I used to write a Christmas letter every year after my daughter was born and diagnosed with spinal muscular atrophy. Every family member and friend received one and it was my one annual effort to update all the people in my life on the condition of my family. But after ten years of blathering on every December, I decided enough was enough, pretty sure that most people were sick of the page-long "random thoughts of Dana Craven" document that got delivered just in time to depress everyone right before Christmas.
Life just wasn't going very well at the time I decided to put the kibosh on my annual letter. My daughter became dependent on her ventilator, family members were struck with cancer, friends had lost their children, my marriage was falling apart, and generally I had nothing positive to share. So I remembered the old adage "if you don't have anything nice to say..." and I haven't written down any personal thoughts since. But it's 2016!! EVERYONE overshares their personal issues these days! So I'm joining the masses and starting a blog on my new updated website.
Yes, I finally decided to heave my poor old website out of the technical dark ages and into current times in hopes that I can make life a little easier for my customers. Yeah, yeah, I'm a little late to the "shopping cart" game, I know. But after much kicking and screaming on my part, here I am looking very 2016, ready to take your online order. (Go ahead....you may all mutter a collective "FINALLY!!!")
The truth is that I've valued so deeply the personal relationships I was able to develop with my customers by NOT having an online gateway for ordering. I enjoy trading emails and sharing phone conversations where I get to know people and they get to know me. I appreciate the personal connection I could make with my customers, their children, and how those connections helped me stay involved in the SMA community of parents who are so relatable. And like most other parents who have chronically ill children, we need to connect with each other for ideas and support and understanding friendship.
So please enjoy the conveniences of my new website! But, friends and customers both new and old, please keep in touch with me periodically. And visit my blog where I intend to post information on products, offer tips that I use with my own daughter, and probably divulge some personal thoughts and experiences that come with the territory of having a teenager with type I spinal muscular atrophy.