Still the only one?
In light of today being Rare Disease Day, I thought it fitting to do a MUCH needed update to this blog and a promise to keep it going. taken 3-2020 while on vacation So many times have I sat down to write, so many nudges from God, and each time I was unable to do so. Maybe it was my way of living in a little bit of denial, making excuses of being too busy or what not. To write this is to admit each and every time that I look at it or respond that this real and feel all of the emotions that go along with it. I could also blame my job and Covid 19 for the delay, as I am an Critical Care Nurse and we'll just say its been a difficult year. Whatever it may be, here we are today again wishing none of this was real but facing it and moving forward. So first off, for those of you who don't actually know me, my son Asher has a very rare neurodegenerative disease. In fact, he is the first person EVER to be identified. It is a recessive disorder involving gene ATG4D. Both of our singl