Finding Joy in the Midst of Challenge

“Why does everything always have to be so hard with her?”

With wet eyes, this is the phrase I heard leak from my lips in the parking lot of Home Depot this past week. This was a “woe is me” moment for sure– probably not my most shining mom-moment, but my honest feelings nonetheless. This jaunt to Home Depot was one of the rare moments that Chris (husband) and I have alone to talk without the interruptions of three not-so-quiet voices from the back seat. I’m not entirely clear on how the conversation guided us to this moment, but there we were. The words were out in the universe and I couldn’t take them back. No– I didn’t want to take them back. I was frustrated. I was so completely drained and utterly depleted. Brooklynn had experienced some changes at school and we were noticing an increase in challenging behaviors and it had led to a feeling of burn out.

In my frustration, I started to compare my experiences with Brooklynn to my experiences with my other two children:

Things are so much simpler with Mila and Lincoln.

I can communicate and rationalize with Mila and she is so independent.

Lincoln is meeting milestones without thought; it’s so easy.

Why isn’t it like that with Brooklynn?

Even medically, we overthink everything.

Is she blinking too much?

Is that a seizure?

Her nose is running– I think it may be a cerebral spinal fluid leak.

Why can’t a runny nose just be brushed off as a runny nose?!

I’m embarrassed to share these thoughts and I feel shameful for even thinking them.

I feel a sense of urgency that I should share how deeply I love Brooklynn and that her presence in my life has been endlessly enriching. She (her person) is NOT a problem. The circumstances of her medical condition and care, however, lead to many very challenging moments for me as a mom.

She is being followed medically by a large team of specialists: geneticist, neurologist, neurosurgeon, ophthalmologist, physiatrist, and developmental pediatrician. This is on top of her CPSE service providers: SEIT (special education teacher), parent trainer, speech pathologist, occupational therapist, and physical therapist. Beside the endless shuttling to appointments, each of these very skilled and devoted professionals provide us feedback, activities, and practical exercises that we can be doing at home to support Brooklynn’s skill development.

What does this look like? EVERY MOMENT IS A TEACHING MOMENT. When we are playing in the playroom, eating dinner, or driving in the car, there is always an agenda–an angle.

Can I embed a speech goal here?

Is she sitting with the best posture to activate her core muscles?

Uh, oh. She didn’t use her pencil grip quite right just now… I better stop the activity and support that skill.

And I want to do these things because I know that these skills will help her to be more independent and skillful with the use of her brain and body, but here's the problem. Sometimes I don't want to play therapist. Sometimes I want to just enjoy my kid. I want to play and be silly with her and not think about the mountain of skills we “should be” addressing. I want to just be Mommy. I want to experience the joy of simply being with Brooklynn– and she deserves that time as well.

So here I am with this question again. “Why does everything have to be so hard?”

This question was on my mind as I sat in church this Sunday. Brooklynn had a difficult morning and my hyperactive mom-worry-gene kicked in. I had concerns that were medical in nature and my mind kept wandering back to it as I was trying to listen to the sermon, but there were a few points that made their way through the ‘noise’ in my brain.

“Gratitude is the only soil in which the fruitful tree of joy will grow and flourish… In the same way you can’t have joy without gratitude, you can’t have love without joy.”

This just floored me. I have NOT been coming at this from a place of gratitude, but rather I have been indulging self-pity. What if I shift my focus? What if I focus on all of Brooklynn's remarkable qualities and the new life her condition has brought to our family, and intentionally express gratitude for all the ways we have changed and grown as a result? What if gratitude leads me to a new place of joy that is not based on our temporary circumstances? What if that place of joy gives me more capacity to love my family well?

Does this mean that things will not be difficult? No, of course not. There will still be moments when things are really hard and I feel overwhelmed and defeated, AND I am also grateful for the ways in which we have grown and for the joy that I can experience in the midst of these challenges.

I have chosen to set aside specific times during which I will simply BE with Brooklynn. I will not come with an agenda. I will not address goals. I will simply be present with her. I will be Mommy. I will celebrate and bask in who she is. I will choose joy.