My battle has layers. The outward battle is what everyone sees. Sadie's struggle. Taking her to all the various treatments and therapies and then making sure to implement that in our daily life. Scheduling and driving to countless doctors appointments and watching my little girl get cut, pricked and zapped over and over to try and find an answer. I have to make sure her needs are met and that she can function physically and mentally day to day to her full potential. This is what everyone sees and says "wow how do you do it?" Well it's all I know. I have been doing this since Sadie was 12 months old. I was herded into the Autism awareness uprising and have found myself here. You would do it too, without a thought if it was your kiddo. This my friends is the easy part.
Underneath that struggle of trying to find Sadies "real diagnosis" and keeping up on her regimen is the struggle to make sure that everyone else is doing the same. Last Thursday as I was driving to our Orthopedic doctors appointment in San Diego. I gave myself a major pep talk on how I need to get this doctor on my team. He is supposedly the best in Southern California. He did Sadie's surgery and we have been seeing him for a couple years now. He's just so dismissive and he focuses on one problem and then pats himself on the back for temporarily fixing it. If he was looking at the full picture he really should have been the one to figure out that Sadie had a myopathy and maybe not cerebral palsy. "This will get his attention" I thought. "Now he will listen to me." And then in my head I wrestled him onto the ground, put him in a head lock and made him answer all my questions satisfactorily and apologize for not ever listening to my ever so wise physical therapist and denying all those leg brace requests! AH if only I was one of those people who could act in the moment (minus the wrestling). In that appointment I showed him how tight Sadies surgery foot and leg had gotten. I then mentioned how unhelpful it was when he wouldn't approve the full night leg brace right after the surgery (I had to go through another doctor to finally get it!). He said "orthodics just make muscles weaker" This is when I should have said "Hi have you met my daughter before, please throw out all knowledge of what works and what doesn't because she defies all logic (including your cerebral palsy diagnosis). PLEASE TAKE NOTE: SHE IS NOT A NORMAL CASE!!!!" I didn't say that, he just, with all his might pushed Sadie's foot in the neutral position and said "see the surgery worked!" He might as well have said "TA DAAA!" at the end to help his forced enthusiasm. I hate that when I get angry, I get teary. Damn you emotions (sorry). I held it back and squeaked out "but she can't straighten her knee". He suggested Botox AGAIN. I said "botox stopped working, that's why we did the surgery and why would we do botox when we don't know what myothapy she has?" He responded with a "Well then I guess we will just have to wait and see won't we?" and then he STOOD UP! I hate the standing up! Really?! Its only been 5 minutes! It's so dismissive as to look down on you and say "were done here."
"Wait!" I said holding up my iPhone and pointing to my notes. "I have more questions!" He slunk back onto that little rose colored stool and answered me shortly with "wait and sees" and "I don't have answers for you" and "no I don't think Sadie should have altraflex leg braces to wear during the day" It was over. I was flustered. As an act of defiance I didn't even check out. Ok so I knew that he wasn't going to have "the answer". Please know that I don't swear off doctors that don't have the magic cure. I swear off doctors who refuse to look for one, or at least refuse to actively help my cause. In my family when someone is overly tired, over it, or so very done- we call them DONE-ZO. This doctor is DONEZO!
Making sure everyone does there job is stressful. There is always a test to follow up on. Referrals I sometimes have to plea for. There's Orthodics and equipment I have to insist on and then I have to make sure every party received the prescription. I have to call on a regular basis to try to get an earlier appointment somewhere. At school I have to make sure everyone is doing what there supposed to be doing for Sadie. It's important for me to take the time to be a Class Mommy/ Secret Spy to make sure all is well and good and that her IEP is being followed. My theory is that not every one cares about my kiddo as much as I do so I need to be the driving force to spur those individuals into action. I get frustrated because I am not a doctor and I don't know what I'm looking for so for now I'm just the mom who has to figure out how to get them to do there jobs.
After that underlying battle is yet another layer. It's the " how the heck are we going to pay for this?" struggle. My husband has a steady job with an average income. I stay at home and do occasional hair on the side for extra money. In any other situation we would be fine and dandy but add a special needs child into the mix and your expenses sky rocket. I am constantly battling insurance, filling out applications for state programs and applying for any funding for therapies I can find. In this battle I get easily overwhelmed. Really I need a little office with like ten cubicles and computers. And in each cubicle is an assistant to wait on hold and search out programs and fill in Sadie's birthdate and medical condition for the millionth time. This battle is why I'm addicted to Red Bull.
Then underneath it all is my emotional battle. I seem to ignore this one as often as I can. Tending to the other struggles in order to ignore it. I ask myself, "Am I doing enough for Sadie?", "How is this effecting Bro?" When Sadie was diagnosed with Autism I was devastated but she has overcome so much of it. When she got the diagnosis of Cerebral Palsy, I was sad but I thought we had an answer. We were told that the good news about Cerebral Palsy is that Sadie won't get worse, she can only get better. I was ok with that. I was determined to get her walking. She WAS going to get better. But she didn't. Somedays she was worse and some days were better. We knew we didn't have the "right" answer. Now that I've fought so hard to find it I feel like I just don't know if I want to hear what it really is. A myopathy isn't good news. It usually means things will just get worse. I'm not ready to hear that. I'm not ready to take that in and feel it yet.
The easy part is helping Sadie day to day. The hard part is behind the curtains. I'm pretty sure that this is never ending. It's going to be our life. It is our life and I'm okay with that. In high school I was on the Varsity wrestling team all four years (ya I know, maybe I'll tell ya all about it someday). Anyways we had to do sprints every practice after being dead tired. I never wanted to show weakness in front of my male teammates and so I put on my determined face and somehow got a second wind to push through those sprints. When I'm getting tired and bogged down I can vividly remember that rush of powering through and sprinting back and forth across the wrestling mat or on the muddy field. You just put on a smile and push through it knowing your stronger for it at the end of the day.