Acceptance

These past few months I have accepted more than I was truly ready to. I'm in awe of how Wyatt, Wynston and sometimes even Patrick have done it better than I have. They would probably disagree with me but perspective is everything. As I look back and see how far we have come from April 21 till today I see a rocky road that has not been easy but I also see a family who is started to accept the new normal and living everyday. Seriously though, don't let the smiles and the laughs disguise the heartbreak, the grief, the sadness and fear we feel everyday.

It has not been easy to watch my child figure out life needing someone to help with almost everything. He has accepted some things and has gotten better at asking for help. He is realizing that he can't do things he was once able to do just 4 months ago. He actually told me the other day, "Mom you know it's been 3 months since I could walk." My heart broke but I totally understood, it's hard to imagine that this is just the beginning of our new life.

Even though he knows in his heart that he can't walk it's hard to accept that you have totally lost the ability to take even 1 step. Can you remember being 16??? You never wanted your mom to help you in front of someone you thought was cute. Well, recently while at the orthodontist he fell because he didn't want to need my help. He was finished with his appointment and a young girl walked in to be seen by the orthodontist. I saw her and I knew he didn't want to need my help to get into his chair. (Luckily, he can still push up and pivot for transfers). I put his chair close but couldn't get it just right because of all the equipment. I saw him push up off the chair and I wanted to let him do what he could but he fell and my heart shattered. He didn't fall hard he just melted to the ground. Luckily I was able to scoop him up and "no one noticed" but us... I hurt for him because I know what he was trying to do or actually trying NOT to do. We talked a little about it after we got home and he said, "I just thought I could get there." We agreed that he cannot attempt to transfer alone because it could be very bad. After that he accepted other ways to use the bathroom on his own so I guess he made the leap of accepting it a little better.

With all of it we are finding our way. The grief comes and goes. We have so many things we want to do and can't or maybe we just haven't figured out how to yet.

Our past normal is what we want but the new normal is what we have and now to figure out how to blend it.

Our life is harder and not the same as before, and I can only hope we don't have a repeat of when we first heard the word Duchenne and lose the people that mean the most because we can't do what we use to do.