There are so many people I look up to... my mom, my sister, London's teacher and classroom aides to name a few. I especially look up to other moms of children with special needs. I always feel like I am scrambling around for help, answers, prescription refills, doctor appointments, and sanity- but I swear when I look at other SN Moms (special needs moms), they seem to just always have it all together. Maybe this is because most SN Moms I know have kids who are a bit older than London; they're more experienced. Maybe it's because they don't stress out the same way I do... Or maybe, like me, they are the duck who looks calm and collected above the surface and paddles like hell below the surface.
***Insert the funny photo that I can't seem to find here***
Anyway, I have a few friends whose SN kids have passed on. One friend in particular is someone who I never met face to face until the day of her sons funeral. I've never been a crier at funerals, but then again, I had never been to a funeral like this. So full of love. I've never seen so many people come together to give condolences. Of course it was heartbreaking; the loss of any child, for whatever reason, is a hard pill to swallow. Of course there were tears (mine included, I was a mess!)... but more than all that, there was a love for this sweet boy that was almost tangible. I think about this particular boy nearly everyday- I never had the privilege of knowing him personally, but that doesn't mean his light didn't touch my life. My heart broke then, and breaks now, for the loss of his presence in this world.
Another SN child that I never met, but who profoundly affected me passed away a few weeks ago...
I have had the same dental hygienist my whole life. She's always been so kind, so caring, and so dang sweet! She's one of those people that, even though you only see every 6 months, always makes you feel like you just spoke the other day. She asks about your life and actually cares. I found out a handful of years ago that her youngest daughter was born with severe disabilities. We made a special connection through our children. Her daughter was born the year before me, London was just diagnosed, but nonetheless, the connection was made. Over the years since I found out, we talked about our kids every time I went in for a cleaning. She encouraged me in my struggles with London and was always so kind to share her experiences with her daughter. I so looked up to her- she had been doing for my whole life what I was just barely learning to do: caring for someone with severe disabilities, navigating insurance and medical systems that are just not on our side, learning things she never thought she would need to learn, and silently trying to put the pieces of a broken heart back together.
I took Kannon in for his cleaning the other day and because it's summer, I had London with us. My dental hygienist touched London's face as we were leaving and said, "I so needed to see you today, London". Then she looked up at me and told me that her daughter passes away a few weeks back. I didn't know what to say, after all, what COULD I say? What could I possibly do in that moment to ease her pain?
Just like when any SN kiddo passes away, my heart broke. Even though that child is no longer suffering, it's still a tremendous loss.
My heart goes out to Jennifer and her family...