What is it about light that mesmerizes us? I could sit and stare at a burning candle or a fire in the fireplace for ages. Addy loved being parked in front of the fireplace too and would become entranced by the flames. I’ve been reading a book by Patsy Clairmont called “Catching Fireflies” in which she goes into depth about all the different forms of light and their impact on us, starting with God saying “let there be light.”
There’s something about being told your child won’t live more than a month that has you desperately seeking a light in the darkness that seems to surround you. It only takes a small glimmer of light to give you hope. Because no matter how much darkness is around it can’t hide even the tiniest flame. I found my light through other parents who have gone before me with a child diagnosed with Trisomy 18. I find myself more in awe now of those who gave support and advice to me after their child died, because I find it extremely hard to do now. I jumped in all the Facebook groups and shared my experiences and knowledge I had gained while Addy was here, but now that she’s gone it’s harder to do. I guess I feel like my advice isn’t wanted or needed because I ultimately couldn’t keep my baby alive.
It’s really hard to be a light for others and provide some hope when it feels like your story didn’t end the way it should have. It’s hard to see others get the miracle you begged and pleaded for. It’s not that I want anyone to join the horrible club of burying their child. I want other kids with Trisomy 18 to beat the odds too and show doctors they deserve to be treated as any other child. It just brings about the questioning again when others get the miracle I didn’t get. But in reality I’m looking at it all wrong. I did get the miracle. God allowed me to love on Addy for 26 months and 10 days (plus a couple hours). According to the NICU she shouldn’t have lived past a month, but she did! It’s been almost 8 months since I held my silly, crazy, sweet, and giggly Addy Grace, and today is the first time since she died that I’ve shared a medical experience with a Trisomy group. It’s really hard to be a light for others and give hope if I don’t say anything.
“You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.” Matthew 5:14-16