Recently I was asked to share Isaac's story at 2 events this month. Since I have no experience speaking publicly or being in the spotlight, this was a little out of my comfort zone. The first event was at a conference about early intervention services where I was asked to share our story and talk about our experience with therapy the first 3 years. There were a few other Mom's of special needs children sharing their experiences too. Our situation was unique though because all of his therapies were home-based. Isaac's therapists were amazing and they were good about understanding that his health came first and therapy came second. Although I was grateful that they were able to come out to the house because of Isaac's health issues, he got very limited services. I hope that what I said at the conference made a difference and will help other parents get more home-based therapy for their children. After taking a deep breath, I was also asked to share our story for a conference about serving the family when a child is seriously ill. The child life specialist shared what I wrote along with some clips of Isaac with his family. I was happy to meet a Mom there who appreciated our story. She's just beginning her journey with a medically fragile child and the uncertainty of a rare disorder. I remember that place, it was such a unbelievably hard place. After the conference I started thinking about Isaac and his life today. I remember those first 2 years and how much I focused on his survival and how long he would be here with us. Now, even though he still has the tubes, I feel like he is thriving. Seeing him enjoying life, his people and his surroundings causes me focus more on how happy I am that he's just here having a good time.
Isaac's having a good week, but still has these chronic ear infections going on. The ENT couldn't get him in sooner than December 27th to replace his ear tubes, but I'm trying to be a squeaky wheel about it. There's only so many times I want to add Cipro drops to the med schedule. Most of the time lately he doesn't need 02, but sometimes he gets congested and just needs a tiny amount during the day. That's OK though because he still looks cute in his new pajamas. A man on a mission!