Friday, October 4, 2013

A Voice

Although I love NBC's "The Voice", that's sadly not what I'm blogging about today. Maybe another day.

It's Spina Bifida Awareness month!! Isn't it nice that Evan was born this month? Now I've always had a voice (and opinions to go with it--just ask my husband) but Evan has given me the unexpected gift over this last year of feeling like what I have to say is important. I've developed an eagerness to share our experiences and feelings in order to bring about that all-important AWARENESS. My hopes are so high, I can't even begin to describe how big my goals have become to do great things and be a better person.

I was so flattered recently when I received a special request from a stranger who read my blog. I never before thought of strangers reading my blog but I've actually had a few people reach out to network and connect with me. Heather has an important message and story. She invited me to share her voice on my blog and I'm happy to do so in the spirit of this month of awareness.

Heather's Story: I am a wife, mother, and a mesothelioma survivor. When my daughter was 3 ½ months old, I was diagnosed with this rare and deadly cancer, and given 15 months to live.  My prognosis was grim but I knew that I needed to beat the odds for my newborn daughter, Lily.  It’s been 7 years now and I feel that it is my duty to pay it forward and inspire others.
I clung on to hope throughout my whole journey with mesothelioma. When you have hope, it makes the battle easier.  I want people to be inspired by me, I want to make them fight; give them something to hold on to when all else fails. That is why I do it.  If I inspire one person, I've done my job.
I'm using my personal story to help raise awareness of this little known cancer, and to provide a sense of hope for others facing life’s difficult challenges.
Here is a video of my story that I am hoping to use as a tool to raise awarenessClick Here to see Heather's Video

I'm so inspired by awesome people. I want to meet all the awesome people in the world and learn all of their stories and tell everyone else about how awesome everyone else is. Thanks, Heather, for letting me share.
I also know someone else who is starting to share his voice...Evan just started speech therapy two weeks ago and he's doing great! If you asked me beforehand what I thought about an 11-month old in speech therapy I would have said, "There's nothing they can do that I'm not already doing at home. 11-month-olds aren't supposed to talk yet anyway so it's not gonna help." If you asked me shortly after our first therapy session how it went I would have said, "I didn't realize I've been talking to my son so poorly for the last 11 months. No wonder he's struggling." After I processed the experience and thought about it for a while I would now say, "Speech therapy is awesome for supplementing my infant talk for children who process speech differently." Evan just needs extra help to learn some things and I'm super grateful to be given all of the resources we have to learn how to do this.
So what does an 11-month old do for speech therapy? Right now we're working on mimicking gestures. Beginning speech is really just copying and experimenting with vocalizations and in order to learn how to copy speech he'll first need to learn how to copy anything. We're starting with big things like clapping or pat-a-cake. Then we'll move to fine motor movements and then to sounds. I'm also learning to simplify and repeat my talk during routines to teach basic words. The therapist also has this vibrating stick thing she puts in Evan's mouth to stimulate it. He likes it. I'm confident we'll have a little chatterbox on our hands in no time!
In June, at 8 months old, Evan couldn't roll over, crawl, sit up, bear weight on his legs, self-feed. Now, just 4 months later he's mastered rolling and he loves eating little finger foods. He can sit up independently and then move from sitting into crawling position. He can crawl around rooms and crawl to toys he likes (though he frequently just crawls straight to mama). He will sometimes even bear weight for a second or two, which is actually a big deal to us. I never thought I'd see the day, but sometimes he even entertains himself for a few minutes. Woohoo! Free time for mommy! It's crazy to see how, even though it's been at his own pace, he's learned how to do everything he should be learning. And he has a goofy smile and a silly personality and he makes me laugh and just love bein' a mom.

Happy Spina Bifida Awareness month!

Mmm...leg rolls

1 comment:

  1. These pictures just make me happy. Especially #3. :-)