Its that time of year again that I sit down to write one of the toughest things I‘ll ever have to write. I ask my family, friends, acquaintances and strangers to donate their hard earned money for a boy that some may not even know, and others who have been blessed to know. I do not ask for help often but this is the only thing I can do as time is flying by and I do not know what the future holds for my son.
Everyday I pray, pace, scream and cry as time is ticking by. I research, read and attempt to understand this disease but it is relentless, and during our annual walk is the only time I feel in control of Duchenne.
My heart is literally shattered trying to explain to a 6 year old that his muscles are failing him every time he falls because his legs are becoming powerless….but its ok, eventually he will get a cool wheelchair that will let him be as fast as his friends. Trying to make him understand that the medication he takes and all the appointments he has are good…..they will keep him healthier for longer and he gets a day off of school. Telling him that everybody is different and has different abilities so not to let others comment about his size or bring him down as he is much stronger in other ways….he can build with Lego like no other I have ever seen. I tell him he is much stronger than anyone else I have ever met, including myself, and then he smiles and there is my hope and faith again….that is what I hold onto so tightly.
So, for my Jahan, I promise to make this the best year yet. I promise to be the best mom and keep fighting for him and with him. I promise to not let that smile fade and not to let Duchenne take it away. He will know he is different, but he will also know that he is special and mommy will do everything she possibly can to stop his question of “Why me?“
We will make a difference, we will save my boy…. I have no other choice, and neither does he.