Hi all, sorry it's been so long since Ron or I have posted - it's been a surprisingly busy summer! While it feels very busy, we really don't have much new news. Which I think is good news. Joey is doing wonderful. He still smiles and laughs - it just melts our hearts. This morning, I heard Joey in his room and he was just laughing and laughing...I have no idea what he was laughing at, but he sounded so beautiful.
We haven't done much traveling this summer, as it is so hard with JoMo. He doesn't really like being in a stroller - in fact he usually screams and cries within the first 10 seconds of sitting in the stroller. Not sure why. So, to try and fix this I went out and bought yet another $300+ stroller - this one, the bumbleflyer, has a handle that flips, so he can ride in his stroller and watch mommy and daddy. The first few weeks were rough, but I am happy to say that last weekend we were able to go to the mall for almost 2 hours. This is the longest Joey outing we have had in MONTHS! I hope this trend continues (fingers crossed).
Ron and I are doing ok. We have some good days and some not-so-good days. Why some are good and some are bad - no idea. Some days I can just look at my little man and be happy that he is here with me. I know that I am so lucky to have him and see his beautiful face and smile. Other days, however, I simply cannot get past the fact that he won't be with me forever. On those days his beautiful face feels like a tease "see what you have and what you won't have someday". I look at all the other children out there and think "why Joey", "why Ron", "why me?????". But, fortunately for me, Ron and Joey, our bad days are far outnumbered by our good ones.
The other day Joey slept at his Grandma and Grandpa George's and it was so strange in the house without him...while part of me enjoyed the lack of responsibility, the other half kept thinking "so this is what it will be like when Joey isn't here anymore...". Sad, I know. But again, I'm able to focus on our beautiful boy more days than I focus on our loss.
And, more good news...Ron has not had a seizure since father's day. This is a HUGE relief as not only does this scare the s*it out of him, it scares me too. Plus, the stress of worring is almost too much.
and the final news...we are having a benefit to raise money and awareness for Joey and Tay-Sachs. The benefit is called the JoMo Halloween Funraiser and will be on 10/23 at the 20th Century Theater in Oakley. It's a halloween themed dress up party. THANK YOU to the 20th Century - they are doing this FREE of charge and even giving us all of their profits! You all rock!
Love to all,