Chloe's Story

"When we know angels, we are so amazed with life,
we cannot be afraid of death...and all
our stories end in blessings."

A Mother's Journey

The following story is written for my darling daughter, Chloe.  I realize it is personal and at times heart-breaking but with this story I would like to tell the reader about a very beautiful, very amazing little girl who has changed me forever.  Chloe has taught me the true meaning of unconditional and absolute LOVE .

At 8 months of age Chloe was diagnosed with an extremely rare, degenerative, genetic disease called  "Krabbe's Leukodystrophy".  At this time there is no cure and our daughter is not expected to live to see her 2nd birthday.  But we cling to the hope that through education and awareness that one day there will be a time when she & other children with this terrible disease will be able to laugh, play, run and jump as they so deserve to.  No child should have to live with this devastating disease that quickly shuts down their sweet little bodies.

You came into the world weighing 8 lbs. 5 oz. and my first reaction was how absolutely beautiful and perfect you were.  Love was what I felt when I saw your perfect face, those mesmerizing eyes, those perfect lips and that adorable little nose in the middle of it all.  I was so overcome with love for you, I wanted to hold you and never let you go.  We named you Chloe Isabel Fedorak, Chloe in Greek means "blooming" and it couldn't be more fitting.  You have bloomed each day of your life and you will bloom in our hearts forever.

I've tried many things in my 30 years but never anything more amazing than being your mommy.  You are absolutely perfect, so much so, it brings me to tears.  Never in all my life have I been in the presence of such a remarkable sight.  I love you more than I can possibly contain in my heart, it just spills over until it consumes my body and radiates towards you.  Thank you for blessing my life with your miracle.

The first expression you showed on your sweet little face when you entered the world was the most adorable pout.  As your daddy cut the cord he exclaimed to your mommy, "Well, she's got your pout!!!".  I couldn't be more proud.  Auntie Sandi was right there to film the whole amazing experience and your Uncle Brian was mommy's Birthing DJ.  As you took your first breath you would have heard the sweet melodies of the Beatles in the background (although the sound of the music may have been muffled by your mommy's sobbing tears of joy).  I'm sure your daddy would have preferred it to be Tom Waits welcoming you into the world but because he was otherwise occupied at the time, Uncle Brian took musical matters into his own hands.

You were such a blessing considering the long 9 months of pregnancy for your mommy.  Unfortunately, I was sick pretty much the whole 9 months and off work for a big portion of the time.  Despite being sick  you appeared to be very healthy with each ultrasound and checkup and your daddy & I couldn't be more excited as we anticipated your arrival.  Pregnancy sickness (or morning sickness as they call it - although in my case it was all day, any time of day sickness) happens to be a curse of our family, your grandma and great grandma also suffered with sickness throughout their pregnancies but had healthy babies.  During the pregnancy, I said I would never get pregnant again because I never wanted to go through being that sick ever again. The amazing thing is that the moment you entered the world the very first thing I said to your daddy was, "I want another baby!".

I'd like to tell you a little tidbit about your daddy prior to your arrival.  About a day and a half before you were born at about 3:00am Saturday I awoke to a dampness on the sheets, I pulled the curtain back to get a bit of the street lights to shine through so I could see what was happening.  There was a bit of bloody discharge "show", so I immediately jumped out of bed, turned on the lights and woke your daddy up to tell him I thought I might be in labour.  Well, your daddy, in a sleepy daze, told me to turn out the light and go back to bed (I don't think he really heard me as he was soon back into a deep sleep, he  says he doesn't remember).  So I quietly turned out the light, snuck into bed and by the ray of light shining through the curtains from the street light I looked in my pregnancy book to see if I was in fact in labour.  It said that I was probably experiencing very early labour so I quietly lay there waiting for a more reasonable hour to bug your daddy again.  Can you believe that daddy of yours?  He really is a great guy but just don't interrupt his sleeps...

When you were 3 days old, the doctors told us we could take you home.  Do you know that we had the first snowfall of the year on the day you were released?  It had to be the best day of your mommy's life, my two most favourite things were happening, snowflakes on my face and my sweet baby girl was coming home for the first time.  Your daddy and I felt so strange walking through the corridors of the hospital on the way to the parking lot, we weren't even escorted by hospital staff, they just let us leave with you.  We couldn't believe that they were leaving you solely in our care.  When were your responsible parents coming to pick you up?  Were we ready for this?  I guess we would find out....

On your first nights home from the hospital you slept right beside mommy and daddy as we watched you breathe, sleep, dream, yawn, open your beautiful blue eyes, and lick your lips.  We were the happiest we have ever been, every thing you did amazed us.  You met our 5 year old cat, Gromit, for the first time and you were so fascinated by him, I wish we could say the same for him.  Gromit seemed none to pleased to have you come and steal away his limelight.  Well, he had had it for 5 years and I think it was about time he passed on the torch.

You have been such a remarkable little girl since day one.  Do you know that you never cried?  Your Grammy & Grampa thought it was so strange that you never cried.    You just seemed so content, so wonderfully relaxed.  Everyone who came to visit and everywhere we took you people commented on how calm and relaxed you were.  We could take you absolutely anywhere and you never made a fuss, we weren't sure that you knew how to cry.  Grammy & Gramdpa always tried to make you cry because they said it was good for babies to cry because it exercised their lungs. Seriously though, all your grammies & grampas couldn't be more thrilled with how perfect their beautiful new granddaughter was, you were such a miracle for us all, you were their first grandchild and you will always be special because of that.  As for your lack of cries, your mommy & daddy were happy as can be, we couldn't love you any less whether you could cry or not.  Looking back we now know that you must have been saving up your cries for a later date, but we'll get to that a bit later in your story.

As far as textbook milestones go for babies, you were reaching them all.  We thought we saw a smile when you were just 3 days old, although I'm sure most would say it was just gas, I'd like to think otherwise, but that's my prerogative 'cause I'm your mommy.  You first held your head up on February 21, 2001 (at about 3 weeks old).  You first discovered your delicate little fingers on March 16th (at about 1 month old) and on March 17th, you truly did smile for the first time while mommy was changing you, you absolutely love change time.  You slept through the night for the first time on April 1st, at just 2 months old, and you continued to do so every night (8 - 9 hours) until you reached 7 months.  Mommy witnessed the most wonderful sound she had ever heard on June 6th while she was bouncing you on her knee, singing "Oh yes we have no bananas.....".  You LAUGHED, what a beautiful, beautiful sound.  You are so amazing and I love you for that.  You first reached for a toy on June 1st (at about 4 months) and on June 17th (Father's Day) we gave you your first taste of solid food, rice cereal mixed with breast milk, mmmmmm!!!!!  You loved it!!!!!!!!!!

In retrospect, something that did happen from about 4 months on is you became increasingly fussy when it came to being with other people, but your daddy & I weren't too concerned because compared to other babies we've known you were a dream.  If there were too many people, or if you became overstimulated or if other peopled tried to hold you, you would let out a shrill cry.  If I was not right there to comfort you, you would continue to cry hysterically until I picked you up and you would immediately STOP!  From this point on it became increasingly more difficult for me to be apart from you.  If I left the room or left you with daddy while I went shopping (for not more than an hour), I would return to find you crying hysterically.  Your daddy said you would be okay until the door clicked behind me and then it was game over.  Although I was flattered that you loved me so much that you didn't want me out of sight it would become more and more difficult for family members who also loved you dearly to get close to you.  Everyone wanted to hold you so bad but you just wouldn't let them touch you.  Thank you for loving me so much sweetie.  I LOVE YOU.