Spinal Decompression

Today is a date which will live in infamy, at least for our family.

This day, 2 years ago, I was exactly 34 weeks pregnant and rather ill-prepared to pass my only child Earth-side off to a team of doctors who would lay her on her belly, and shave off her baby curls, placing them haphazardly in a bag with a tag that read her name, date of birth, age, and her patient OR code. The team would then monitor her for a while, before opening her neck to reveal her spinal cord and skull. They would begin the decompression process to open up her bones, a couple of millimeters. It would take over 5 hours.

Millimeters meant:

Those millimeters meant that she would stop screaming in the middle of the night when she stopped breathing. In fact, she would stop, stop breathing. Addie’s nighttime vomiting from sleep disruption and nerve damage would stop. My baby would continue to walk and her arms and legs would function as they always had.

She would stop blacking out, her breathing paused for seconds that seemed like hours.

I can still hear my own voice screaming, though I was disembodied from my actual person. Holding a lifeless child for 10 seconds at a time felt like an eternity. And I recall the time Dave didn’t even realize it was happening and she was limp on his shoulder as I screamed in her face to wake up.

On this day,

I was dying inside, while also growing her baby sister’s new life, unsure of how we got here. How I couldn’t protect my baby from her own body.

This is where we started… kind of. The title makes me cringe now, as though I am trying to tell my story. As though this is only hard on me. But, it still resonates so true and bold. On Being a Special Needs Parent has taught me a lot.

I love this post because it shows where we were, but also what I needed to learn. I have learned to embrace DISABILITY. The word doesn’t mean less than or that she needs special treatment, but it does mean there are differences we need to address, and that Addie is ENTITLED to equality in accessibility BY LAW. I have learned that no “normal testing” will ever be in and out, easy, or typical. And there is nothing wrong with that.

I have learned that Addie will teach me things I never would have known without her, but I still need to be the parent, the guardian, the guide, and the mama bird and bear. I must give her wings to fly, building them- even if she’s falling in flight. Each day, I have to be fiercely advocating- or prepared to- while stepping back to take her lead. Her voice must come first in this narrative. There is no option in that. I must never give up on her.

Decompression wasn’t unexpected

But I was in denial… it seems for a long time. I wrote a post about the signs she needed spinal decompression (although I titled it rather poorly, so it can be hard to find). If you want to check it out, here is how we found out Addie needed spinal decompression.

And so it was

Two years ago, our summer wasn’t spent basking in the sun, not a care in the world… of course, there was some of that. August brought about a change, however, that we will never forget. The admission to the hospital after an easy surgery. A rare reaction. Unexpected hours in decompression surgery. And, finally, peace.

Please note: if you click on “decompression surgery” above, at the end of that post is a photo of Addie’s spinal decompression incision as it healed that first week. It’s not gruesome looking, but it’s my warning!

Today

Addie is an amazing kid. She dances twice a week, enjoys music class, and is starting 3 days of school in her second year of preschool this September. She loves to swim and, if you look at in her hair in the water, you may just believe: She’s a mermaid. Our journey isn’t over. Disability isn’t something we can stop addressing. Adelaide’s achondroplasia is always a consideration in her overall medical care- and in the next 12 months, we are looking at another major surgery (which I’m not ready to share about, yet).

This road is sometimes bumpy and foggy, giving me a less than a quarter mile visual. Dangerous to travel at the speeds we do. But it is loving, and complete, and always walked with the most amazing tribe a girl could ask for.

Today, two years ago, is a date which will live in infamy.

Comments

Meagan says

August 12, 2016 at 4:37 pm

As a fellow mom, I can’t even imagine the heart break of watching your child go through something like that. Thank you for sharing your story and strength!

- Chelley @ A is for Adelaide says
  
  August 15, 2016 at 11:45 pm
  
  Thank you for your kind words <3
  
Tara Noland says

August 12, 2016 at 5:09 pm

She is absolutely adorable!! My heart goes out to you and your family for the struggles that you have had to overcome and the ones that you will face in the future. I wish great strength to you to carry on through your next hurdles.

- Chelley @ A is for Adelaide says
  
  August 15, 2016 at 11:46 pm
  
  Thank you so much!
  
Nancy at Whispered Inspirations says

August 12, 2016 at 9:36 pm

She is beautiful. I can only imagine how hard it must have been for you guys.

- Chelley @ A is for Adelaide says
  
  August 15, 2016 at 11:47 pm
  
  I am glad she’s so strong- I think Addie gets me through the hard days more than anyone or anything else.
  
Lisa Collins says

August 13, 2016 at 12:34 am

Wow, what a story and thank you for sharing. It’s amazing where two years can put us and what a smile to have in your life everyday.

- Chelley @ A is for Adelaide says
  
  August 15, 2016 at 11:47 pm
  
  For sure! Just 24 months… and a whole new kid!
  
Ryan Escat says

August 13, 2016 at 11:49 am

I’m really glad that you shared your story and I would like to share this to others to inspire and to give hope.

- Chelley @ A is for Adelaide says
  
  August 15, 2016 at 11:48 pm
  
  Thank you so very much.
  
ChosenDisabled says

January 30, 2020 at 1:23 pm

as you say: everything s happenes for a reason, wish a fast recovery to all sci
ChosenDisabled recently posted…ASIA Scale: Assessing Spinal Cord Injuries

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