When I was a kid, I would do something wrong and my Mom would somehow know. If I didn't feel quite right, she knew. If I was uneasy about something, she immediately sensed it and tried to help. I used to ask her how she knew and she would reply - "When you are a Mom you just know these things."
The other thing I remember was how fiercely she would protect me. If I did something wrong she would call me out on it, but God forbid you did before she did. And heaven help you if you did something to deliberately hurt me. She would as I used to call it, Unleash the Mama Bear. I didn't get it at the time and to be honest it would kind of annoy me of how overprotective she was. My Mom would explain to me that someday if I were blessed with children of my own that I would understand.
Fast forward to today and man do I get it. I would do anything and everything to protect my children. I try to pay attention to all of the little clues. If one of them is upset, not feeling well, or just feeling a little bit insecure, I try to be there for them just like my Mom was there for me. Sometimes I try to catch myself to not become too overbearing. Ron will look at me sometimes letting me know I need to back off which for me is very hard. The apple doesn't fall far from the tree I guess.
Then there are the times where I have had to "Unleash the Mama Bear." As a special needs Mom to Dylan, this happens more times than I would like to admit. I begin to ask myself, why does every single thing have to be a fight. I have been advocating and fighting for Dylan for almost 12 years now and it seems every single week I am on the phone or writing letters to try to justify his needs regarding his disability. It is quite frankly bull shit. Unless there is a treatment or a cure for SMA which there currently is not, his condition will not change. As a matter of fact it may get worse. I have accepted that. He has accepted that. What I can not accept is someone denying him things that he needs to survive.
Most insurance companies try to act like the puppet masters controlling the strings of your Healthcare. You may not see it if you just use insurance for well and sick visits or your annual mammogram, but try to have a medically complex child. You will likely want to pull every hair out of your head. They will try to deny anything and everything. They will deny a new wheelchair for your child even though your child cannot fit it the one he has had for the past five years. They will deny a special roll in bath seat for your child because it is "custodial." They will deny nursing hours because after all we all should have gone to nursing or medical school in our lifetime. They will deny certain medications as unnecessary. They will deny special food for your child. They will deny a cough assist for your child because "it isn't medically proven to be effective for your child's disease." What is even worse is that these people who are denying everything have likely never heard of your child's disease or disability. They are likely not even in the medical field and do not even understand simple medical terminology. But yet, they are the puppet masters controlling the strings on your child's medical needs. It is a totally ridiculous practice that needs to change.
All of these denials and roadblocks to Dylan's care end up in my having to "Unleash the Mama Bear." It is something I have to do all too often. It is something I actually hate doing. It exhausts my mind. It makes me feel tired and upset. But it is something that is necessary for my child's survival. As a parent we are the best advocates for our children. People will try to tell you they are advocating for your child but believe me a lot of these agencies, insurance companies, and medical supply companies have their own interests and profit based needs in mind. You are the one who has to put in the work to make sure your child is getting what he needs. What he deserves. I never just settle for the answer no when I feel it should be yes. Nobody should have to.
I am lucky I had such a strong advocate growing up. Even though I felt my Mom was way too overprotective, I can now say with confidence that my Mother was right. I was lucky to have her on my side. I hope someday my kids feel the same way.
|Dylan and I in Times Square, NY|