User - posted on 05/25/2012 ( no moms have responded yet )
Skyler Sue was only 3 months old when she passed away on Mothers day (May 13, 2012). After she passed away, every day is just so painful, especially when I wake up realizing she is gone. Skyler is born with a severe neurological disorder and expected to live for a few years. We were devastated knowing that, but she only lived for 3 months. How I wish we knew, so we would've never gone back to work and just stayed every day with her, taking care of her and just enjoying her.
The pain I have as her mother is so unbearable. I am doing my best to focus on the happy memories I have with her, but I can't help but feel envy towards other moms - or anger that our time with her was cut short when it was already short to begin with.
I remember when we were told Skyler have five years to live, me and my husband took videos and pictures of her like crazy. We made a blog for her www.SkylerSue.com so she can reach our family and relatives living out of state and overseas. We wanted her to be surrounded with love and never be deprived of it. We also lived every day like it was her last (even when we thought she have a few years). Eventually her blog also reached other families going through similar situations like us. And the videos and pictures help them cope with fear and stress of raising a child with severe disorder. Skyler Sue doesn't talk, rarely smile - yet in her short life she inspired so many people. I am just proud of my little princess, yet so sad I didn't have much time with her.
I know she is in a better place now. No pain, no disoreders - she can do whatever she wants - talk, eat on her own, walk, --- FLY. I just can't wait for my time to come, when I can be with her again.
Love you so much my little Skyler Sue.