I'm here if you need me

It's been a while since I have posted because life has thrown us a few gut punches recently. Besides the big life changing event of Wyatt no longer walking, we received news that one of our very first DMD friend's son passed away from complications after breaking both of his femurs. To say we were devastated is a total understatement. I had been in touch with my friend once they admitted him to the hospital but obviously none of us were prepared for the outcome. On Friday night Kim called, she was waiting on her husband and family to make their way to the hospital. When she told me that Barrett had coded and they were working on him I told her "I am not getting off the phone with you, I'M HERE IF YOU NEED ME...FOR AS LONG AS YOU NEED ME." I wished I could have been physically with her at her time of heartbreak. It's a terrible feeling to be so far away when you know someone needs you. I left to be with her on Sunday and was able to spend a few days with her and her family to grieve and hear stories of the good times they had with their son in his short life.

I made plans to head to Texas that weekend but needed to make sure someone would be able to take care of Wynston while we were gone. My sister called knowing what was going on and said those beautiful 6 words...I'M HERE IF YOU NEED ME. So I put her to work. She took care of my little guy like a champ and I was able to be at ease while Patrick, Wyatt and I were away supporting our dear friends.

It was heartbreaking being there but many times over the 4 days I thought if the number of people someone has at their funeral is any testament to how much they are loved the Damron family is loved beyond measure. There was a revolving door of visitors the entire time but Kim and I were able to talk about the complications DMD boys have after trauma from a fall and the terrible side effects of being on steroids for over a decade. You see steroids are a double edge sword...they help keep the muscles stronger for longer, including the heart but the side effects like osteoporosis, weight gain and poor behaviors make you question if they are worth it. It's times like this we wonder if our decision of starting steroids at 2 years old was the right one but you know you have to make decisions in the journey with DMD and remember you make the best decision at that time with the information you have. We talked about where do we go from here often during our visit. Kim wants to make sure no other family goes through what she is going through and I will be by her side. Barrett was diagnosed with Fat Embolus Syndrome twice and both times the doctors were not familiar with it and were unsure of the management. You see the bones of boys with DMD are brittle and it puts them at a higher risk for this complication. As a parent with a DMD child you know the risk but the management is the hard part and there is not enough information out there on treatment when it happens. Kim looked at me with a new determination and I looked at her and said I'M HERE IF YOU NEED ME, we will work on it together. As we begin reaching out to the experts to help get this initiative started, please hope we have the strength and patience to do the research and be able to make a real impact on the life of our boys.

We came home the day after the funeral and that is when I came up with the title of this blog. That night everyone was exhausted and my brain was on overdrive. Obviously this weekend was not about me or how I was feeling but when I got home it was hard not to think about how easily this could be my family going through it. I needed a few minutes by myself to take a break and clear my head. While getting Wynston ready for bed, I told him good night and that I love him and that I will be in the living room for a bit to just have a minute to myself. Then my 12 year old looked at me and said, "Mom, come here" I walked over, he gave me a hug and said those 6 little words...I'M HERE IF YOU NEED ME. I hugged him so tight. I guess we are doing something right with our boys because those words came out his mouth so easily I knew they came straight from his heart.

So after a few days of trying to understand how in less than 1 month all of this has happened, I realized that it is in times like this you the number of people who really are THERE IF YOU NEED THEM. Remember to treat others as you want to be treated and you will be blessed the same way.