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.