Saturday, November 6, 2010

Sharing And Reflecting

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!


Devon said...

He does look cute. This post (minus the ear issues) made me smile!

Junior said...

Issac you look sooooo cute in your Buzz Lightyear pjs.
Sure hope they can get those ear infections taken care of.

Alicia said...

I am so glad you are reaching out and helping others in this way, even though it is outside your comfort zone. What a gift to others!

I'll be praying for a sooner appt for Isaac's ears. You shouldn't have to wait that long, that's crazy!

Love the Buzz Lightyear Jammies, but especially the adorable boy in them!

The VW's said...


Great job on speaking on behalf of those with special needs!

Hope his ears clear up soon....poor boy! Big Hugs!!!

Gibson's said...

I sooo appreciated that you shared your story and that now we are friends and we can walk together in this journey. You are going to be the greatest help and support in my life. Owen will be greatly blessed to have you in his life. I can't even express how CUTE, ADORABLE, LOVABLE Issac is. Can't wait to meet him. -Maren