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-



    

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.

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.

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

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. 

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

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.