I used to wonder if it was jealousy.
Was I jealous of the other families?
The ones that were “normal”?
The ones that had kids enrolled in all the activities–sports, cheer, dance, and track?
Was I jealous of the complete ease at which their children could move through the world?
Was I jealous of how their stomachs didn’t sink going to the mail box because they weren’t going to find enormous medical bills waiting for them?
Was I jealous that they could find clothes that fit their kids, schools were automatically more accepting of their kids, and they didn’t have to bring an entire binder with their children’s medical history to doctor’s appointments?
Was I jealous of the moms who’s biggest complaint was that their kids didn’t pick up their toys or spilled chocolate milk on the carpet?
I would beat myself up over it–how could I be jealous of another person’s happiness? Their blessings? Their wins? Didn’t that make me a terrible person if I was jealous of their success? I always thought of myself as a good person but how can a “good” person be jealous of someone’s joy?
What if it wasn’t jealousy but grief I was experiencing?
Not just grieving the fact that our life was substantially different than other families…..
But grieving the loss of what I thought our future would look like.
Grieving the fact that I will always be responsible for caring, advocating, and financing certain aspects of Callie’s life.
Grieving for the constant discrimination and lack of accessibility and inclusion she will face for her entire life.
Grieving the complications and hesitations to grow our family.
Grieving the loss of my carefree spirit.
Grieving the fact that I feel like I can’t easily relate to other parents because our worlds are so different.
Grieving the never ending fear of losing my child.
Grieving the feeling of isolation and lack of community.
Grieving the lack of support and resources we need to help her succeed.
Grieving the changes her diagnosis had on our marriage.
Grieving the constant medical roller coaster we are on.
Grieving the lack of presence I can give my life because I’m always in survival mode.
Grieving her birth experience.
What if it wasn’t jealousy, but grief showing up in all the unexpected and continued ways?
What if I didn’t need to beat myself up for feeling the way I did but needed to help myself unpack those thoughts and begin to heal?
What if those were the things I needed more support on? More attention and thoughtfulness to how I navigated through? More carefully constructed boundaries to protect my healing heart?
What if those feelings were perfectly normal during my grief journey? I wasn’t some horrible monster–I was a mother who was grieving.
I learned to questions–can you both feel gratitude and hurt at the same time? Our life was nothing like I had ever imagined it. I never thought this would be our story to tell but with time I’ve learned it’s ok to grieve those feelings. It’s also ok to feel great pride, gratitude, and joy for the perfectly imperfect story we do have……..
Because our story is worth telling too.