A little over a month ago, I wrote about the nightmare process of trying to get the correct headrest for my little boy’s wheelchair. What should have taken six to eight weeks has taken almost a year. After numerous phone calls and e-mails to the local offices of National Seating & Mobility, I went national. I wrote letters to their corporate offices explaining in explicit detail the run around I had been given for the past ten months and that this kind of service was intolerable. I gave them twenty-four hours to respond. I sent the letters via fax and via certified postal mail so there would be no question as to whether or not the letters were ever received. My phone rang the very next morning.
The voice on the other end of the phone was calm, but not condescending calm. She seemed genuinely concerned about my situation and after listening to my fifteen minute rant which basically repeated what I said in the letter, but with tears, she promised that she would see why Joey did not have a headrest. And then she said the words that I wanted to hear, “Joey will have a headrest, please do not worry about that anymore.” Now, a small part of me, the jaded, cynical part, didn’t believe her. As a mother of a disabled child, I’ve dealt with countless issues during the past eight years regarding Joey’s care. There are the interrogations from insurance companies questioning why my son needs diapers (I had to ‘prove’ he couldn’t walk to the restroom – hell, he can’t even sit up or stand), or why it’s medically necessary for my son to be transported to the hospital by ambulance (hmm, you’re right, his lips were blue and his seizures were non-stop, I should have made the forty mile drive myself instead of calling 911). It’s never easy and it’s almost always a battle. But there was something about her voice and damn’t I needed to believe that my child was going to finally get his headrest and he would once again be able to ride in his wheelchair. I’m trying to adopt a new mantra, I want to be able to have faith and believe in everything until it’s disproved. I want to believe that people are really concerned and do care. So the decision was made to believe in her and have faith that very soon Joey would have his headrest.
That phone call took place on a Thursday morning. I anxiously awaited a phone call from her on Friday, but her call never came. I reminded myself that she was probably researching how in the hell a request for a headrest ten months ago had now escalated to her receiving a letter from an irate, emotional and outspoken Sicilian who could make Tony Soprano cry. So I cut her a little slack and decided to give her until 10:00 a.m. on Monday to call, but not one minute past. Monday morning arrived and at 9:55 the phone rang. It was the call I had been waiting for. She began the conversation apologizing for all of this mess. She went on to say that she could see from phone and e-mail records where my calls and e-mails went unanswered and the few times they did reply, it was less than informative. She went on to tell me that the breakdown of communication happened at Joey’s school. Joey’s physical therapist made the initial request for the headrest and ordered the wrong one. This somewhat surprised me as she knew better than most how much Joey needed the headrest that is shaped like a horseshoe. The intense cover-up that took place once the wrong head rest arrived last April leads me to believe that someone knew they screwed up. Joey’s therapist tried her best to convince me that he would benefit from a neck brace that would help him hold his head up while he was in his wheelchair. At no expense to me, she even ordered it and put it on Joey. Nice try – what Joey would benefit from is people listening to the parents, doing their damn job correct the first time and when that doesn’t happen, own up to the mistake and fix it! With the correct headrest, there would be no need for a neck brace. A neck brace that severely limited Joey in moving his head and gave him little range of motion. My Joey can’t speak, but it was very clear how much he hated that brace – he pouted and grunted when it was put on him. Since he is unable to swallow, he drools quite a bit. That drool would just sit on the neck brace and it gave Joey a lovely rash on his face. Yes, this was all benefiting Joey quite well. You know, I’m a pretty classy mom. But mess with my children, and I will turn into an ass-kicking mama of a nightmare unlike any you could ever imagine. So that’s what I did.
Apparently, the powers that be at National Seating & Mobility agreed with me. Joey now has the headrest I originally requested a year ago. It was recently installed and the biggest smile appeared on Joey’s face when I sat him in his wheelchair for the first time since last August. His head no longer falls to the side and he has no need for that ridiculous neck brace. This shouldn’t have taken this long , but it did. It’s sad really – that a parent has to fight this hard for the simplest of things for the disabled child. For over six months Joey hasn’t been able to sit up unless someone holds him. His life has been in his bed or the occasional car ride to the doctor. No walks outside, no play dates in the park – nothing. Imagine never being in the sitting position. Add to that, the reason you cannot sit up is because some arrogant moron either ordered the wrong part or took it upon herself to order what she thought would be best for you. I think at their core, things are never quite as complicated as they seem. I believe it’s the arrogance and ignorance of others that muddles the situation and often makes them search for a complicated answer to what is a rather simple problem. I thank God for giving me the strength to never see anything as an impossibility, especially since I have a disabled child. Don’t get me wrong, it’s not that I inhibit some super power or that I’m extremely courageous. I’m just very stubborn, a little bull-headed and absolutely relentless when it comes to the needs of the disabled. We all should be, for so many of them, we are their advocates, their voices. And I make sure everyone near and far hears mine.
“It is not enough that we do our best; sometimes we must do what is required.” ~Winston Churchill