maybe I didn't appreciate the milestones my others kids have reached.....maybe I didn't appreciate them enough simply for who they were....maybe I have worried too much about things that don't matter.  You see with Leah, I'll never have to worry about what birthday parties she gets invited too, how often she sits on the bench, how may friends she has, how many awards she gets in school, or wiping her tears from a broken heart.   She will never go to birthday parties, she will never have friends, she will never play sports, she will never go to school, she will never fall in love.

Yes I am grieving.  Yes I am angry.  Yes I am mourning her life and ours.  No I don't care when you think I should get over it.  If the model is correct, I have another 6 mo.

Did you appreciate your life today?

Wednesday, April 13, 2011

The NICU



It's been said before that it's not the doctors that run a hospital, it's the nurses and we had some wonderful nurses.  Now, that's not to say there weren't a couple that didn't irritate the crap out of me that I wanted to at  one time or another verbally vomit on, and really just one that I didn't jive with. And, WE DIDN'T JIVE.   I really try not to be a nasty person but it does creep up on me at times and when it does, it's usually not pretty as every thought I have spills out onto the floor in a pile of not so nice adjectives.  Funny how we never had that nurse again! :-)

However, we were extremely blessed with three nurses that I can't imagine being any better at what they do.   These unsung heroes have a tough job.  These babies in the NICU are tiny, premature, sometimes unhealthy creatures, and the nurses handle them like full grown children.   Tubes, iv's, procedures, you name it, they have it covered and they know what they are doing.   If someone messes with those babies, you better be ready to deal with the nurse because those are their babies and they take ownership of them as if they were their own.   They loved my little girl and even asked to be with her every shift they worked.  When you have to go home at night, knowing there is someone there that you have developed a relationship with is beyond the word of comfort.  Melissa, Sharlene, & Sarah....THANK YOU!

I remember always having the feeling that I was in a basement.  When referring to the NICU, I would always say, let's go down to the NICU....if we were in the NICU I would say, let's go up to the cafeteria.   The NICU is on the 2nd floor, not in the basement.   It was dark, it was unusually warm, it was loud, it was busy,  it was silencing, and it was lonely all at the same time.

What struck me funny were the comments from the nurses and doctors referring to the time we spent with Leah at the hospital.   Where else would I be?  But looking around, we were the only parents who spent everyday with our baby.  A lesson learned:  Never criticize how someone deals with a situation in their lives.  I felt the need to be there....I didn't care where someone else thought I should be because truth be known, I didn't want to be there, yet I wanted to be there, I wanted to be at home, I wanted to be with my other kids, I wanted to fix dinner, I wanted to get up and go to work, I wanted to be pregnant and looking forward to Christmas with a new healthy baby girl.

I remember telling someone in the NICU that I felt as if God had picked me up and set me down in a forest and told me to find my way home.   I don't know how I got here and I don't want to be here, this isn't the life I wanted, I don't know where I am going but I know that I am still not 'home'.....maybe someday

Sunday, April 10, 2011

Little Leah cont

Still the day of delivery:  Mon Oct 18th

So the talk at this point was of blood transfusions and a flight to K.C. and what seemed to me to be crazy stuff.  I was terrified and confused and my saving grace were phone calls to Matt, my cousin, friend, and an OB.  His words were the hot cup of tea at the end of a stressful day.....calming and reassuring even though, (and I didn't know this til much later) he was extremely concerned.

Long about 6:30/7:00 I was allowed to eat finally.   I had been given pitocin to induce contractions to see if Leah could handle  a trip to KC and in utero blood transfusions.  She passed with flying colors and arrangements were being made.   My thoughts were with my other two kids and how panicked and worried they would be and how leaving them was breaking my heart.   What I wouldn't give to be home.

Supper was so good well, good for hospital food or good because I hadn't eaten since 7 am and I was feeling a bit better thinking this situation was going to work out.  We would fix the problem and our little girl would be fine.  How wrong I was because shortly after dinner, her heart rate dropped  and within minutes, the faucet of tears were flowing and my bed was racing down the hall.  My thoughts:  it's way to early for her to be born and where is Shane....left in the room and hollering down the hall that he loved me.   He told me later this was one of the loneliest/scariest times in his life. So what do you do when you are in this situation?  You call Matt and call Matt he did....over and over.  Thank God for Matt.

7:52 pm Leah Avery Overlees was born and she was in bad shape.    Shane would later share with me that they took him to her bedside and said we would need to make a decision about her life.  However, because I had eaten right before delivery they had to put me under for the c-section and I would remain 'out of it' until about 2 am and Shane hadn't felt like he could make a decision about her without me.   At 2 am they wheeled me down to see her and all I remember saying is 'She is moving....she is finally moving' but I had NO idea what it took to get her to that point.  On the way back to the room, I spotted a dollar bill face side up and had the most awesome feeling that everything was going to be ok.  I couldn't have been more wrong.

Over the next 24-48 hours she rocked!  She did so well, the drs were calling her a miracle....she was off the vent in no time and breathing well and soon off oxygen.   He neonatologist called her the 'kick ass baby'.

Five days out:   things weren't getting worse but reality was setting in.   The neurologist had yet to speak to us and the nurses were noticing things about Leah that weren't quite right.  We insisted on a meeting with the neurologist and were starting to figure things out.   This was also the first night we had to leave the hospital without her and my heart was broken.  

Day six, the dr ordered a ct scan and an MRI and usually an MRI is only done if the ct scan is abnormal and I believe the chart said severely abnormal ct results.   And the MRI results were even worse.  We were devastated and I can't recall EVER in my 37 years feeling the way I felt that night.  We had been so hopeful and so impressed with her recovery and the first several days I was afraid they were going to call me and tell me she didn't make it from then on I was afraid they wouldn't.  A harsh reality....

Someone asked me the other day about winning the lottery and what I would do with it and how exciting it would be......for me it's simple:     I could win all the money in the world, and I still wouldn't be able to buy my daughter a new brain.  

Wednesday, April 6, 2011

Why the blog?

This is my first attempt at blogging.  It's never much interested me probably because once you start it, it's pretty pointless unless you keep blogging.  As a self-admitted commitment phobe, the thought of starting this frightens me.  However, this is the least of my worries.

My thought is this:   Why not let everyone I know and care about, know about Leah and her life. I know people wonder exactly what the problem is and how all this transpired so I'm going to tell you. And, because I no longer know how to answer the questions:  How is she doing or Is she doing ok?  She will never be ok.

You see, Leah is special....she is a 1 in 10,000 kind of special.   Little Miss Leah has what's called  Hydranencephaly which occurs in 1 in 10,000 births.   When you look this up, you won't find a ton of information and what you do find, well......

Our little girl came to be with us 10 weeks early on October 18th, 2010 via emergency c-section.   I had noticed for about 18 hours that she hadn't moved which was very unusual for her active little self throughout my pregnancy.   Shane and I decided a trip to the doctor couldn't hurt and honestly we weren't too worried at this point.  Dr. Brown found the heartbeat right away...it was strong and very normal.  Still no movement so we scheduled a sonogram down the street at Wesley Medical Center for that afternoon or we could come back in the next day.....
                   Hind sight's 20/20:  The decision to wait would have changed everything.

So off we went for a sono very curious but at this point relieved since the heartbeat was good.   I have lots of respect for dr's and nurses and techs and really, anyone working in the medical field or anyone working period.   But, they do irritate me at times.....this is one of those times.

 I am not stupid.....maybe not smart either but I know when something isn't going right and within minutes, I knew the sono tech knew that something was very very wrong.   It's one of those gut sinking, frustrating times when someone knows something about you and won't say a gosh darn thing no matter how many questions you ask.  You know, 'the last to know everything' feeling.  Things were bad.....It was 'they are brining people in the room to see the sono'  kind of bad.   The silence was deafening and sickening and the tears were flowing.  I remember thinking, "How did I get here....what are we doing here.....how did this happen?"

My OB called soon after asking to speak to me personally and his words were simply this......things look really bad and I am going to need lots of help.   So off we went to high  risk OB for another sono and another "I'm sorry, I cant tell you anything" episode.  Really?... cuz I already know something is very wrong so tell me you........... I didnt really go there but a volcano of words were making their way dangerously close to my tongue.  I remember laying there staring at the cabinet doors wondering if they were going to open up and spill their secrets.  In comes the OB and simply says your baby is severely anemic and the blood flow is very fast.  She also has fluid around her abdomen and in her lungs.  What does this mean?   Her answer:  she could die.
                  Hind sight's 20/20:  Why didnt I ask what this meant for her brain.....This haunts me to this                  day.

Until then.......

*NOTE:  Hydranencephaly is not the same thing as hydrocephaly which is more common and very different.

 *If you want more information on Hydranencephaly go to:
www.ninds.nih.gov/disorders/hydranencephaly/hydranencephaly.htm

Look for more updates soon!