So while I was sitting here beginning to write this entry I was really feeling sorry for myself. Here I am again three years after my first operation, having the same exact one, for a second time, before the age of 30. I started to get upset, angry and I shut down. So I actually walked away from this entry a few times. I didn’t feel I was going to be able to get across what I wanted to say until today.
Today I woke up with the same grumpy attitude I have internalized inside for days. Don’t get me wrong, I have had tremendous support so far. My family has really stepped up to help us with what we need. My sister in law came all the way in from Pittsburgh to stay with us for a week, my sister took Michael Jr for a few days, people have provided us with meals to help get us by. The overwhelming amount of help has been amazing. So today I suddenly realized that while yeah, this sucks and I can’t lift my kids, I can still see them. I can still sort of hold them on the couch. I can play with them in just a very modified way. All being necessary so that I heal correctly and go back to being the mother I want to be for them.The mother I want to be for them is a mother who is proactive with a purpose. You might wonder what I mean by that. Everything I do for them I want it to have a purpose. l want there to be a reason I am doing it for them, and not just simple reasons such as I love them or want to see them happy. But for reasons that will make changes for them. Reasons that will shape who they become as adults. I could absolutely sit here and complain about my current pain (which is pretty high on the scale) but I have decided I am not going to allow myself to go there. I have a mission for my kids and that is to be purposeful in everything I do.
Recently, I have interacted with a lot of mothers who are on the fence when it comes to going public with their child’s BWS diagnoses. I completely understand the majority of reasons not to. Some have said they fear their child will be bullied, some want it to be something their child gets to choose to share as they get older. All are valid reasons and I can totally understand them. What I will say to those mothers is do not feel judged for feeling how your feeling. All you need to do is be purposefully proactive with respect to however you want to handle your son or daughters syndrome. If you decide to keep it private than truly have a purpose for that. Be proactive with your decision and for those that disagree, do not let them get in your way.
I obviously have chosen to have the world know about my son, and it is scary as SHIT. People are mean and hold nothing back. So if you chose to go the route I did be prepared. But at the end of the day I DO NOT CARE. My purpose for him is that he gets all the care he deserves. I have had people tell me that I am allowing BWS to define my son. I look at it as the exact opposite. MY SON is defining what BWS is. He is making the rules for himself. He is showing BWS how he is going to incorporate it into his life. Owen shows BWS how he is going to ALLOW it to affect him or not, and in what way. I look at it like the situation I am currently in. I can either let myself be defined by my back issues, or I can use them to help figure out what my purpose is. Just because we embrace something we have that may not be looked at as a positive thing, does not mean we are letting it define us. At least that’s how I look at it in my mind. Even though our family has been dragged through the mud online I honestly could care less. Sure, its hurtful, but at the end of the day I would do everything I have done so far exactly the same. Like I said, I am a mom who is proactive with a purpose. My purpose from the beginning is to give our kids the appropriate care and screenings they deserve. Our families purpose is to make BWS known and let me tell you, no back surgery nor nasty words are going to stop this mom..