Beautiful Trauma

After a decade and a half wiled as a SAHM/caregiver/catechist/volunteer, more professional endeavors have fallen into my calendar of late. Though I'm still all those other things too. 

I was asked to give a talk at the annual PAS conference as the mother of a medically complex child. It was a pediatric seminar on ethics and supporting families through the big decisions that come with these complex cases. The conference was originally supposed to take place in Vancouver, which would have been so amazing, but giving the virtual live talk from the comfort of my dining room was a bit less intimidating. O Canada, I'll see you one day. 

It was an emotional experience, reliving some of Ben's early days and reflecting on the sorrows and joys of this complex beautiful life. The combined traumatic and miraculous experiences of all those "gathered" together to share creates an air of wonder and heaviness that is difficult to express. 

Added to that, Ben's cholesteatoma has returned. He had a CT yesterday to determine the extent, but he's likely soon to be undergoing a series of procedures to empty his more troubled ear of all functional parts and to surgically close it permanently. The hope is that he'll eventually be able to achieve hearing through a cochlear device. It's disheartening to be facing these unknowns just as he's headed off to college. But the hope of good hearing and fewer infections is something worth enduring for. 

In my talk, which happened to fall upon the birthday of Padre Pio, I touched on the challenges of this life and the lives of several of my friends in similar situations. But I also talked about all the ways these complicated experiences challenge the world to be better. 

One example, is the book my friend Ann co-wrote with one of her late son's doctors. It's called, Shared Struggles. They compiled stories from parents like me and medical professionals then gave a parent and professional commentary on the situation to help bridge communication and understanding in this unique relationship. My copy arrived the night before I gave my talk. I first read the chapter I'd submitted, so touched that Ben's story is spreading in new and positive ways. I look forward to devouring the rest of the book, especially the ones I know personally. I need to set aside the crying time though! If you know any medical professionals or anyone with a medically complex family member or friend, they need this book. It's available from Amazon or direct from the publisher at Springer. 

When Ben was a baby, needing 24/7 specialized care, his nursing agency could not cover our shifts and we'd take turns going days without sleep to keep him alive. We were at our breaking point and our jobs were suffering. Our friend, Justin, with no medical experience saw our distress and offered to take over a night to let us sleep. He promised to knock on our door if any alarms sounded or if he was worried. He repeated this offer and eventually progressed to handling feeds, meds, and addressing alarms himself. He and his wife eventually became our most trusted respite caregivers. This experience led Justin to go back to school to become a neonatologist. His personal experience of intense caregiving influences his care of countless medically fragile babies today. One little trach did that. 

I began a new part time job at the start of the month. I'm a Resident Advocate for Birthstone Corporation in training to become a certified life coach. I'll be helping select the residents for our program and walking along with these moms coaching them as they achieve their goals of self-sufficiency. It's a dream job in so many ways. Years back when Jason and I were attempting to adopt a baby, again and again we felt like it was the mother we should adopt, so she could perhaps become stable and independent and be able to keep her baby. In a way, that's the goal now, facilitating the environment for families to thrive. 

It's a busy time of transitions and growth, but so edifying to be finding new purpose. I feel led and renew my surrender. 

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.