joey bear

I’ve teared up about 100 times this week reading and watching beautiful, painful and honest Mother’s Day stories.

One of my dear friends shared her and her husband’s infertility journey on her blog a few days ago. She writes beautifully about owning our stories – beginning, middle and end, even when the story isn’t what we want it to be. Dying to our own stories and trusting that God is writing the best one yet and daring to share what our true stories really look like. Not what we wish for, nor what it might one day be, but what really is.

Her post made me ask myself if I am owning as well as embracing my own story. I often tell people I have accepted Joey’s diagnosis, that peace has accompanied the heartache since the day we found out, but am I owning it? Embracing it? Am I trying to make it sound better or different than it really is?

Motherhood, for me has without a doubt brought unspeakable joy but also immense grief and disappointment. Both disappointment and grief are big shame triggers and many a time shame is the reason we have such a strong need and desire to edit or even rewrite our stories. It’s easy to share the ‘safe’ stuff. The lessons we’ve learned and how now we are so much better because of it. Insights after the fact. Or different ways we’ve grown and matured because of our experience.

I have used tools like denial (“Our son will be healed, completely restored…the end.”) I should clarify that believing in a miracle is not always denial, we’ve taken Joey to multiple healing services and will continue to pray for a miracle until the day he dies. However, I believe we sometimes use faith/religion as a pretend shield to protect us from what we are really feeling on the inside.

I have minimized (“It’s horribly sad, but he’ll be better off in heaven.”) I wholeheartedly agree heaven is a better place (although the best place would be in my arms forever), but again, statements like that often serve as a another shield to hide behind or protect us from the pain deep within. I’ve used it many times.

I have tried to normalize, sometimes to an unhealthy degree (“This is life, children have died young and too soon since the beginning of time – mothers have lost children to war, murder, malnutrition, and various diseases.”) This might give perspective at best, but it does nothing to my own pain and the fact that my child is dying. I’ve tried and can tell you it doesn’t work.

Blaming is one of my default editing tools and defense mechanisms. I remember sharing the news about Joey’s diagnosis with my mom. The fact that it was genetic, faulty genes passed down by me (and my husband) made me feel like I had caused this kind of suffering. I was the reason he would have to die such a slow, horrible death. Fortunately, my mom picked up on what was going on and in a very assertive, loving way told me that there’s no one to blame for Joey’s disease. Truth. However, owning that a horrible disease had put an early expiration date on my son’s life and that maybe “this happened so that the works of God might be displayed in him” (John 9:3), was harder at first for me than taking the blame though. It is always someone’s fault, right?

Then there’s people pleasing, a dear friend of mine. Afraid of what people might think or how much they can handle I have given many ‘edited versions’ based upon what I think they might want to hear (“This pain is unbearable but I know I will be ok.”) When really I have no idea how I’ll get through this.

A grief therapist I met at the NTSAD conference last month used the term ‘hugging the cactus’. We have to feel it all in order to heal and move on. The stuff that scares us, makes us feel small, makes us want to run and hide, makes us wish we didn’t have to wake up to greet another day, because it is all part of our story, part of the calling we have received.

I’d say I am in the messy middle of my story and I might be here for awhile. I mull over deep, deep questions with very few answers. Aware that I am forever changed but unable to see where I am headed. I often feel stuck and unable to move on and that’s scary and uncomfortable.

I used to think motherhood had taken me on a detour of:

waking up numerous times a night to check on my youngest, turning him to avoid bed sores

filling multiple syringes of various meds in the morning and at night

spending a large chunk of the day on the couch holding a stiff little body, unable to move

avoiding small talk with people that don’t know about our situation afraid they can’t handle the truth

feeling guilty about not spending enough time with my oldest

envying what other moms have and grieving what’s mine

writing birth announcements as well as drafting an obituary

but I’m starting to embrace this as part of my very own messy, ugly, at times excruciatingly painful yet beautiful story.

It’s not what I wanted but it is what it is and at the end of the day my life and my story is worth nothing to me unless it’s used for and by Him who ordained it in the first place. I trust Him with mine and wait expectantly to see how he will use Joey’s story.