It's been a while....

I used to really enjoy blogging. My semi-regular posts were often light-hearted and I tried to write in a way where you could see the humour in what at the moment seemed like a pretty bad day. I enjoyed the occasional comments from readers and felt good when people said that what I had written had made them laugh. I enjoyed making people feel good. I haven't posted much in the last few weeks and there is a good reason for it. Lately, I don't feel good. The "funny" is all used up. In it's place is just a hollow emptiness that doesn't seem to fade. I knew that this phase was bound to happen, I just wasn't sure when. I'm tired of always having to be strong. I'm tired of hearing that I'm an "inspiration" and that what we did was heroic. I'm tired of looking for the "small blessings" and of treasuring the moment because I don't know if there will ever be another one. I'm tired of trying desparatley to keep my family functioning while running frantically between meetings and therapy appointments and the housework piles up and I am left to fall in to bed exhausted at night. I'm tired of being the anchor to too many ships. I'm tired of being tired.

I watched a mother walk down the bike path yesterday. She was pushing a jogging stroller and walking with a purposeful stride. One half block behind her was a 3 year old boy. He, apparently, hadn't gotten her memo that they had an agenda and was meandering aimlessly along the path dragging a stick along the ground and watching the path it made in the damp earth. His mother had obviously taken the time to carefully choose his brand-name clothes and sneakers but couldn't take the time to join his world as they walked. I wanted to shake her and point out exactly what she was missing. I see parents everywhere with young kids and a piece of me wants to go back to the moment when my life was good. A moment when I remembered what it was like to wake up in the morning and honestly feel a sense of excitement about the day to come.

Thursday, Tatyanna will be getting her "wish pony". As a horse-crazy mom who wanted nothing more than to have her daughter share her passion for the equestrian world, this should be a momentous event. But instead of joy, it will be bittersweet. My daughter's pony is a result of a wish made to the Children's Wish Foundation. My dreams of teaching her the elements of basic riding and cheering her on at her first show are gone. Instead I will try to find joy in her smile as I walk beside her and she goes for a walk on her pony; all the time praying that she will have another day to go for another ride.

I debated deleting this blog. I know that I have picked up readers(read: family) who can't handle negative emotions.
But, I changed my mind. This is my reality. It's not sunshine and roses. The reality is, my 5 year old daughter has Batten Disease and as such I will have to look for light in the darkness and smile even though my heart is breaking. It will be a bumpy ride, so if you aren't willing to hang on, it's probably best that you get off now.

On a lighter note, TV seems to have taken a sudden liking for using sumo wrestlers in its advertising. I can appreciate this as I can't seem to watch sumo wrestlers without smiling, just a little. It's probably horribly unPC, but this time, I'm ok with that. Sumo wrestlers make me feel better. So there.