It's been awhile since my last post...we are about a week and a half out since our NTSAD conference, we missed last year but thankfully this year it was here in Orlando. It's very hard to put into words what it feels like to be with our "extended family". The conference this year, for me, was all about comfort and drawing strength from people who have lived and are living our life, if you will. It was very hard not to compare this one to our first one. The first one was very overwhelming, yet we were still able to find comfort with this group. This one was just as emotionally exhausting, but in a different way. There were lots of tears - the first family we ran into was the Benson family. I was so happy to see them, as a I threw my arms around Becky for that first and long overdue hug - I couldn't help but cry. The recent loss of her beautiful daughter was and still is something I think about every day.
I was remembering how Kaleb was at the first conference. He was still able to hold his head up and support his body, he was laughing and smiling - this time, all those things are gone. I remembered sitting in a room with the other "newly diagnosed families" who I have kind of attached myself to since I could relate to them a little better at that time. There were four families in that room, Dezi passed away shortly after the first conference. Her passing was particularly hard for me because she was the same age as Kaleb and also had Sandhoff's disease. Miss Elliott passed away this past February, which was a huge shock to all of us - she was an inspiration, so strong - at three and a half years old, she was still feeding on her own, AMAZING!!! Her passing reminded me that we may not know when it's going to happen, I'd always told myself, there would be signs of organ failure or he would be sick - but that's just not the case. Then there is Ali - who we lovingly refer to as Kaleb's girlfriend (see picture below), it was good to see her looking so pretty and well. At our first conference, Ali was all smiles and laughter - sadly, she has changed too.
You can't help but compare these events, as so much has changed. As a newly diagnosed family, we had read everything there was to read about Sandhoff's disease, but seeing it and hearing it was a big shock and we still had hope. I see that in the faces of the parents with newly diagnosed children and it's hard to find the proper words to give them comfort being careful not to step on their hope - we all have to deal with this on our own terms.
For those of you who have been around Kaleb you know the most noise he makes comes from coughs and raspy, wet breathing - this draws a lot of attention when we are out, especially if there is a suction machine involved. In this group, no one cares or looks at you in horror if you turn on a suction machine during dinner or while someone is talking. In this group when a food pump starts beeping, instead of hurrying to shut it off before everyone starts staring, we all look to see if it's our machine. No one stares as you "inject" medication into a G-tube. Yes, in this group, we are free to be the parents of a child with special needs, without drawing attention. I don't blame people for their reaction, if I'm being honest, those noises and machines terrified me at first too - but for different reasons. It's just nice to not have to explain what or why you are doing something.
Dave listened to the research updates and we are happy to learn that they are still planning on going to human clinical trials at the end of this year. They have decided the criteria for selection, they will begin with the kids diagnosed with the juvenile form of Tay-Sachs. Children with the juvenile form tend to get diagnosed a little later but have a life expectancy into their early teens. While we absolutely support research, do fundraisers to help fund research, we have always known that no matter how fast they work, it is too late for Kaleb - but I know that other families had the opposite hope and this decision was hard for a lot of people. When the President of NTSAD talked about this (his son had Tay-Sachs) he reminded everyone through tears that this is a win for everyone, we've all worked hard to get to this point and will be part of saving lives.
As we always say, this is not a family you WANT to be part of, but we are so thankful to have!
You may not know this, but Whinnie the Pooh is a very wise bear:
“How lucky I am to have something that makes saying goodbye so hard.”
― A.A. Milne, Winnie-the-Pooh