The annual family conference is never "easy" but it is so nice to be with a group of people who know EXACTLY how you feel. It doesn't matter if this is your first conference after being newly diagnosed, or your first after the loss of your child, there will always be someone there who knows exactly how you are feeling in that moment and can share their experience with you.
Sadly, there were only a few "affected" children this year at the conference, many just couldn't make the trip but painfully missed are the one's who are gone from this earth, like our Kaleb. I remember our first conference - well, I remember being there and meeting people, the rest was a blur because it had only been 3 weeks since we learned about Sandhoff's Disease, but I remember feeling comforted there by the strangers who opened their arms to me and instantly welcomed me into this family. I remember hearing people say things and thinking that's exactly how I feel, I remember the feeling of relief when I discovered I was not alone and mostly I remember seeing families who had lost their child, functioning, smiling and laughing, something I was sure would never happen to me.
Preparing for this conference was easier, there were no medicines to dose, no food or pump to tote, no cumbersome suction machine, I didn't have to worry if I had enough seizure medicine to get through the day; this time, all I had to pack were some clothes, a picture of Kaleb and his "baby" (I would have rather had to pack all of his things). I just keep thinking that only a year ago he was with us, that seems like only yesterday, yet it has been only six months since his passing and it feels like a lifetime. I was not able to mentally prepare myself for this one, this time I would be attending the bereaved parent groups instead of the groups for affected children. How would I handle looking into the faces of the newly diagnosed families and telling them they would be "ok" when I am not. How do you tell them that they will get through everything when I feel like I'm drowning in my sorrow. By the end of the three days I was so emotionally drained that I could hardly stand, yet I find myself counting the days until next year.
I got to cuddle my beautiful little Mallory, stroke her little cheek and hold her hand. I got to wrap my arms around two beautiful little boys, Kuper and Isaac, and I am so thankful for their parents sharing them with me. Secretly I just wanted to "feel" Kaleb with me, I had hoped that holding those precious little boys would, if only for a second, let my arms remember what Kaleb's body felt like in them...I wanted to close my eyes, sniff their hair, feel and see Kaleb....it didn't work. I felt privileged to hold these little Angels, but it did not make my longing to have Kaleb in my arms go away, I miss him so much.
Sometimes I feel like I'm stuck in a world that continues to turn around me, with me unmoving, standing still, becoming more lost in my sorrow, but being with my NTSAD family reminds me that sometime, someday, I will be OK.