Tuesday, August 23, 2011

Library Books




I received my order of books a few weeks ago. I have read some of it but I am just taking my time. I don't want to get overwhelmed with emotions that sometimes feel just below the surface.

These books are just what is needed, whether you've been recently diagnosed or have been living the DMD life for many years. When we were first diagnosed, the first place I looked for information was the internet. Secondly, I checked our local library. The Columbus Metropolitan Library is #1 in the nation and I was sure that I would find a wealth of information there. Wrong. I was surprised that there were not many books on Muscular Dystrophy, let alone Duchenne Muscular Dystrophy. The books that I did check out were a couple of years old, and while I didn't know it then, I now know that a couple of years in the DMD world is a very long time! Research is progressing rapidly, and prayerfully it will be in time to help my son.

When I was asked to participate in this book, I jumped at the chance! Little did I know that it would turn out to be so much more. There are more than 30 parent that made the decision to share their story for the world to see. One of the goals is to educate the world about Duchenne. Now that I have it here in print, I am surprised at how similar our stories are. Many of us experienced the same emotions and feelings, had the same questions in knowing that something was wrong with our son but had no idea what, and I also share my reliance on the Lord for whatever may be in our future.

Tonight, I decided it was time to take 2 of my copies to the library to donate them. I do know that sometimes when books or media is donated, they decided not to shelve it, but donate it to the Friends of the Library program to be sold.

I walked in with my oldest daughter, Kayleigh, and my youngest son, Ben (my son with DMD). Ben and I dropped off our books that were due and Kayleigh and Ben went to pick up our reserves. After I returned our books, I walked to the main librarians' desk to ask how to go about donating books. I explained that I had 2 copies of a book that I wanted to donate, to go into circulation, not sold off. She said that it was the decision of the Main branch and that there are no guarantees; once I give them, I relinquish all rights as to them being shelved or sold. She said that if there were other copies within the Ohio library system, that could help their decision.

I explained that it just came out and it was a self-published book. I proceeded to tell her what it was about; a group of parents with children with Muscular Dystrophy got together to share their story. I shared with her that when we were diagnosed, there wasn't any type of book like this and that it could be a help to someone. She looked it over and told me that her sister had MD! We had ourselves a nice chat. Her sister never had a genetic diagnosis of MD but had a very complicated birth. The umbilical cord was wrapped around her neck and no c-section was performed. The doctors broke both of her legs and one of her arms by the use of forceps during the birthing process. This caused a neurological disorder and was classified as a 'dystrophy' in which the MDA stepped in to help the family. This librarians' sister was on several of the telethons and eventually died at the age of 19 because her lungs did not function well enough to keep her alive.

Wow!

This is what she told me, 'because MD is so near and dear to my heart, I will do everything I can to get these on the shelf'. She also said she was bending the rules and would call me either way- if they shelve them or let them go. She also said that she would get them back for me if they decide no. Another wow! She had me write my name and number down and when she saw my last name, she asked me if I was Kayleigh's mom haha. (She volunteered there this summer).

I am confident they will get out there for people in the Central Ohio area to read. I will keep you posted! Oh, and if you want to order your own copy, just click here ;)

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