Resting in the wave of a storm

Trough by Judy Brown

There is a trough in waves,
 a low spot
 where horizon disappears
 and only sky 
and water 
are our company. 
And there we lose our way 
unless 
we rest, knowing the wave will bring us
 to its crest again.
 There we may drown 
if we let fear 
hold us in its grip and shake us 
side to side, 
and leave us flailing, torn, disoriented.
 But if we rest there
 in the trough,
 in silence, 
being in the low part of the wave, 
keeping our energy and 
noticing the shape of things,
 the flow, 
then time alone 
will bring us to another 
place
 where we can see
 horizon, see land again,
 regain our sense
 of where
 we are,
 and where we need to swim.

I am in the trough of a wave right now and trying my best to rest in it…to resist the urge to cling and flail in fear. Eliza had her swallow study today, and we learned she is silently aspirating in her feeds. I have been avoiding this study for weeks, fearing that they would find some minor trace aspirations and pressure us to thicken feeds…something that would likely lead to even more struggles with fatigue and calorie intake. Bottom line: the tube we fought so hard to lose would potentially reappear in our daily lives just as we had finally made some headway with consistent volumes and even weight gain. The choking incidents that used to happen were now so rare, and I was feeling optimistic that we had turned that magical corner. I didn’t want to go backwards again, and I was prepared to fight for the chance to prove we were there and could only get better. I was not, however, prepared to hear words like “significant,” “dangerous” and “alarming.”

The swallow study therapists explained that even (in fact, especially) in the moments when Eliza was seemingly swallowing without any signs of distress or dysfunction, the radiology images showed whole mouthfuls of milk making their way to her lungs instead of her stomach. And to make matters worse, the fact that she did not respond suggests that it has likely been happening for a long time and that therefore her body accepts the wrong turn as normal. No protective reflexes kick in and prompt her to cough and clear it, so the milk settles into her lungs. That’s not good, they explained. I knew that. What I don’t know…what even they couldn’t tell me…is what to do next. We ran out of time in our window of radiation allowances before being able to determine definitively whether an intervention like thickening would even work, so it’s possible that introducing a thickening agent to her milk could not only slow down her calorie intake but add a new invader to her lungs if she swallows it too. Radiation restrictions also prohibit us from being able to test again for another 6 to 8 weeks, so any decision we make will be made in relative blindness to what’s actually happening…especially since she shows absolutely no indications of the aspiration.

I was given a discharge summary that states that Eliza “is not safe to consume thin liquid via any method given multiple episodes of silent aspiration” and told to keep doing what we’re doing (ie have her consume thin liquid via a bottle) until I hear from the doctor about how to proceed. I left the hospital and walked to my car in the pouring rain, covering Eliza’s carseat as best I could with a blanket. It was all too much…heading home to continue our daily calorie quest knowing that every one of the mLs I had fought so hard for was potentially creating more work and decreased lung function for my little girl. How could I do that? I literally laughed out loud at the absurdity of the whole thing as I walked through the sheets of rain and then broke down into a sobbing mess in the car. I’ve had better days.

I know I’ll hear from the doctors tomorrow and will be faced with more information, opinions, and decisions, but right now I am just trying to surrender to this new wave…to float and trust and even embrace the rhythm and journey. Because it is the one we’re on. And fighting against it won’t change it…it will only drown me in exhaustion and frustration. So for now, I’ll put down my computer, pick up my baby, and begin another feed with renewed prayer and gratitude that He who created the oceans and calmed the waves is beside me…holding us both in His perfect grace.

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6 thoughts on “Resting in the wave of a storm

  1. Julie, I’m so sorry to hear this. I have to think the heavens pouring out last night was God Immanuel, with us, weeping with you. Praying for your continued peace and for good wisdom in next steps for Eliza.

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  2. Julie, I am following you and Eliza’s every loving moment with each other. Your faith will continue to get you through these days; and you have the strength you need to endure. This blog has shown me what a passionate soul you are. You continue to teach all of us the true meaning of life. Love, di

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  3. So very sorry to hear about this new problem, just keep on going, one day at a time, one foot in front of the other. She has the best parents possible to help her get through this. Thinking of you with love and sending all good thoughts and prayers for Eliza and all of you to weather this storm.

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  4. If Eliza is anything like you or Derrick, she is going to push through all obstacles and surprise everyone. We miss you guys and are sending big hugs! Hope to see you soon.

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