What You Don’t See

We had a big snow day in Texas for the first time in 5 or 6 years. I was so excited to take Parker out to see it. We took some photos, a few videos and went inside. It looked like we had such an amazing time! I uploaded the photos to Facebook, and of course, everyone loved them.

“She looks so happy!”

“She’s having so much fun!”

“She’s smiling so big!”

But what you didn’t see was her frustrated to figure out how to stand and take a step with one leg during her weekly Physical Therapy. What you didn’t see was three days of continued constipation, and half an hour of physically deimpacting her. Nobody wants to really hear those things, but that’s our day.

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I took Parker to meet a few family members several months ago for the first time.

“She is the happiest baby in all of your photos!”

But what you didn’t see was the screaming and terror she felt during her rectal biopsy, unsedated. What you didn’t see was the fear in her eyes as she looked at me as she was being put to sleep for her MRI. What you didn’t see was the 5 consecutive nights of no sleep, because she was having so much pain from her UTI’s that we can’t pinpoint a cause of. But yes, she’s really happy.

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I went to a birthday party with Parker.

“You are so strong!”

“I don’t know how you do it.”

“I can’t even imagine doing any of this, but you’re smiling through it!”

What you didn’t see was the severe PPD my husband fought to pull me out of. What you didn’t see was the endless nights of crying to God, screaming “Why is this happening to her?!”. What you didn’t see was the hours and hours we’ve spent in emergency rooms, urgent cares, and hospitals, desperately looking for answers. What you didn’t see was the horror I felt as I walked into the CICU to see my baby laying with her chest open after a 7 hour heart surgery at just a week old. What you didn’t see was me crawling into her bed as she screamed in pain from having her limb removed, and feeling helpless. What you didn’t see was the village it took to get me here today. What you didn’t see was me losing all my clients, letting go of my job and my passions, to spend every day fighting for an answer.

It looks good on Facebook. It looks good on paper. But being a parent to a medically disabled baby isn’t pretty. It doesn’t look good, it doesn’t feel good. It doesn’t end, and we still don’t have answers. Never forget about the parts you don’t see.