Wednesday, January 21, 2009

Special Request

I would like to make a special request of the parents of medically fragile children who read this blog. The website for The Willow Tree Foundation will be getting a face lift and a new look soon. On the current website there is a tab for "Stories", where several parents (including myself) have shared "a day in the life". I want to expand this section and add more "day in the life" stories. Just this week, I received a message from someone who can help get monies from a major corporation into the hands of the Foundation, saying that she was "deeply moved" by the stories on the website. Our lives - our stories, do touch people and do make a difference. I have big plans for the Foundation, but big plans require big money.

To my sorority sisters - if you find a few free minutes (okay, so you'll probably need more than a few minutes) in your otherwise full day, I will be forever grateful if you would take the time to write about a day in your life -- from whatever perspective you choose and however you want to share it. You can email* it to me as a Word document.

Also, anyone with grant writing experience willing to help me, please email me as well.


Thanks much!



Karen said...

Hi Ann,

Long time no comment! I am a faithful reader despite my lack of correspondance. I loved your post about opportunities. It hit home for me, for sure.

I am working on something for the Foundation stories. It is harder than I thought it would be! Do you have a deadline for the stories? I will keep plugging away. I can be my own worst critic and in the end, it will still be pretty bad! karen

Ann said...

Karen - thanks SO much for offering to share your "day in the life". There is no firm deadline. I'm sure it will be several weeks or more before the new website is up. My husband's nephew's wife (my niece-in-law??) has offered to do it pro bono and I told her that there is no rush. If you can get it to me within a few weeks that would be fine and I'm sure it will be great!


Anonymous said...

I'd be happy to write something but I'm not sure Nathan's story is exciting enough. Let me know.

Anonymous said...

I am not sure that Abby will be exciting either. It would be more about the stress of nursing and the lack of understanding on the seriousness of Abby's condition, because she contradics every label that she has. She certainly doesn't look medically fragile or tech dependant. How about I do one Ann and if it is too boring then just let me know.

Ann said...

Kristy and Tess -- it's not about exciting, it's about being real. The struggles of nursing, having a medically fragile child in school and the stresses of finding a competent nurse to be with him or her should the trach become blocked or come out -- these are all struggles that are unique to having a medically fragile child. Please share your stories. You ARE the parents of medically fragile children and your perspectives are important.

Kristy-- all the surgeries alone that Nathan has had to undergo to give him a secure airway and the traveling and cost involved to get him to the best surgeon for his issues. This is important to share.

Tess, you have a lot to share with Abby, especially her recent surgery for a pacemaker.

You both have more to share than you realize.

Thank you!!


Ann said...

I also wanted to share with you that Mary told me the other day that Jack really isn't that "bad" - that he could be worse off. When I asked her what she meant, she was referring back to Jack's first years of life when he was so unstable. My point being, it really is all about perspective. We've almost become immune to the reality that our children rely on technology and/or skilled nursing (caregivers) to keep them alive. (see definition of medically fragile on website).

Thankfully, many of our kids are stable, but it only takes one incident to remind us how truly fragile they are.

John Gensic said...

Thanks for your comment about the g-tube. We are open to ANY new ideas, no matter how weird they sound. For some reason Blogger didn't let me publish your comment, but I wanted you to know that I read it. I am also working on something for the site. I already wrote a memoir about our difficulties in our first few weeks home and our struggles with home nursing, I am just trying to figure out how to cut it down. Is there a length max. you are thinking?



Ann said...

Jenna - no maximum length limit. It's your story to tell as you want to tell it.

Thanks and I hope you can get Mikan's g-tube site issues resolved soon. Also, it's wonderful that he is able to spend time off the vent now.


Faith said...

Oh Ann, you know you can always count on me to pull together some sappy narrative on what "this life" is like! I'll do my best to whip something up in the next few weeks.
Jen :)