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.  

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?

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

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.  

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!