Sunday, June 9, 2013
Denial - Not Just a River in Egypt
"Oh sure, she's cute NOW," they would say, "but as she grows her delays will grow too and she will be a burden." So far, not a burden. I guess I'm still living in denial.
As she faced surgery after surgery with complications, I asked for prayers as we went through each one and saw the looks and heard the whispers... "This is serious. She's in denial."
When she was diagnosed with Leukemia our world shattered. But I climbed out of that pit and looked into the future as poison dripped into my baby's veins... one year, two years, five years down the road when she would be cancer free. As we went to funeral after funeral for her little friends, I heard people whisper, "What makes her so special? She's living in denial." And perhaps I was.
A year later as we faced Kennedy's 9 hour spine fusion surgery, people once again thought I was living in denial. They thought I was oblivious to the risks, never knowing that in the back of my mind I was planning her funeral, just in case. Not many people knew that I had a tear-filled conversation with Kassidy's soccer coach, who also happened to own a funeral home, so I would be prepared, should the worst happen. Because just maybe, I wasn't living in denial after all. But no one wants to hear those details.
The next people to tell me I was in denial was a school system who told me that my child wasn't like other children (duh). That I was an over-involved parent in my child's education and that I should just lock her into the "special education box". When I argued back that my child WAS capable of so much more than they were giving her credit for, and that special education is a service and not a place, I was told, very emphatically by a rude lawyer that I was in denial. And so we bucked the system and moved to a place where they believe in my girl as much as I do. (Thankfully here, no one is telling me I'm in denial now except for maybe a few blog readers and a couple skeptics from an old school system.)
A few weeks ago, we went to an ENT appointment for Kennedy. She's seen the ENT literally hundreds of times over her life. It's one of the routine appointments for kids with Down syndrome that became even more routine after she had leukemia because, you see, when your child survives cancer, you get to think about the long term side effects from that poison that dripped into their veins to save their life. Kennedy's first side effect - hearing loss. We've battled it for years with multiple sets of ear tubes that keep falling out because her little body doesn't like having foreign objects in it.
And now it's time. On Thursday, Kennedy will be fitted for a hearing aide in her right ear. Her ENT and audiologist talked to me about it at length at her last appointment. They told me why she needed it (because of the chemotherapy), and they brushed it off like it was nothing and smiled and said they could make it any color she wanted - bright pink if she chose! (To which I balked and politely declined and asked for skin color, thank you very much.) I sat there and took in all the information they threw at me, accepted the paperwork for her surgery (they're replacing her tubes as well), and I smiled and said ok and walked out. I've only told a few necessary people because this time - at least for right now - I'm in denial.
It's such a silly thing in the grand scheme of life... a hearing aide. Lots of kids have them, a couple of Kennedy's friends have them in fact, and I'm sure in time it will no big deal at all. But it's one more thing. One more thing to think about and deal with... and while I'm sure she will rock that hearing aide and it will help improve her speech and it will just become part of our routine and be totally FINE... right now, this second, thinking about Thursday, I am in denial. And I hate it.