I’m running around today, 50 million things on my ever growing to-do list. I’ve got the water for tonight’s pasta on the stove, laundry chugging along, coupons strung out in anticipation of hitting the grocery store to pick up the stuff I need for Parker’s family birthday party on Sunday.
I tell myself that if I stay in my sweats today I’ll even sneak in a long walk during nap time. A girl can hope, right?
But what’s really been on my mind today is blogging. Do I keep this up, or do I start to wind it down. This hasn’t been my most prolific blogging year. Writer’s block has been my constant companion. While I know there are those who still come to visit, comments have all but dried up.
To be honest, it’s the comments that keep a blogger like me going. It’s my ‘paycheck’ filled with the ideas and thoughts and questions and experiences of others who share our journey. It’s my way of connecting to a world I don’t often get to go out and experience as I work to keep a kid alive.
I keep wondering if I’ve finished sharing Parker’s story here. I started this blog as a form of advocacy, I wanted to show first hand that a life with medical needs and an extra chromosome was indeed a life worth living…..and celebrating.
Blogging takes time. It takes thought. It often takes courage. Sometimes it’s hard to know that I have people peeking into my daily living that I wouldn’t choose to be friends with in real life.
Or those who I know read my blog while they keep their blog private.
I’m not an extrovert by nature. I’m the one sitting quietly on the side happily observing while letting others have the spotlight.
I’ve taken a few pot shots on my efforts to fund raise to meet Parker’s needs. Trying to fund raise for items like a generator to keep Parker breathing during a prolonged power outage tends to bring out the snark in certain people.
Yet, I’ve found it interesting that a few of my biggest fundraising critics have recently turned to the exact same thing to raise money for items their children need. huh. What’s that saying about rocks and glass houses?
There are many areas to which I could lend my voice of advocacy. I could spend even more time as a Parent Partner with Parker’s Pediatrician’s office. Lots of parents in real life needing someone to help them through the maze of hell we are so familiar with.
I could spend more time working with our local legislature, bringing their attention to what it is like to raise a medically fragile child in Utah. Let me tell you. It ain’t easy.
The only thing harder is trying to educate a medically fragile kid with special needs in this state. Which reminds me, I need to give Senator Osmond a call.
I’ve tossed the ideas back and forth……keep blogging…..stop blogging.
I’ve made lists of why and why nots.
Then it hit me. Parker’s story is far from over. We are still very much in the thick of things here at our house.
The pulmonary hypertension is still a huge issue. I have NO idea how to potty train a former IA kid. We’re still running on non-verbal and spending our days homeschooling and praying for break throughs.
Babies, pre-diagnosed with an extra chromosome are still being aborted simply because of fear of the unknown.
After MUCH deliberation, I’ve decided to stick around.
The fact of the matter is I still need your help and ideas. It takes a village to raise a medically fragile kid with special needs.
This Mama of advanced age (sound familiar, anyone?) even has a few new tricks up her sleeve.
- Soon I’ll be starting a new feature with six other special needs Mamas called “7 Moms Talking Special Needs.” I have the banner all ready to go…..I just need to figure out how to get it on this here blog.
- I’ve been invited to share over at a new blog, Simply Preparing. It’s a blog about what I do in real life to help afford this Brave Hero of ours…..adapting in place….stocking up your pantry…..canning……shopping the deals…..frugal living.
- I’ve applied to have Parker’s blog feed picked up at Type A Parent AND I’ve applied to help over at Teach Mama with their ‘We Teach Special Learners’ community. (Parker and I would LOVE it if you would put in a good word for us with both Kelby and Amy <firstname.lastname@example.org>)
- Finally, come join me and Parker on our newest Facebook Page!
I’m going to spend time this weekend re-grouping and making nice with my muse.
Here’s to a new start.