Morgan Motsinger

@morganmotsinger | contributor
I'm a mother, social entrepreneur, speaker and interior designer. I work with families with special needs children in my interior design company, Annika Interiors (named after my oldest with a rare, degenerative, genetic disease called Sanfilippo Syndrome), coach, speak and dive headfirst into life. I live on the Oregon coast and revel in the magic of the Pacific North West. I believe life is to be lived to the fullest which frequently means pursuing things that are new (and usually feel scary), and to embrace every day as a true gift. My curiosity and love for learning have lead me to multiple business ventures, motorcycle riding, skydiving, and an even greater appetite for knowledge through education and experience.

Waiting to Lose a Child to Sanfilippo Syndrome

I knew this was coming. At least, I suspected it would come. The whir of the oxygen machine, the light from the monitors illuminating a little body in a big bed. Bags of saline and medicine and food hanging from the IV pole — like a medical jellyfish. Sea turtle decals on the doors and large pictures of the ocean on the bathroom wall. In our little aquarium with glass doors and windows for observation by the hospital staff, we are swimming in the unknown. “How is it going to happen? What do kids with Sanfilippo syndrome die of?” I asked the genetic counselor this question within a week of getting my daughter’s diagnosis. Maybe ignorance is bliss, but I needed to stare the shark right in the face — instead of just feeling it circling closer and closer. “Respiratory failure is the typical cause.” Now that we’re in the hospital with a respiratory illness, a blue tube running from the whirring machine to my daughter’s mask, I wonder. I wonder if this is it. In the thousands of times that I’ve thought of her death — every day for the last ten-and-a-half years since that first phone call — I have asked myself an impossible question that has no right answer. How would I like that moment to go? I have thought it maybe would be easier if my daughter would go in her sleep, but then I fear that she would be alone and scared. I didn’t know if I could handle being with her, watching her breaths and wondering which would be the last. Now, though, I desperately hope I’m present. My daughter’s like a scuba diver, but the ocean isn’t outside of her. The waves crash on the shores of her lungs, and I’m reminded that we’re made of water. Still, when the floods come and the dams break, water flows where it’s not supposed to, and there’s wreckage. Her oxygen supply sits on wheels — there are no goggles or flippers as part of her ensemble. I navigate my own flood of emotions: resignation, fear, longing, sadness, anticipation, and exhaustion. I’m treading water. I’m not a good swimmer, but I have learned how to let the flow of emotions come to me. They sometimes come in waves, threatening to capsize me, but other times, they gently rock me, soothing and consoling me. I’ve heard it said that salt water cures all things: tears, sweat, and the sea. I know that to be true because I have let salty rivers run down my face as I gasp for breath between sobs. I have worked my body, pounding out frustration, confusion, and joy as sweat drips down my nose and makes my glasses slide. I have felt the delicious dichotomy of shrinking irrelevance and profound significance as I’ve stood with my feet in the sand and watched the vast ocean stretching out before me. There’s healing in the water. The flow and rhythm. The waves and ripples. The pulse in the fish tank of the womb. My daughter navigated the baptism of water and blood into a new life after gently swimming and swirling and stretching for nine months. I hope I get to care for her body as her soul makes the transition to the next destination. I hope I get to tell her I love her. I hope I get to witness the crossing. I hope I get to mother her and labor with her — in pain and joy and wonder. But not today. Today, we adjust the flow of air, silence alarms when the IV line is pinched, adjust her, check her skin, change her, and rub her legs. Today, her wild hair gets caught on the stickers attached to her chest and the straps keeping the mask tight on her face. Today, I breathe in the scent of my daughter’s hair, touch her skin, and feel a wave of gratitude for the gift of motherhood.

Waiting to Lose a Child to Sanfilippo Syndrome

I knew this was coming. At least, I suspected it would come. The whir of the oxygen machine, the light from the monitors illuminating a little body in a big bed. Bags of saline and medicine and food hanging from the IV pole — like a medical jellyfish. Sea turtle decals on the doors and large pictures of the ocean on the bathroom wall. In our little aquarium with glass doors and windows for observation by the hospital staff, we are swimming in the unknown. “How is it going to happen? What do kids with Sanfilippo syndrome die of?” I asked the genetic counselor this question within a week of getting my daughter’s diagnosis. Maybe ignorance is bliss, but I needed to stare the shark right in the face — instead of just feeling it circling closer and closer. “Respiratory failure is the typical cause.” Now that we’re in the hospital with a respiratory illness, a blue tube running from the whirring machine to my daughter’s mask, I wonder. I wonder if this is it. In the thousands of times that I’ve thought of her death — every day for the last ten-and-a-half years since that first phone call — I have asked myself an impossible question that has no right answer. How would I like that moment to go? I have thought it maybe would be easier if my daughter would go in her sleep, but then I fear that she would be alone and scared. I didn’t know if I could handle being with her, watching her breaths and wondering which would be the last. Now, though, I desperately hope I’m present. My daughter’s like a scuba diver, but the ocean isn’t outside of her. The waves crash on the shores of her lungs, and I’m reminded that we’re made of water. Still, when the floods come and the dams break, water flows where it’s not supposed to, and there’s wreckage. Her oxygen supply sits on wheels — there are no goggles or flippers as part of her ensemble. I navigate my own flood of emotions: resignation, fear, longing, sadness, anticipation, and exhaustion. I’m treading water. I’m not a good swimmer, but I have learned how to let the flow of emotions come to me. They sometimes come in waves, threatening to capsize me, but other times, they gently rock me, soothing and consoling me. I’ve heard it said that salt water cures all things: tears, sweat, and the sea. I know that to be true because I have let salty rivers run down my face as I gasp for breath between sobs. I have worked my body, pounding out frustration, confusion, and joy as sweat drips down my nose and makes my glasses slide. I have felt the delicious dichotomy of shrinking irrelevance and profound significance as I’ve stood with my feet in the sand and watched the vast ocean stretching out before me. There’s healing in the water. The flow and rhythm. The waves and ripples. The pulse in the fish tank of the womb. My daughter navigated the baptism of water and blood into a new life after gently swimming and swirling and stretching for nine months. I hope I get to care for her body as her soul makes the transition to the next destination. I hope I get to tell her I love her. I hope I get to witness the crossing. I hope I get to mother her and labor with her — in pain and joy and wonder. But not today. Today, we adjust the flow of air, silence alarms when the IV line is pinched, adjust her, check her skin, change her, and rub her legs. Today, her wild hair gets caught on the stickers attached to her chest and the straps keeping the mask tight on her face. Today, I breathe in the scent of my daughter’s hair, touch her skin, and feel a wave of gratitude for the gift of motherhood.

Community Voices

I was 27 when they said she would die

I was 27 when they told me she would die before me.

She would not bury me at 89 or 92 or 99

But I would bury her at 6 or 16 or 19

Would I put her body in the ground

Or let the ashes come home with me

I asked my dad before he died

To make an urn

With yellow inside

For my bright sunshine girl

I was 27 when I learned I would watch her die

When she would take her final breath

I had to accept that my role in keeping her safe

Safe from the tragedies of the world

Was a task I had given myself

An impossible task

To keep her safe from death

When death was what was promised

By the code in her genes

Her genes that made her eyes a stormy blue

Her hair champagne in the sun

Her lips full and pink

Her hands and feet so slender and small

Her genes that denied her the chance

To live to bury me

They say that no parent

Should have to bury their child

But that is to be at war with the way things are

Children bury their parents

Parents bury their children

To die is not the curse

But to die alone and unknown

So I will die every day

To the future I thought I knew

The future I didn’t know to question

When she was placed on my belly

Squirming and new

The future I thought was guaranteed

The future I thought was mine

The future I thought I was entitled to

A normal future

Life with her has never been normal

Life with her has never been average

Or expected

Or guaranteed

As is life with us all

We are not entitled to our next breath

Our next hello

Our next goodbye

Every day

Every breath

Every connection

Every fight

Every love

Every blink

Every caress

Every hug

Every sleep

Every kind word

Every cruel word

Every harsh admonition

Every gentle whisper

Every moment is a gift

Every moment contains life

Even the moments of profound grief

The moments when your heart can hold no more

These moments are sacred

Not to be ignored

Not to be escaped

To be drank

Soaked in

Saturated in

Because in the expansion of grief

The capacity to hold

love

and joy

and pleasure

and passion

are increased

Do not despise the hard moments

Do not despise death

Do not despise depth

They are a gift

Of life.