Wednesday, April 15, 2009

Yikes

I've got this nice, new fancy blog and I have absolutely nothing to blog about!

I started this blog almost three years ago for the sole purpose of keeping family and friends updated on Jack's spinal fusion surgery. I kept it going because I had so many feelings and thoughts to share about this journey Jack and I are on and this blog gave me (and continues to give me) the opportunity to release these pent up feelings and thoughts and transform them into the written word. When I write one of my deeper blog thoughts, I don’t simply decide I need to write something and then sit down and pound it out in an hour. Typically, something will trigger certain feelings and thoughts that essentially run through my head continuously until I write them down. There are times after I go to bed when my brain will not shut down and I’ll get up two and three times throughout the night just to write down a sentence or two until, eventually, I’ve got a cohesive thought worth sharing.

While I love reading comments, I don’t blog for the comments. I write this blog because over the years so many people have shared with me that I write for them - them being those parents who “live the life”. There are also many people who don’t live the life who read this blog. For them, I write to share a glimpse into a life that is so demanding, so difficult and yet so rewarding in many ways.

(Okay, so I also enjoy sharing my silly Eric stories and pictures of all my awesome kids.)

I write this blog for the amazing friends I’ve met through it - some of whom I’ve met in person, some of whom I have not (yet). I know there are a lot of people, including my own family, who don’t understand what the appeal is to cyber-interacting with people you don’t know and haven’t met. The best way I can explain it is "isolation”. Generally, people can find others who share their common interests within their reach. Whether it be through work, church, their kid’s school or extra-curricular activities or through community involvement. However, parents of chronically ill/medically fragile children live a very isolated life. We are isolated physically, socially and emotionally. For the most part, we can’t walk outside our front doors and find other parents in our neighborhoods who share our unique life – parents who deal with teams of doctors, life supporting equipment, insurance companies, DMEs, IEPs, and a plethora of therapists on a regular basis. Moreover, we don’t feel comfortable sharing our lives and our struggles with typical parents because, regardless of how it’s perceived by them, we feel like whiners and complainers when talking with people who really have no idea what our life entails. The Internet opens the doors of isolation and facilitates friendships with people who share a common bond that we can’t find within arms reach.

I guess the point of this post is to say that, as I sit here today, I’ve got no pent up thoughts floating around my little brain waiting to be written and nothing noteworthy going on in our lives worth sharing. Yet, I will continue to blog for those who come here for the camaraderie, for those who come here for the laughs (aka Eric stories), for those who come here simply to see how we are doing, for those I know only through cyberspace, for those I know personally, for those I don’t know, and for those I have yet to meet.

Thank you all.

9 comments:

worthy said...

You did it again, Ann, you may think you have nothing to say but you reach out to all of us in your blog thoughts. I am one of your isolated internet chums. Sam's conditon is so rare we have never met anyone else who has it, and I only know 2 or 3 parents online whose children have it - in fact I think I know more about it than the doctors, thanks to the internet! I have so many online friends whose children share similar health problems to Sam and it is awesome to make contact with people who understand.
So thank you Ann, for continuing to blog, we don't miss a day without visiting and even though we've never met, I feel I know your family so well. And of course, I love the Eric funnies!

Anonymous said...

Hi Ann,

I also visit your blog everyday for several reasons. Firstly I have been going on the trachy board for about five years now(!) so feel like I know and care about you and Jack a lot! Secondly ,sometimes your posts have actually made me cry as they have said so precisely what I feel that it helps so much to know you are not alone in all this and thirdly, I actually enjoy your blog as you write so well that I feel i actually know your family! I'm glad it helps you to write the blog as well. Love Bea xx

Marissa said...

Thank you for continuing to blog Ann. I know I am blessed by your writing, even when you have "nothing" to say. And I am blessed by your friendship, even though we have never met (although Arizona and Colorado are very close, so no excuses for not meeting at some point!)

I love watching all of your kids grow up. And, of course, the Eric funnies keep me rolling!!

Love,

Alicia

Dana said...

O.k. Ann you blog for me! I need your experience. You are the ONLY mom I know who has been through this longer than I have. I need to know ideas on traveling with a special needs child (hours in a car)and all the ligistics (taking a nurse with you)etc. I need to know how you took Jack to the beach. I need to know all your tips and wisdom. Please Don't stop. I look at you and say o.k. you can get to that point. It overwhelmes me to think of living this life for 6 more years or more. Then I see Jack and I know it can be done. You're a big help. Thanks for blogging. You got me started and it's been a blessing ever since. I have found many friends and I don't feel isolated anymore.
Keep up the good work! Thanks my friend:)

Melisande said...

Ann,

Love you. Love the blog. It's a win-win for me!

Kiss my boy Jack for me!

Faith said...

Dito.

No matter what you write, your words are always inspiring.

Thanks for sharing your thoughts, experiences and life with us.

Much Love,
Jen :)

Anonymous said...

I'm one of the isolated moms who appreciates the fact that someone else gets "it". I haven't had much interaction with other parents over the past 7 years, and that hasn't changed much since I started working this year. It is uncomfortable trying to open up to someone about what my life is really like, so I choose to just avoid going down that path. Not to mention, most people just look at me like I'm talking about a horror film. ;-)
Love you, love Jack, love your blog and hope we can see each other again some day.

-Amanda

Susan said...

Once upon a time I thought of you as this amazing super human woman who maybe wasn't human at all, I was so in awe of you. I couldn't imagine what you'd been through and thought I could never do what you do. Over the past 2+ years I've gotten to know you. Even though we haven't met I feel, like I know you and you know, me better than some of the friends I have locally. And now that I know you better I know that yes, you are amazing, but you are just a mom like the rest of us. A mom who loves her boy the way we all love our children. Because of that love we do what must be done. Know that you have helped so many of us on our journey when we weren't sure we could do it. Thank you Ann for blogging.

Carolee said...

Thanks, Ann - what you say about isolation and wanting to connect with someone who understands is so true. I don't think I've introduced myself but we're on CureCMD together (I'm Emma-Lynn's mom) and I really enjoy your insights here.