Posts tagged spinal muscular atrophy
Letting Weakness Shine

I never wanted to be strong.

But from the age of 16, when my spine was fused together with titanium, and my typical teenage problems disappeared into the bleeping of ICU monitors, I was told to be strong. I had to get out of bed the next day and learn the shape of my new spine.

Physically, my spine twisted for no apparent reason. There was no underlying condition. I was just a dancer and a dreamer, struck by this lightning.

Thankfully, scoliosis didn’t take away my dreams, but when my daughter’s terminal diagnosis 12 years later brought me right back to the same ICU, face to face with the same surgeon in the same hospital, I felt it was too much to bear. This doctor fixed me 13 years ago, but he could not fix my child. This was just a formality.

I longed to protect her. She was too weak for any surgery. Her bones simply broke from lack of usage. She lived three bright, beautiful years and then she was gone.

Stay strong, mama.

I rejected that phrase like I rejected her diagnosis of Spinal Muscular Atrophy.

No one could tell me my daughter, my sweet, gushy, 4 month old, longed for daughter was dying from a disease that was literally eating her strength. Run the tests again, I asked, because this is impossible. I believed if my strength was big enough, the outcome would change. And then I went to bed and vomited. I was sick for days. Heartsick and broken.

Stay strong, mama.

I rejected that phrase when at 13 months, my daughter was intubated and we were told to leave the room. I went into complete, animal shock, dizzy from anxiety and trauma. I begged them to let me stay in the room. I’ve seen a lot, I told them, I’m not afraid, please, please, let me be there.

And like officers of the law, they gently escorted me from the room and told me I might faint. They told us to wait in the empty ICU family room with bone dry Tetley teabags and saltines. Food for the weak. Food for the sick at heart.

Stay strong, mama.

I rejected that phrase when I went for a massage, for some self care, and received a call from my daughter’s home nurse and from my husband. Something was wrong with Florence, would I please come home?

I screamed and wailed, willing the traffic to move faster, wishing for a way to get home faster. When I got home, she was so upset, in so much pain. I threw my stuff down: what happened? What the hell happened?!

I was just changing her diaper, the nurse replied calmly, and she has not stopped crying. Crying for my daughter required a lot of strength and often put her into respiratory distress.

I was 20 weeks pregnant, sick to my stomach, when my husband and I went to the ER with her. They asked us what happened and eyed us suspiciously when we said there was no fall or accident, but she was in pain. Something was wrong. I filled out a form. They were assuming we did this to her. I didn’t care what they thought, but I needed to help her. Hours later, they confirmed both her femurs were fractured. I thought I couldn’t lose any more of my mind, but when they said that her disease had simply caused her bones to become brittle and thin, I lost the part of me that I still haven’t found.

What more could we handle? Why this complication? Wasn’t a fatal diagnosis enough? Why did she now have to suffer with pain and osteopenia?

I wanted to rip the hair right from my scalp, when prayers for strength came pouring in. What I didn’t realize then, but perhaps realize now, is that those prayers were meant to call forth the God of strength that resides in me. Just as my daughter’s bones needed to be infused with medication to help prevent fractures, so too did my bones need to be fortified with an otherworldly strength.

I am not very strong, and I’m happy this way. My strength was gone long ago. It was a facade that caved in over time. Motherhood demands that we stay strong, but it’s simply unkind to ask parents to do the impossible.

The kind of strength I possess now is the strength that I inherited from my daughter. I believe my little girl was tied to heaven her whole life, linked by a gossamer cord, like a bean to a sprout, a baby to an umbilical cord. 

I have learned to milk the strength from that cord, a cord that appears ethereally thin and threadbare, but it is substantial.

It’s the kind of strength I hope to pass onto my son. 

When my son is afraid of something, I call forth his middle name, Brave, and ask him what it means.

“Don’t ‘fraid,” he replies with his two-year-old tongue.

“That’s right,” I reply, “don’t be afraid, to be weak, to be soft, to be tender.”

Don’t be afraid to be afraid, I whisper.

In my darkest moments, when I was at my lowest, I learned to let the weakness in. I delight in my weakness, if you will, and I let my son see it all.

Mama misses your sissy. Mama is sick. Mama has an owie. Mama is sad.

My son sees me in my weakness, and yet he sees me rise each morning, filled with strength. He sees me laugh and he sees me cry.

I am teaching him that it is okay to be weak, because when we are weak, we are strong. When we are real, we are strong. When we are truthful, we are strong. When we are soft, broken and vulnerable, we are fully alive.

Journalist: Michaela Evanow  (@micha ela_evanow)

Photographer:   Jozi Grant Photography

Choose Joy

Tomorrow we will have our first Instagram Takeover and we couldn't be happier with our first feature: Grace of @bowenandnella (Instagram) and Prayers for Nella (Facebook).  This family is sure to steal your hearts.  I first came across Nella in the random instagram feed and the twinkle in her eye caught my own.  I spent the rest of the day reading her story and basically crying my eyes out, and to be completely honest, I probably cried all of the next day as well.

Nella has Spinal Muscular Atrophy, or SMA.  In short, SMA is like ALS (Amyotrophic Lateral Sclerosis), but in infants.  Nella has Type I, which is the worst of its kind.  Infants with Type I SMA typically do not live past their first year of life.  Yet here she is, beating the odds as she just celebrated her third trip around the sun.  

I can't imagine living with the reality of your child having an absolute fatal diagnosis.  Of having  no options or treatment to save your child's life.  What inspires me most about Grace is how she has approached her situation with, well, grace.  Their motto, "Choose Joy" is one that I have adopted into my own life.  When we have no choices, we can still Choose Joy.  This is possibly best seen in the way Nella dons an adorable outfit every single day, not to mention lovely painted nails.  She may be hanging around the house all day, but that doesn't mean she can't look fantastic doing it!  

August is SMA Awareness Month, and we are so happy to help spread awareness about this terrible disease.  Although it is the number one genetic killer of infants and young children, no one really knows about it.  We are so grateful for Grace as she shares a little piece of Nella with the rest of us. Look out for Grace's takeover tomorrow on our Instagram page.  She will be posting throughout the day and will be answering any questions you may have about living with SMA.

Here is a little sneak peek at Grace and her beautiful family... just a warning, you should have some tissues handy.

Written by, Kelly Estrella