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Hi! My name is Skylar. When I was 4 months old I was diagnosed with spinal muscular atrophy type 1. I was given 8 months to live but I turned seven years old on June 3rd, 2007.
My Mommy decided to start this journal so you could keep up with my progress or if I am sick you could find out how I am feeling. Please drop my family a note and let them know you stopped by.
You could learn more about SMA at SMA Support
You could visit my SMA friends at Our SMA Angels
Click here to see lots of pictures of me:
Also meet my Caringbridge friends:
Jackson
Aaron
Gooch
MJ
Tabby Paige
Lily
Lance
Kalair
Have a great day,
and remember to
PRAY FOR A CURE IN 2008!!!
~In My Perfect Child
As my daughter was born, I wanted her to be perfect.
When she was a baby, I wanted her to smile and to be content
Playing with her toys.
I wanted her to be happy and to laugh continually instead
Of crying and being demanding. I wanted her to see
the beautiful side of life.
As she grew older. I wanted her to be giving instead of selfish.
I wanted her to skip the terrible twos.
I wanted her to stay innocent forever.
As she became a teenager, I wanted her to be obedient and not
Rebellious, mannerly and not mouthy. I wanted her to be gentle,
Kindhearted, and full of love.
"Oh God, give me a child like this," was often my prayer.
One day He did.
Some call her handicapped…I call her perfect!
   
    
     
My Daughter's Eyes~
In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see, she was sent to rescue me
I see who I want to be
In my daughter's eyes
In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me, gives me strength when I am weak, I find
reason to believe in my daughter's eyes.
And when she wraps her hand around my finger
Oh it puts a smile in heart
Everything becomes a little clearer
I realize what life is all about
It's hanging on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light, it's in my daughter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave, maybe raise a family
When I'm gone I hope you see, how happy you made me
For I'll be there, In my daughter's eyes
You're listening to: Rainbow Connection sung by Kermit
Journal
Tuesday, June 3, 2008 Skylar Elizabeth.., Happy 8th birthday sweet, amazing, beautiful angel. My girl, my life, my hero, I love you so much. I miss you so much. I know you are having a great time today and today we will still celebrate your life here on earth. Make sure to keep an eye out for your balloons later.
This day is a very special day for me. You came into my life, not quite as easy as I would have like you to, but you still came and every moment of the long 37 hours was worth the wait. Your beauty and innocence lightened my life from the moment I saw you. Every minute of every day was so very special to me and I was so blessed to be your Mommy for as long as I was.. I whole 7 years 10 months 3 days and 4 days. Now I am blessed to be the Mommy of my very own special angel.
I know I say this over and over... but I would do anything to be able to walk to Heaven to get you, for just one more day.. One more day of holding you, flipping you, changing you, adjusting settings, listen to vent whispers, range you, neb you, cough you, suction you, paint your nails, kiss your head, listen to your voice.... to love you.
You are my everything Sky. You are and always will be. I have two of the most amazing kids ever. Daniel misses you too. Did you hear him sing Happy Birthday to you about 100 times already?
Gosh Sky.. I miss you and LOVE YOU SOOOOO MUCH.
I know you and the girls are celebrating all day, but if you could stop by your party here on earth that would be great. If not thats ok also.
I love you Sky...
HAPPY BIRTHDAY TO YOU..
HAPPY BIRTHDAY TO YOU..
HAPPY BIRTHDAY SWEET SKYLAR..
HAPPY BIRTHDAY TO YOU..
One long month and one long week..... Till we meet again.
Hugs and kisses to Heaven and back....
Read Journal History
Hospital Information: Heaven
Links: http://www.our-sma-angels.com/Skylar Sky's web site
http://www.caringbridge.org/pa/ronnie Come meet my Uncle Ronnie!!
http://www.caringbridge.org/visit/daniel_lee Meet Daniel
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