No longer naive.

Life, unexpected.

Surely there is light at the end of this torturous tunnel. For the hours and days and years of shock and heartache and fear and immeasurable anger – surely there is peace, too.

I knew in my gut that something was not right when neurology called me and asked to move the discussion of Poppy’s sleep study up a week. My gut has not failed me, ever. I was preparing to find out that she had either obstructive or central sleep apnea – and talk about the course of action to help her breathe better through the night. I knew either way – that something had to be done.

I did not, however, prepare myself for what was true. The words that came out of her neurologists mouth… And kept coming, and kept coming, and…

In a 7 hour stretch of “sleep” Poppy woke over 90 times. 55 of which were because she stopped breathing. The other percentage because she wasn’t breathing well enough to get proper oxygen to her brain. Some episodes because her airway was obstructed – and others because her brain forgot to send the message. Both causing her blood oxygen level to desaturate into dangerous lows.

Central and obstructive. AND there was more. She has a periodic pattern of apnea that indicates a malfunction or malformation of the breathing center of the brain (back of the head toward neck).

“Troubling,” said her neurosurgeon.

So she will now be on oxygen while she sleeps. We will have an oxygen tank in the bedroom and she will get a “whiff” of oxygen throughout the night to protect her brain when she stops breathing and her levels drop. A nasal cannula and tube, attached, all night and nap long.

There is something deeply harming about the news that my sweet girl stopped breathing 90+ times in the night. Something altogether crippling about the truth that I have been carrying in my pocket, wrapped up in the comments and advice of well-meaning folk who brushed off my worry and (in more selfish times) complaint that neither her nor I had slept a solid hour since her birth. I hid it away like it was something to be ashamed of.

“My baby wakes up all the time, too.”
“I haven’t slept either.”
“Babies just stir a lot.”
“She seems fine to me.”

And many comments like these coming from the mouths of medical professionals after I expressed my concern for the proper development of her brain.

I am shaking with fear and anger and resentment and most accurately – exhaustion.

I thrive in isolation, being alone. But feeling alone is different. Feeling alone provides no sustenance from which to grow – and it wears holes in the parts of a person that keeps them upright.

I am her advocate. Her specialist. Her expert. Her mother, yes. And with all of this glorious knowledge and awareness and love and admiration comes the reality that I could also, by simply not being perfect, cause her harm.

Where do I push? When do I listen? How do I make all of the right decisions at just the right time so that she can grow and stay healthy and happy and aware and astute?

So here we are on a finer line, upon the fine line of life. Walking a buttered tightrope just above a thin beam. Constantly aware of the power it takes to not look down. Down is not an option.

“Just enough oxygen to protect her brain,” she says. “But not enough that her body becomes too dependent and stops breathing for itself.”

I am so sad for my baby. I am so sorry that she never feels rested or refreshed or dreams effortlessly of laughter and sunshine. I am so very tired of this fear dictating our lives – and still having to function at “face value” out in the naive world.

And it is naive. The experience of life before every second is stolen away because of love. I remember it. The adrenaline – the adventure – those risks that flipped my stomach and made my neck sweat and throat shake.

It’s different when it doesn’t subside. Almost maddening.

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4 thoughts on “No longer naive.

  1. Your courage is so admirable, the courage of your little angel is astounding and your sons courage is phenomenal. Thank you for giving us a glimpse into your courageous life. It gives us all the strength to get through our own “stuff”
    Much love to you three xoxoxo

  2. Nicole, I love you. Like a lot. I always have, even though it seems like we didn’t really get to talk that much when we were neighbors. I need you to know that I am not telling you in the end this to make you feel better or make it go away.

    I have the same problem. I don’t know how many times I stop breathing at night, but I am prone to desaturate very quickly. My problem is that even though I know it helps me, I somehow always grab the thing out once I fall asleep. I think we are going to have to start using some tape or something. I don’t mind it when I’m awake, but when I’m asleep, out it comes.

    Also, make sure they add a little water to it, so that her nose does not dry out. It also provides a comforting waterfall like sound. At least for me, it’s comforting. :-).You will notice a difference in the positive direction in her energy level with this support provided.

  3. 3 years next week and I still sleep with Gabriel’s monitor on bust next to my head, almost attached. I have nightmares while I am asleep and even awake about the fears of my son sleeping, playing, learning, walking, society, acceptance, and the bullying. Apert Syndrome builds fear in a parent like few other things. There are so many fears associated with the syndrome that you spend just about every moment of your life in fear. It colors black most everything in your mind and never lets up. Few will understand what you are feeling…even those of us that are experiencing the dark tunnel that is Apert can fully understand the fear much less explain it. My heart is broken every day and rebuilt every day with his beautiful smile. Even when we smile at each other my heart breaks inside my chest because my mind is processing all the ways the world will treat him and what is coming to take that perfect smile away. I think the hardest part is not being able to take the pain for him, take the fear, the surgeries, the risks, the people staring, the questions, not being able to shield him from all the things he doesn’t deserve. Being powerless in the face of the child you love more than anything in all of the world causes as much frustration as the fear. It is hard to explain to people how a heart can be so full of love and pain at the same time. Apert parents know this all to well. Stay strong.

    Ty

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