3 years

It's been 3 years since I first looked at your beautiful face.  Your beautiful little chubby cheeks and full head of hair.  I remember seeing the blond streak in your dark hair and every one saying that you came out with highlights.  That I was gonna have my hands full because you were already being picky about your hair.  HA!  There were sooo right!  I remember bringing you home and being so worried about what could happen.  Little did I know then that life was going to through us so many curve balls.  But I want you to know that not a single one of those "curve balls" define who you will be or how amazing you are.

We have learned so much about you in these last 3 years.  Some of them unexpected and a little bit scary but I want you to know that in the future when I look back on your childhood THESE are the things I will remember most about you:

You hate mashed potatoes...but you love french fries!
You have the most beautifully long and gorgeous hair that most women would kill for!
You smile with your whole being!
You love your blankies just like I did when I was a little girl.
When you take my hand and lead me places my heart melts.
I LOVE giving you baths because I've never seen you happier than when your in the water!
You are soooo tall and that's the first thing people mention after they say how beautiful your hair is!
I love how you smile bashfully and giggle when we clap and praise you for accomplishing something!
I love that you love Olivia the pig, because secretly I love her too!
Feeling you snuggle against me when we nap is one of my favorite things in the world!
(Even when you start snoring just like your daddy:)
Though you are leery of the dogs, you are still so very gentle with them and they love you for that!
I love that if your upset we can just go sit on the swing outside and you calm right down.
I love the little squeals, grunts, and coos that you make.
I admire your stubborn independence and hope you never loose it.
You HATE shoes...and LOATHE socks.
I love that you look like your daddy, so I see him every time I look at you.
You love grapes!
You love Bob Marley, and I promise you hes right when he says "Every little thing's gonna be alright."



There are so many more things that I can say about what makes you such an awesome little girl.  But I think I said it best last May when I wrote you this poem:

When you were growing in my belly
I couldn't wait to see your smile
Your ten little toes and your cute little nose
you made my life worthwhile

Everything was perfect
my beautiful Emmaline Beau
the way you looked, the way you felt
I love you more than you could know

You quickly started growing
and soon daddy and I could tell
missed milestones and achievements
we knew something wasn't well

So we took you to the doctor
and I'll never forget the day
my baby, my sweet daughter
he said something had gone astray

I can't tell you the reason
and there is no pill or cure
Microcephaly and Cerebral Palsy
a hard life to now endure

Some days it is no hardship
you laugh and giggle and play
my heart breaks on the others
when you struggle with your delays

I know things aren't always perfect
but I want you to always know
those days you stumble and fall
are the days you really show

what it means to be amazing
your confidence is true
you always pick yourself back up
because your perfect being you.


I simply couldn't be prouder
of this little girl I now know
Shes my daughter, shes my hero
shes my amazing Emmaline Beau




I love you baby girl....Happy Birthday!

Dance me to the end of love

It has been a while since I posted.  It has been awhile since I felt the need to.  And though I'm still not quite feeling the pull of my own written word,  I feel the need to share a band I have just recently discovered.  I had been thinking of posting something for Valentines Day...expressing my love...my love for my dear sweet husband, and my beautiful daughter.  And just when I have found myself lacking the right words to adequately describe how in love I am with this life they have blessed me with, I stumble upon this....

Dance me to the end of love

Dance me to your beauty with a burning violin
Dance me through the panic 'til I'm gathered safely in
Lift me like an olive branch and be my homeward dove
And dance me to the end of love
Yeah
Dance me to the end of love

Oh
Let me see your beauty when the witnesses are gone
Oh
Let me feel you moving like they do in Babylon
Show me slowly what I only know the limits of
Oh
And dance me to the end of love
Yeah
Dance me to the end of love

Oh
Dance me to the wedding now
Oh
Dance me on and on
Oh
Dance me very tenderly
Oh
And dance me very long
We're both of us beneath our love
We're both of us above
And dance me to the end of love
Ooh
Won't you dance me to the end of love



"For we alone are honored on heaven and earth..." ~Shingun Takeda

Where are you going and what do you wish? Happy birthday Jillybean!

Five years ago today I held the first newborn I had ever held in my life.  And I swear she looked up at me and smiled!  Five years ago today my beautiful niece Jillian was born.  A few months into her life I got the wonderful opportunity to move in with my sister and help take care of her.  It was quite the culture shock, let me tell you.  I went from late nights and game playing to somewhat co-parenting and Mickey mouse club house.  Don't get me wrong...Katie, my sister, did all of the work.  But I was privileged to be there and lend a helping hand.

One of the fondest memories I have were on the nights when Katie would come home completely exhausted from work...have to make dinner for her and Jillian, do laundry, bills, and the  many other endless chores that a single mom has to tackle all alone.  My shift at Walmart would end at 10 and Katie would be dying for a shower and a minute away.  So Auntie Erin would take over...and my specialty was walking Jillian to sleep. 

I would softly talk to her, or quietly sing lullaby's, whatever it took to get her drifted off to sleep.  I remember one night finally getting her to fall asleep and quietly giggling and she would smile and giggle back in her sleep.  It was everything I had not to laugh to much and wake her up!  Then, one night I started reciting a poem that I had memorized because I loved it so much.  It's the Dutch Lullaby by Eugene Field.  Otherwise or better known as Winkin, Blinkin, and Nod.  The first night I tried it on her she drifted right off to sleep.  And from that day on it has been my poem for her.

Now, the cute little baby that I would hold and talk to while she slept has turned 5 and I can't believe how fast the time has flown by.  Jillian in a small way was my "test run" baby.  Though I never new the deep emotions of parenthood until I myself became a parent, I caught a glimpse of them by helping to raise her.  I panicked during my first diaper change as she laid there and shit all over me! (I promise I'll get you back for that!!)   I cried with guilt the first time I pinched her little leg in her highchair and bruised her.  I smiled and laughed when we did the "hot dog" dance from Mickey Mouse Club house.  I stared in shock at her when I told her "No, get down Jillian!!" one day when she tried to climb up onto the dining room table and she actually got down.  I took a bazillion pics of her getting all messy when she first started eating baby food.  I was there for her first steps (at  8 months, yea...shes a freaking genius....and I'm pretty sure that plays back to the "her pooping on me at like 2 months..she knew what she was doing! >.>).  And I couldn't have been prouder of her when she walked down the isle with her momma as the flower girl at mine and Uncle Caleb's wedding!

Jillian, I'm just so very proud of the amazing little girl that you are!  And I can't wait to see all the wonderful things that you will accomplish in your life!  Never, ever forget how much we LOVE  you Beany!

Silly me thinking that maybe baby Bean had fallen asleep!

Why....hello there...how you doin?

La Sweeet Potato eees de best!!!

The cutest little flower girl and prettiest Maid of Honor ever!!

Breathtaking!!

MOTHER F'IN PEEPS!!!!  O.M.G.!!!

This pic describes her to a T!!

Jillian, some days it breaks my heart that you and your cousin are not able to play the way you want...

But you have always been there for her and helped guide her in your own special way...

Thank you for always being there for Emma!  You are such an awesome "big sister" to her!

Don't let the cuteness fool you...!  She has tricks up her sleeves!

Yea....that was a fun day...huh Katie...lol

Lil biker babe...Jillian's first Harley ride with Poppi

Like mother, like daughter

Yea...this is just her on recharge...

Bad ass chick!

Happy Birthday to my beautiful niece Jillian!

Look at the stars, look how they shine for you!

I'm sure everyone knows what its like to feel all  alone.  To feel like you have no one there that really knows what you are going through.  Since everybody has at one point experienced loneliness, then hopefully you know just how damn good it feels for someone else to look you in the eyes and say..."Hey, I may not understand what your feeling or going through, but I'm here to support you!"  Maybe you don't even have to hear a person say that to you....maybe they don't have to say anything at all....maybe they just need to look damn fine in Yellow!!


September 30th is Microcephaly awareness day!  Microcephaly is a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex.  Blah blah blah....non of which describes how absolutely wonderful and precious my Emmaline is!  Nor does it describe how delectably scrumptious her friends are!  Unfortunatley Microcephaly is not very well known and even our doctors don't know what to tell us about the condition sometimes.  We know the kids who have it are all affected differently.  It can be a disorder unto itself or it can come with a handbag of other disorders. 

Microcephaly for Emmaline has meant developmental delays as well as a diagnoses of Mild Cerebral Palsy.  She didn't sit up by herself till 13 months, try walking by herself till 2 years, and has yet to let us into her enchanting world with her amazing voice.  It has robbed her of ease with fine motor skills so even the simplest task of pointing to things, picking up toys, or waving goodbye are a consistent daily struggle.  Some days, the micro monster doesn't win. We giggle and laugh, and play like all kids should be able to do without struggle.  And others are harder.  The hard days are the days when you feel the loneliness.  Because no matter how damn hard you try to understand your child, no matter how desperately you want to take their pain away...some days you just can't.  And your heart simply breaks....

And then like a beacon of hope you see a twinkle in the lonely night sky.....another parent you can reach out to.  Raising their own Microcephaly Star.   Doing the best they can to make their child shine just a little brighter every night.  Pleading that their child won't get lost in the darkness.  And facing the impossibly vast night sky and telling themselves the darkness doesn't matter, only how bright they can make that beautiful Star of theirs SHINE.

I can't begin to tell you how much it means to me that so many of my friends and family have chosen to wear yellow on September 30th to raise awareness and honor all of the wonderful kids with Microcephaly.  Just know that by simply wearing yellow, your telling all of us parents that we are not in this fight alone.  That our children matter and that with your help, they can shine like the sun!

Thank you...from the bottom of my heart.


"Though my soul may set in darkness, it will rise in perfect light;
I have loved the stars too fondly to be fearful of the night. "
 ~Sarah Williams,  'The Old Astronomer"


Here are some of our awesome Kids!  Thank you for helping them SHINE!!

Cameron with big sister Karina

Emily with big brother Jacob

Anabelle and big sister Elyse

Zoe with little brother Isaiah and little sister Anberlin

Jayden with big brother Ethan

Jazmine with big brother Jerome and big sister Jade

Isabella with big brother Junior

Samantha with big sisters Leah and Allison

Sophia with sisters Claire, Hannah, and Abigail

Luke

Nicolas with big brother Evan

Emmaline

Thank you

You know, there are some days when you really just have to count your blessings.  Yesterday was one of them for me.  Caleb, Emmaline, and I have been truly blessed to have met and get to work with 3 of the most amazingly awesome therapists ever!  Ashley our Occupational therapist, Bethany our physical therapist, and Angie our Speech Instructor.

I simply don't know where Emma would be with out them.  And to be honest I'm not sure how sane I would be without them either!

Mrs.  Ashely, I just want you to know that you helped me through some pretty tough stuff yesterday and I couldn't be more thankful!  The sensory fears that Emma has gotten past with your help is nothing short of miraculous.  The first year of her life I couldn't play with her, because of an unknown fear of the way things felt that was robbing her of her ability to play with toys.  And you have helped her work past those fears.  You have  pushed Emma further than I ever tried and you did so because you knew she could do it,you believed in her,  and for that I am the most thankful.

Mrs. Bethany, you light Emma up like a firework on the forth of July!  She is such a bouncy little girl and you helped her accomplish that!  I easily remember this time last year, crying all the time because I couldn't see how my daughter was ever going to walk.  Then slowly, inch by inch, you showed her the way.  All though I'm pretty sure she heard us talking about getting a walker and decided, 'oh hell no!'  She may always tip toe through the tulips but you have taught her how to dance through them also!

Mrs.  Angie, I just want to say thank you for coming on board and helping us tackle Emma's speech and communication delays.  In the short time you have been with us we have all ready seen an improvement.  Plus you brought with you a ton of new ideas to help stave off the frustration, Emma's and ours alike.  Caleb told me the other day that Emma had all ready taken a liking to you and for her in to do that with someone new in such a short time means you must be something special!

I hope you ladies know how absolutely amazing you are and I couldn't possibly thank you enough for everything you have done for us!

I Am Going On A Journey

I am going on a journey,
Won't you come along?
I need someone to help me.
A person big and strong.

I'm walking on my journey
But my feet are very small.
Can you stand beside me,
And catch me if I fall?

At times when I can't keep up
With life and all its fears,
Can you put me on your shoulders
And wipe away the tears?

When the steps I take are not big enough
And it's hard for me to grow
I know I can depend on you
To let me take it slow.

I'm going on a journey,
Please, won't you walk with me?
I need someone who understands
The place where I should be.

I promise when the road is tough
And you want to turn back home.
I will hold your hand real tight,
So you won't feel so alone.

I'm going on a journey
I don't know where it ends,
But if we walk together,
We can always be best friends.

And when the journey's over
And we find where we should be.
I know that you will be so glad,
You took this path with me.

I'm going on a journey,

Please, won't you come along?

I need someone to guide me

My therapist - big and strong.

 

4 little words

One year ago I sat quietly in a little white room.  Silently playing with my daughter and doing my best to keep a smile on my face.  Talking gently with my husband, mom, and mother in law, about what...I have no idea.  Most likely just avoiding the big pink elephant in the room, if only for a few minutes longer.  Soon the Dr. joined us in the room.  He began asking questions.  Questions I didn't want to answer because I knew they would be a dead give away for a reply that I didn't want to hear.

"How long have you noticed these delays?  Has she been to all her well visit checkups?  Is she up to date on her shots?  Is she in any therapies?  How many milestones has she missed?  Is she cognitively aware?".....Then I nervously watched as the Dr. held my child and preformed a series of Range of Motion activities.  All the while I'm repeating in my head.....'shes fine, shes fine, shes fine.....hes going to say shes fine, shes fine, shes fine.....He then had Caleb hold her.  He placed little alphabet blocks in his hand and sat in front of her, enticing her to play, grasp, reach....anything.  She did nothing.  "Of course she's not going to play with those!"  I thought.  "She hates those stupid wooden blocks!  Why couldn't you pick another toy?"  When in reality, deep down I knew it didn't matter what toy he picked up.  She wasn't going to play with any of them.

The Dr. then pulled out his measuring tape and gently placed it around her head.  He looked up, stared me right in the eyes and said "Her head is small."  ...........and those 4 little words have changed my life completely.

One year later.......

We have been through an MRI.  It was the worst waiting experience of my life.  Followed by the best phone call of my life.  The results showing a normal brain....just small.  We have been to an audiologist, pediatric developmentalist, and opthamologist.  We have been through countless physical, occupational, and speech therapies.  One year ago my daughter could barely sit up by herself.  She couldn't pull up to a stand, crawl or walk.  Now she runs and hops.  One year ago my daughter wouldn't play with toys because of the way they felt, and now shes more daring and doesn't always let the her sensory thief scare her out of playing.  One year ago my daughter couldn't say a word.  She now calls me mama and Caleb dada and is even starting to babble in a wonderfully beautiful language all her own. 

One year ago we were faced with the scariest moments of our lives. I hate feeling like history repeats itself, but somehow it does.  Shes come so far.. and yet.  Her latest neurology appointment brought news of up to a 50 percent chance of seizures.  High def Chromosome testing, looking for genetic problems or some other syndrome we are not yet aware of.  She is progressing which is good, but its also becoming so much easier for us to tell just how very far behind she is cognitively.  

I firmly believe that we can not cherish the great in our lives with out going through the bad.  Therefore, I am holding out hope that the seizure monster never finds our address.  The Chromosome testing finds no genetic abnormalities or other syndromes to steal my daughters livelihood.  And I'm beyond hoping that her lack of communication with us is the only thing that is causing the cognitive delays. 

 And yes, I am hoping that history repeats itself.  I'm hoping that this time next year my daughter will be able to say words, point to objects, and be more capable of interacting with us.  And above all I'm hoping that I can say, "Emma, I love you"   and get a response of  "I love you too" so that I can once again say 4 little words changed my life completely.

"Mother is the name for God on the lips and hearts of all children."

I'll be honest, I've never felt fully committed to the big J.C. upstairs.  I've never fully understood the concept of believe in only me or burn in hell.  Especially when there are so many other fabulous, do good unto other, religions out there to believe in.  Maybe its fair to say that He is now not fully committed to me.  But out of all the things I go through with Emmaline, to be honest worrying about his approval is kind of the last thing on my mind.  The best way I can say how I feel and express my current relationship with J.C is by quoting Lafayette in True Blood..."Jesus and I agreed to see other people, but that don't mean we still don't talk time to time."

How I personally feel about J.C. however does not mean I don't appreciate how others love Him.   I  also have a lot of respect for people that can find peace and believe in something that is bigger than they are.  A bigger picture so to speak.    But I think its also wise to understand and respect that maybe another person has a different view or belief.  Maybe someone else sees that same picture only from a different angle.  I think, unfortunately when it comes to religion a lot of the time people have such blinding faith in their own that they can't see the goodness in others.

I've heard this coping phrase tossed around quite a bit since learning of Emma's issues.  "God chose you."  At first I tried really hard to believe this.  Telling myself I was chosen to be her mother and that He only gives me what I can handle.  God gave you this special child because you could handle it.  Um no, I'm sorry, but the more I think about this phrase the more I don't like it.....I handle "it" because I LOVE HER!  Not because I was chosen...

....and yet, somewhere deep inside my heart...I truly want to believe that I was chosen.  But I don't think God did the choosing...it was Emmaline.

There are so many sick and hurting children and parents in my any cephaly group right now.  So many parents that are at their wits end.  Desperately praying to Him for guidance and peace.  Love and Hope.  Silently crying deep tears of heartache for their children.  Trying to make the best out of the shitty situation they are in.  Trying to help their other children cope and feel like normal kids when on the inside they feel so guilty that the guilt is almost palpable.  Doing their best to make ends meet and put food on the table after their world was turned upside down by their child's extra expenses and requirements.   Screaming into pillows and crying in the closet because its the only was they know of to release the pain of watching their child suffer...

These parents, they have my highest respect.  They do what they do because they must.  Because they would rather hear the sweet thumps of their child's heartbeat then their own.  They spend an entire day waiting to see a 2 second smile on the lips of their child whose been crying all week.  They survive on no sleep because their child's sick, upset, to hot, hungry, needs a new diaper, or just happens to be a night owl.  And were not talking about newborns here.  They then turn around and go to work or make therapy appointments or clean the house all on broken bitter sleep.  Trying like hell to not beat themselves up for being mad at the situation and then ripping themselves apart with guilt over being mad.  Because really...who do you get mad at here?  Your kid....yourself......God?

Whatever the reason.  Whatever the faith.  Whatever the religion.  I think the bigger picture here is believing in your children.  Knowing they are the reason for your existence.  They are what you put your faith into to get you through another day.  And sometimes...they are the reason why you try so hard to believe in Him.