Bend, Don't Break

I feel like it's about time to get back on my horse and try to blog about something other than loss. I'm getting there, though loss is what fills my mind, lately. I'm sad. I'm sad for the wounded survivors trying to move forward without leaving their love behind. Yet, I'm hopeful too. Long days of suffering are over for some replaced with the peace of heaven and that is something to sing about.

I found a great source of solace on my trip to Phoenix. I met a group of women that I could relate to as mothers of medically fragile children. I had met some of them virtually through the trach message boards years ago. We had, I felt, an instant connection that I haven't easily found with other mothers.

My fortune while dining out with new friends

When I became a mom, things were not usual. My baby couldn't eat with his mouth, or cry audibly, or ever fall asleep in my arms without being hooked to machines. He came with nurses and alarms, odd holes and tubes scarring his body, and CPR instructions taped to his bed. He came with insurance woes, frustrating medical supply companies, and a team of specialists that scratched their heads wondering how he'd survived and speculating how his body would fail next. And bills, oh those bills. He came with loads of medications and intense therapy sessions, and a grueling round the clock schedule of care that turned us into skittish owls, and our home into an open door clinic with a steady stream of team members all working towards a multitude of minute goals. Today, Ben will tolerate room air for 10 minutes. Today, Ben will swallow 5 ccs of thickened liquid. Today, Ben will grasp a toy.

He did all that and more, of course. He soared. Some of my new friends haven't been so lucky. They are still in the thick of it and some won't ever be able to get out of it on happy terms.

When I was a new mom I felt like no one understood our life, even those who loved us most and tried. Some felt it wasn't worthwhile to work so hard and use so many resources to keep one sick child alive.  Some felt we weren't doing enough. Some just didn't know how to help or what to think. Neither did we.

Lest you think no one was there for us, I assure you, we were inundated with support. I still marvel at how it all got done. We may not have survived with our marriage and sanity intact without all those understanding friends and family and employers. You know who you are and we love you for it.

But the road was still lonely somehow and frequently misunderstood. We encountered many misconceptions. Strangers were often horrified to see us in public and seemed afraid of catching something. People with trachs can live normal, happy lives. They are allowed to leave the house. Yes, suctioning sounds gross and scary at first, but usually it doesn't indicate illness, it's just daily life. A trach and feeding tube, and even a ventilator are not always extraordinary means to just keep someone on the earth. Often, they are temporary, or make it possible for someone to achieve independence. Keep that in mind when writing advanced directives. Know what it is you fear as it might not be so bad.

People with trachs often can't vocalize because air escapes the stoma prior to passing over the vocal chords. If the trached person can force air upwards either on their own power, or with the help of a device that occludes the stoma, they can make sound.  People with feeding tubes sometimes don't eat anything by mouth. They have a button attached to their bellies or tubing down the nose that provide perfect nutrition. We weren't being cruel to our son when we happily ate dinner out while he rolled cars over his paper menu. We were modeling. The interventions saved Ben's life and allowed him to have as normal a childhood as possible. Actually, they allowed him to HAVE a childhood.

I'm not sharing all this for sympathy. I'm sharing so you'll know how wonderful it was, even after 11 years, to find myself surrounded by a whole group of mothers with so much in common.  We personify the phrase, "Ever bending, never breaking," and frankly, we are pretty fine individuals in spite of, or because of it. It's good to laugh about projectile PMVs, deflated Mickey's, and the you-can't-park-there-you-look-fine "police." If we must laugh and cry our way through this life, it's good to find others who know the language.

Maybe I share it too, so that if you find someone in a similar situation, you won't be afraid to reach out and let a weary warrior talk or sleep or scream. And can all the expectant parents out there just agree to think before saying, "I don't care what it is, just so long as it's healthy," when asked if they want a boy or girl. The unhealthy babies are wanted and worthy too.