Happy Birthday, Rachel... and back to the blog.

It’s been awhile. Blogging took a back seat since last August. Last summer was tough. With both girls developing sepsis suddenly (Janneke in July and Rachel in August), we needed a break from a few things.

That doesn’t mean I wasn’t writing. 

For whatever reason, I found blogging to be extra challenging after the summer. Maybe it’s because I sometimes wonder if blogging is too personal. Or blogging becomes self-promoting - “whoohoo, look at our family.”


I am aware of the power of story.

Flannery O’Connor is associated with the quote: A story is a way to say something that can’t be said any other way.

I guess that is part of the why we keep writing -and now blogging- again.

Eleven years ago today, we welcomed Rachel Joy into our family. Eleven years, we took our first steps in this journey of new normals, feeding tubes and wheelchairs. It’s been eleven years of searching for a rhythm we can call familiar.

In preparing for my recent address on resilience, one article came to my attention - and I haven’t forgotten it. Published in the Journal of Family Studies, Welcome to Holland: characteristics of resilient families raising children with severe disabilities (Knestrict and Kuchey 2009) looked at 17 different families.

In addition to finding a positive relationship between healthy socioeconomic status and resilience, “The study also found that having the time and the ability to reflect was a key to reconfiguration, which is seen as crucial in the development of resilience” (Knestrict & Kuchey).

This part stood out as soon as I read it: having time and the ability to reflect.

These are often elusive gifts to many families who are living with disability. I am thankful for the nursing support and respite we have; I truly see them as gifts that allow me to exhale. 

Perhaps that was what the gap from August to now with blogging was - time for reflecting. Let’s call it that.

The authors go on to describe that resilient families were ones who created a routine, albeit unique and foreign to others, and from this routine came a rhythm, a framework that the whole family leaned on.

I love the expression of rhythm. When I taught poetry, we explained rhythm as a literary device that includes long and short patterns through stressed and unstressed syllables. It is a measured motion that creates identifiable patterns.

I’m going to draw a parallel here: This rhythm in our life is a process of trying to include all the ups and downs, all the loose ends and sorted pieces, and create something familiar. And we do feel as if we are constantly in motion. The hope is that our motion is mostly measured - and less chaotic.

Does this make us resilient? That seems somewhat presumptuous. I feel as if resilience is a describing word for the epilogue of a book: And they were a resilient family that withstood adversity and hardship. The end.

We’re not at the end of our story.  In the meantime, we are forever seeking ways to thrive - not just survive - but that takes tremendous energy, time, and confidence (financial, emotional, spiritual) to move forward.

Recently, I heard a song that has stayed with me. It’s by Moe Clark, and I am drawn to the line I find grace in the simple things. In searching for routine-that-turns-into-rhythm, I have to remind myself to look for the simple things, to be content with the small steps.

And in those small steps, I want show the importance of doing this life together. I want to help other families find rhythm too. 

We are thankful for Rachel’s eleven years. We are thankful for the joy she brings. We are thankful for her smile, for her awkward-but-perfect elbow hug, and for her foot rubbing. She exudes a profound love that we can’t quite articulate in a word, so we continue to tell the story.

It’s not all roses here, and I don’t want to tie this up with a pretty bow; it is a story that ain’t over.  



(So, it does sort of look like things have changed with this website - a sort of “whoohoo, look at me.” I’d love your feedback.)