I wanted to share this article that I wrote about an experience that I shared with Madilyn a few weeks ago. I am a writer for SpinaBifidaKids.blogspot.com. Since this is Spina Bifida Awareness Month, I wanted to share this with all our friends and family as well.Spina Bifida comes in many different packages. We each share similar aspects of it but it is very personal to each child. Most people would never know that our Madilyn has been through so much by just looking at her.

This past Thursday was one of those days.....

Some background info:
Last year at this time Madilyn was confined to her wheelchair. She then progressed to her walker and then finally she was able to try to walk again. Complications from Spinal surgery and the struggle of her bones healing in her right foot had her immobile. She has developed lymphedema in her right leg. When she stands on her leg too long her foot swells to the size of any shoe she wears. Over the last year it has progressed to include her right ankle.

Now back to Thursday.....Madilyn's school was having their "Boosterthon Fun Run"! This was a huge deal. After much discussion, we agreed to let Madilyn participate this year. The first graders were challenged to run between 25 to 35 laps. The course was 50 meters. Needless to say...Madilyn was soooo excited!As I stood there waiting for the event to begin...those tears started. Here I was in this big crowd of parents with tears running down my face. I couldn't stop them. I thought I would just pretend that I was sick and not feeling well because I couldn't explain those tears to anyone. Especially after the race began.

It was watching Madilyn run.......and fall.....and look at me. I did not go out on the course and help her back up. This was the hardest thing I have ever done. I just told her she could do it. I think my exact words were.....Madilyn, get up and keep running. Then it was....Madilyn, get up and just walk....don't stop...you can do this! I am not sure how many times I repeated those words.

Madilyn completed 32 laps (2 miles) on the course that morning. She was so exhausted when she finished. Parents were allowed to walk the final lap with their children. It was our victory lap. I held her hand and we crossed that finish line together. This was one of those moments that only those who share our journey or those who are close to our family would understand.

Madilyn did overheat.

Madilyn did get nauseated and had to take Zofran.

Madilyn's heart rate did get really fast.....and that scared her a little.

She did beg me to take her home but I convinced her she could make it the rest of the day at school.

Madilyn's foot swelled to the size of her shoe.The smile on her face after she recovered from the event reassured me that I did the right thing by encouraging her to get up when she fell. I hope that this moment will stay with her when things are hard and difficult.