Feelings

”So very sorry for your loss.”

Are these words enough to say to someone who just lost their child? This morning as I looked at my Facebook feed I saw that another CDG child earned his angel wings. Tears welled up in my eyes and I wanted to slam the cupboard door. I looked at his photo and imagined the love his family has for him. I envisioned the kisses that were placed on his 2 year old chubby cheeks and the warm tears that fell over him. I cannot imagine the empty space he will leave behind.

It’s simply not fair. We’ve had our diagnosis a year now and every time a child earns their wings I can’t help but cry. I put myself in their mother’s shoes and I sob. Then I feel something that I feel a bit guilty about. Relief. Relief that our little guy is here and getting stronger. I compare their symptoms to our symptoms. I compare their subtype to ours. Finding differences brings me relief. These feelings don’t discount how my heart aches; the feelings of relief lie just under my feeling of sadness.

I hope these feelings are normal. I think they are. I’m sure that underneath the half smiles people give me when they see my son in his adapted stroller with his wandering eyes is relief. Relief that their children are healthy. Relief that their son doesn’t have to attend therapy three times a week to learn to sit up. Relief that a common illness is just chicken noodle soup and rest, not monitoring a fever above 100 degrees and praying that he doesn’t have a febrile seizure. Or maybe the half smile is all about his hair, who knows. 😉

I do know that CDG is scary. My feelings of heartache and relief will likely surface over and over in our son’s life, but the feelings of joy and pride will too. Days like today are hard, but absolutely nothing can compare to the moments of happiness.

February 28 is Rare Disease Day. To spread awareness and honor those who have earned their wings please consider going to this link to see how you can get involved!