Have you ever had the feeling when your heart sinks, your skin goes clammy, every sound around you disappears and those one or two brief seconds slow down to feel like eternity?
For me this is exactly what happens when I learn that a child with CDG has become a sweet little angel.
This past February alone 3 wee ones from our CDG family passed away.
As much as I try to always be positive and think on the bright side I can’t help but think….. I don’t even want to bring myself to write it.
Once the shock and feeling of the news being too close to home begins to subside – a feeling of guilt closely follows. How could I possibly write about how my ladybug now has 7 teeth or that she can roll from her tummy to her back, or she has tracked a toy for the first time in her life, knowing that another mother whose child had the same disorder will never get to experience this again.
I couldn’t and don’t ever want to imagine what it’s like to have to lose my baby. Because CDG is so uncertain that teeny little thought always seems to be in the back of my mind. I try to hide it in the furthest corner under all my happy memories but when a little one with CDG passes, that teeny little thought manages to push its way through.
The only thing that sends it back is holding my baby girl, listening to her contagious giggle and knowing that all those who have passed are no longer suffering and are now playing hand in hand, while looking over my ladybug and every other child with CDG.
I thank the heavens every day that I have my daughter, and encourage every parent to hold their own little miracles a little closer and enjoy every precious second as I do.