Surgery # 8. The boy has had more trips to the hospital, more poking and prodding, more surgeries than any of his friends, and most of the people I know, combined. If I didn't know any better, I'd think he's trying to compete with his father--love ya, babe:)! Through all of it, his strength, bravery, and sense of humor have never wavered. He's much tougher and more resilient than his mom will ever be!
Though we count our blessings the condition is treatable, it has been a VERY long and frustrating process. No path to prevention. No cure. No treatment other than extremely invasive surgery as often as every 6 months. Countless doctor's appointments, hospital visits, late-night pharmacy stops, and emergency phone calls from school have all become our ugly companions.
But, as with all terrifying or worrisome things in this world, there is a light of hope and appreciation at the end of the seemingly never-ending tunnel, if we allow ourselves to see it. Our journey, while not completely unique, is ours and ours alone. The decisions we have made, the outcomes we both mourned and celebrated, the constant niggling that results from a perplexing diagnosis are all now woven into our story. Our family story. Just us against the world!
Even in today's society with information available at our fingertips and easily accessible hot-lines, chat rooms, blogs, on-line support groups, etc., much of our journey has been solitary. Yes, we have the overwhelming support of our families, friends, and co-workers, and we've even discovered a mutual friend who's son has the same diagnosis. But I have yet to find an outlet where I can share our story, while gaining knowledge and a sense of camaraderie from others going through similar circumstances. I've researched and blogged and commented and reached out, but the common community is either quite small, or we are all too busy with our regular lives to foster more diagnosis-driven relationships. Most people have never heard the term 'cholesteatoma', and there are no colored bracelets or well-funded charity organizations representing our plight.
So, it's been a 'Family Thang'. And that's fine with me. We take care of our own. We have forged our path and persevered. After all, what doesn't kill us...
The frequency of the surgeries have lent themselves to forming some interesting traditions and habits; beginning with the night before surgery. The boy gets his choice of dinner. Inevitably, he selects steak, mussels, or lobster (what can I say...he's a foodie!). The morning of surgery, he showers and puts on fresh, comfy pajamas, with a shirt that buttons or zips, instead of going over his head (made that mistake only once!). We make up the family room couch with pillows, sheets, and blankets, in preparation for his arrival home post-op. My husband and I pack a goody bag with all the essentials to keep our minds and fingers occupied during the long hours in the waiting room.
We are blessed with a wonderful team of doctors and staff, as well as a beautiful hospital and top-line level care. The boy looks forward to his heated gown, which he can control by the turn of a button. When the time comes for him to be wheeled into the operating room, I do my best to hold back the tears, while my husband escorts him to surgery. Once he's out-of-sight, I breakdown; totally and completely, finding myself physically kneeling in prayer. It never gets easier. Seeing your baby on a gurney being whisked away is one of the most heart-wrenching moments a mother can endure.
After returning from the operating room, my husband greets me with a tender hug and I melt into him. Tears now falling freely. Thank God for blessing my life with a partner able to appreciate my vulnerability without passing judgement; lifting me up and sharing his strength when I need it the most.
Composing myself, we venture down to the cafeteria for coffee and a break. The time passes at a snail's pace and all the goodies we brought in hopes of providing distraction, are not working. The doctor appears and gives us the news. We accept it, good or bad, and now just want to hold our son.
We ease him out of his anesthetic stupor, gather his things and make our way back home. My husband drives cautiously to avoid sudden stops and the cavernous pot-holes Michigan is known for. We settle the boy in, and I'm off to get the scrips filled. While out, I pick up some Apple Jacks (a favorite post-op treat the boy eats dry to ease his queasy stomach and rid his mouth of the aftertaste from surgery), Poptarts (innocuous, easy-to-eat, soft-to-chew), and mac n' cheese (seriously, is there anything mac n' cheese can't cure??). Other than surgery time, we never buy Apple Jacks, and rarely have Poptarts on-hand; comfort food at its best...at least in this boy's world:) Truth be told, I'll spend the next few days fixing him just about anything he asks for --before you say it, I understand 'rewarding' with food is a big no-no, but food and drink are also one of the easiest ways to soothe and show love, so in this instance, it applies and I am unapologetic.
So, this story will play over again in just a couple of days. There may be a few deviations, but for the most part, it's a well-trodden path. The best part of each of these experiences is that we are together as a family. The circumstances force us to focus on one another. For a few precious days, our only goal is to comfort, love, and care for one another. Huddling together to protect our little family, the chores and work will wait for another time. Snuggling, cuddling, reading books, watching movies, and just being together are the priorities now. As it should be.
8th time's a charm. And if it's not, we'll face it together. As a family.