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Skylar Elizabeth imikimi - Customize Your World
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
Wednesday, July 29, 2009 I wish my child hadn't died. I wish I had her back. I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that she was important to you also. If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both. I wish you wouldn't "kill" my child again by removing her pictures, artwork, or other remembrances from your home. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever. I need diversions, so I do want to hear about you; but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day. I know you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know those things through a phone call, a card, note, or a real big hug. I wish you wouldn't expect my grief to be over in a short period of time. I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die. Grief is a life long process. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that she is dead. I wish you wouldn't expect me "not to think about it" or to "be happy". Neither will happen for a very long time, so don't frustrate yourself. I don't want to have a "pity party", but I do wish you would let me grieve. I must hurt before I can heal. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you. When I say "I'm doing okay", I wish you could understand that I don't "feel" okay and that I struggle daily. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky. Your advice to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time. Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone. I wish you understood that grief changes people. When my child died, a big part of me died with her. I am not the same person I was before my child died, and I will never be that person again. I wish very much that you could understand understand my loss and grief, my silence and my tears, my void and my pain. BUT...I pray daily that you will never understand.
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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