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 
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 
 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.

Carrying each other’s burdens

“Carry each other’s burdens; and in this way you fulfill the law of Christ” – Galatians 6:2

Last week marked the official beginning of Eliza’s journey in the Early Intervention program that will take her through all the therapies of these first three years. Right now, we will meet with an OT every week and a PT twice a month, but later the team will likely include a nutritionist and possibly a behaviorist. The two ladies assigned to our case came together for the first appointment and spent an hour evaluating Eliza before leaving me with a list of “assignments” that include posture exercises (to improve tone), head placement (to even out flat spot on her skull), and of course, the ever-present quest to improve feeds.

It seems impossible that it’s only been eleven weeks since Eliza was born. It feels like ages have fit into that relatively tiny span of time! Our days are measured in the number of milliliters she drinks, our weeks in doctor and therapy appointments, and our months in growth charts and developmental goals. And it’s easy to become so consumed in those breakdowns that I forget to take a breath and look around at the big picture…the life picture!

To be honest, sometimes looking at more than the next meal or the next appointment becomes too much. And it’s not just Eliza’s struggles. It’s Amelia’s tears when I drop her off at school, it’s Derrick’s relentless schedule and high stress, it’s a daily worry that I’m not doing enough or doing it right. I’m still amazed at how quickly the tears come when a friend looks me in the eye and asks me how I’m doing. Because as much as I want it to be, this isn’t all “settling down” and “falling into place” yet. I haven’t hit the magical groove that I keep waiting for.

But thank God I have a village reminding me that it’s okay to be wherever I am…a village that has been cooking meals and dropping them off at our home for over eleven weeks now. A village that offers to take care of my dogs, to pick up Amelia, to sit with Eliza. A village that came to the hospital with food and flowers and prayers and that has continued to show up so many times and in so many ways ever since. A village that listens to me and cries with me and wraps me up in so much love. At the end of the day (or week, or month, or whatever), that is what it’s all about, isn’t it? Leaning into that love and hoping that someday when I find that groove and settle down (or at least come up for air), I can pass it back. Because you can’t hold that much ache and joy and gratitude and not let it spill back out. There is more power in carrying each other’s burdens than I ever knew. It is the ultimate call…the ultimate way of sharing love. Faith, hope and love. But the greatest of these is love. So I’m leaning in and holding on.

Surrendering in faith

“Surrender to what is. Let go of what was. Have faith in what will be.” – Sonia Ricotti

I feel like I’m just now catching my breath after a weekend of worry. Eliza came down with a temperature on Friday evening. While that’s scary enough for any young infant, babies with PWS rarely get fevers, so it is typically followed closely (often in the hospital). Thankfully, she seems to be feeling better now, but she still had a temperature when Derrick checked her in at her appointment with the ENT yesterday. The doctor scoped her throat to ensure there were no obstructions before reviewing the report from her recent sleep study. Bottom line: Eliza needs a swallow study to determine whether milk is aspirating into her lungs during feeds and also needs to remain on oxygen until another sleep study is conducted at 10-months-old.

The news hit me hard…not because either intervention is dangerous or even uncomfortable, but because it feels like I’m losing hold of all the optimistic signs of Eliza’s “special” success. Most babies with PWS need sustained oxygen and feeding tubes during infancy, but Eliza went through her entire five-week stay at the hospital without oxygen and had graduated from the feeding tube before anyone expected. I treasured those little victories! And the NICU was supposed to be the hard part. Now that we’re home, we’re supposed to be getting better, stronger, more efficient. Instead, all the things that we didn’t need…didn’t even worry about…are surfacing as everyday parts of our life. And I am having such a hard time letting go! I carry the oxygen tank up and down the stairs and look down to see a baby who wears the reminder of all the things I cannot fix. It seems like proof of her diagnosis…of the differences that will draw eyes and leave observers wondering what is “wrong” with her. And I hate that. I hate that anyone will ever in her whole life think of her as anything less than perfect – because perfect does not mean typical. I want to escape from the growth charts that show her as a tiny dot below the lowest green line, from the bewildered looks from strangers when I explain that she is two months old and not a preemie, from the assessment reports that indicate her as a strong candidate for more studies, for growth hormone therapy, physical therapy, occupational therapy. I look at her, and I see a beautiful baby girl with porcelain skin and her daddy’s red eyebrows who loves to cuddle into my chest. I see Eliza!

She snoozed peacefully beside me as I wept over this post…letting all the grief and worry pour out. And then she woke up hungry and eager to be held. So with tears still streaming down by face, I picked up my perfect little girl and got the smile posted here. And I remembered. She is not miserable. She is not worried. She is living this moment…just this one! Happy to be held by her mama, get her milk, and look at me with that joyful grin. What wisdom! What a gift!

Living the questions

“I would like to beg you…to have patience with everything that is unsolved in your heart and to try to cherish the questions themselves like closed rooms and like books written in a very strange tongue.  Do not search now for the answers, which cannot be given you because you could not live them.  It is a matter of living everything.  Live the questions now.  Perhaps you will then gradually, without noticing it, one distant day live right into the answer.” – Rainer Maria Rilke, Letters to the Young Poet

 Today was the Prader-Willi Clinic at Children’s Hospital. I have had the date marked on my calendar since before we left the NICU and have been counting down to its arrival with equal parts fear and excitement. PWS is partially so intimidating to me because I am so unfamiliar with it…I had never even heard of the diagnosis until we were considering at as a potential one for Eliza. So a part of me was eager to finally be in a room with specialists who were familiar with PWS kids and to meet other families on their own journeys with the syndrome. But then there was the part of me that dreaded hearing about all the risks and potential struggles. And there was the part of me that was afraid to meet older kids with PWS…I was afraid that doing so would be like watching the movie version of a favorite book and losing the imagined characters in my mind’s eye to the theatrical cast. I didn’t want to have expectations – good or bad – around what to expect with Eliza at two, at ten, or at twenty.

After more than four exhausting hours with seven doctors and therapists, the official clinic was done. We fought the urge to retreat back to the safety and predictability of our home and headed up to the luncheon sponsored by the PWS association. I am so glad we did! The families we met were warm, honest, funny, and so friendly! I found there was a common thread in those first terrifying experiences after the diagnosis was made, scouring the Internet or resource books and finding mostly doomsday warnings. There was a bond in the sharing! And there was a hope in the eyes of each child…children sitting contentedly around a table filled with food. It was far from the image I had feared after reading about locked cabinets and morbid obesity.

I still have questions. Lots of questions. Will Eliza respond well to growth hormone? Will she be able to integrate in a classroom with her “typical” peers? Will she learn to drive? Go to a dance? Go to college? Control her eating? Will she be happy? And despite their expertise, I don’t know that the team of medical specialists I met today can ever answer them. But I don’t know that I want them to either. Because like anything, the beauty is not in the answer but in the seeking….not in the destination, but in the journey. I am trying to live the questions…to cherish them and have patience with everything that is unsolved in my heart, trusting that I will someday live right into an answer more perfectly wondrous and beautiful than I could have imagined myself.