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 ;)

I Know Who Holds Tomorrow

Last week, we went to a friends house for a family game of baseball. We didn't really go by the rules. We let everyone bat until they hit a ball, didn't call fouls-if they hit it, they ran, went through the batting line up once and switched sides. With the mix of ages between our 6 children and their 4, it was the best way to go for a fun, friendly game.

Whenever it was Ben's turn to bat, whoever was pitching made sure to get close so he could hit the ball. As he ran the bases, you could just see the sheer determination in his face as he pushed his legs to go faster and faster. Part of me wanted to tell him to slow down some or take a little break. The other part of me said, just let him enjoy himself, he is having so much fun. I decided to just let it go.

I have noticed in the days following, that he has been a little more tired and having pains in his feet. He fell at the grocery store yesterday. I always question myself, wondering if I made the right choice; even the little ones. Should I have stopped him?

Imagine how he and other DMD boys feel. His mind is so concentrated on making his body do something that it struggles so hard to do. Imagine feeling like you can go faster, stronger, higher, only to have your legs produce a fast walk instead of the sprint your mind is determined to make. Imagine running with 50lb weights inside your shoes. Imagine a gallon of milk being too heavy to carry.

Living for the moment is my motto. I didn't used to be like this and I sometimes feel pulled into different directions. As a Christian, I believe that nothing happens by accident. I want to live in the moment, yet I want to see the bigger picture of it all. I know that our lives are only just a vapour. If you think about it, in light of eternity, we are only on this earth for a speck of time. Eternity is what truly counts. James 4:14 Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away.

I want my son to enjoy life. I also don't want anything holding him back from what the Lord has for him. I want our time, mine and my whole family, count for something. Only the Lord knows all the intricate details for our future. I am continuing to place my trust in Him and have faith that He holds tomorrow in His hands.

New book!

What is Duchenne? Why haven't I heard of it before? This is a new book collaborative to educate the world about Duchenne Muscular Dystrophy. 33 parents have come together to share their stories....I am one of them.

MDA Muscle Walk

We participated in the MDA Muscle Walk this year and raised almost $600! THANK YOU to those who donated, not to just our team, but to MDA! Here are a few photos...

Positive news :)

We had clinic last Wednesday at Nationwide Children's Hospital here in Columbus. We were supposed to see the cardiologist but he was having his own surgery so we saw a nurse practitioner instead. Because of his regular cardiologist not being there, we had a long wait and actually wound up being several hours late for his clinic appointment.

Ben had an EKG and an echocardiogram. DMD boys typically have these tests done yearly unless complications begin. Both of these tests showed that his heart looks exactly the same as last year, praise the Lord! We were told that his ejection fraction is 65%. I had no idea what this meant so I asked what normal is. She told me that anything above 50-55% IS GOOD. His is 65%. Good news :)

His cardio appointment was at 9:30 and clinic was at 10:30. Because of our wait, we didn't make it upstairs for clinic until 12:15. We saw Dr. Flanigan, his neurologist, that we see for every clinic appointment. After the muscle strength tests, he stated that Ben appears to actually be a little stronger than last time. This is NOT the norm. He did state that at the ages of 6-7 (the honeymoon years), the muscles are continuing to grow (and then weaken). He attributed his strength to this period of growth. He stated again that he felt that Ben was on the 'higher end of the spectrum' concerning the Duchenne.

After we saw Dr. Flanigan, a physical therapist came and got Ben to do a few tests with him. He is in a clinical study where they measure his strength, they see how long it takes him to get off the floor, and a timed running test. I was not allowed to go with his to this portion of the visit. He is actually in several clinical studies. I feel that it is a benefit for him and others like him, now and future, to further study the complications of this disease.

A few weeks ago, the seating clinic called me to schedule an appointment. Seating clinic is where you take your child and have them fitted for a wheelchair. I wasn't real surprised, as Ben's physical therapist told me that they would be calling. She had actually made the recommendation. When I shared this with Dr. Flanigan, he said nope, he doesn't need that yet, it is way too soon! Of course, I knew that it was too soon for a wheelchair-he still walks fine. He does get tired on longer outings though. Anyway, I have decided to cancel this appointment for the time being.

All in all, it was a very positive visit. We will go back in 6 months. God is good :)

Passing the time while waiting for cardiology.

Duchenne Therapy Network

Here is a link with info from a physical therapist regarding DMD.

Make a Muscle-Make a Difference

Our family will be participating in the MDA Muscle Walk on March 26, 2011. We have also become MDA volunteers for the Shamrocks for Dystrophy program. We feel that since we have benefited from the MDA, it is a little something that we can do to give back.

• Muscle Walk- We are raising money and awareness for MDA. The actual walk will be March 26. Me, my husband, our 6 children, and our parents will be participating together. You can see our muscle walk page here.
• Shamrocks for Dystrophy- Have you noticed any stores or restaurants with the little green shamrocks hanging up? This is another fundraiser that helps raise money for clinic visits, the summer camp, and research. The way our family volunteers is that we go to specific stores that participate and simply thank them. We were given fun incentives that we can pass out to the cashiers and other workers. It is nice for these companies to put a face to what they are doing.

I like feeling like we are doing something to help or contribute in some way. There are so many wonderful organizations out there that benefit Muscular Dystrophy in some way, and we are thankful for all of them.