I remember one thing the author said vividly. She said, “relax into the mystery of life as it is happening.” I look at that quote every day and try to let it inform my thoughts and actions.
Ellie is now 2 years and 3 months old and the first two years of her life have been by far the most challenging period of my life. Those two years brought an onslaught of challenges that just seemed to pile one on top of the other: difficult birth, extreme challenges establishing nursing, painful nursing because of Reynaud’s syndrome, failure to thrive, unsupportive doctors, colic, severe sleep depravation, lack of support, feeling alone, food allergies, a second, scarier round of failure to thrive, elimination diets, feeding therapy, learning to go dairy-free, soy-free, egg-free, gluten-free, citrus-free, coconut-free, then learning the SCD and GAPS diets, learning about gut disbyosis and all its health ramifications, learning how to be an advocate for a sick child, caring for a child experiencing a “healing crisis,” which at times felt worse than caring for a sick child and finally – and equally challenging – is learning how to transition to parenting a healthy child and letting go of the anxiety and militancy that accompanied the sick years.
The reality is – Ellie is doing amazing. And I never expected that would come with its own challenges. Sure, we still need to keep her diet to a restricted list of foods. I am doling out supplements like some parents hand out candy. But what we’re doing is working. She is (mostly) sleeping through the night. Complaints of tummy aches, reflux and stomach cramping are rare occurrences these days. Ellie is pooping several times a day and her stools are consistently formed. She hasn’t been constipated or had diarrhea in two months.
The anxiety and militancy lasted long after Ellie started to improve. I catch myself even now – two months into this period of peace and wellness – freaking out if Ellie doesn’t want to eat a meal, if a kid tries to hand her a cookie or if I hear that old familiar wail come over the baby monitor in the middle of the night. In those moments it’s as if no progress has been made at all.
A night last week was one such occasion. We had tried two new foods (bad idea, as always) and at 11 pm Ellie broke her silent sleep with a loud wail that always spells trouble. My heart stopped and I said to Ian, “I can’t do this. I don’t want to do this again.” In these moments – in my mind – Ellie is four days old and hasn’t successfully nursed yet. She is being fed by a Supplemental Nursing System, sucking formula out of a tiny tube taped to Ian’s pinkie while I look on, breast pump attached to my breasts and tears running down my face. She hasn’t slept for more than an hour or two at a time and I am so deprived of sleep and nourishment that I am beginning to feel like I’m loosing my mind.
But these moments of raw fear are happening less and less frequently and what’s taking their place is healing on many levels, for Ellie, as well as for Ian and I. Healing takes the form of sleep. It appears when I notice we’re having more fun and having to “work” at finding the answers less and less. Healing feels like less anger and more joy. Healing requires letting go of the past – something Ellie has absolutely no trouble with. I’m trying to follow her lead.
The idea behind Broken Open is that we go through something so challenging – an illness, a divorce, unemployment – that we literally cannot avoid being changed by it. Our old ideas of ourselves and how life should be are stripped away and after the uncomfortable stripping away happens we are left with a fresh self and a fresh perspective on the world. I met a woman a couple months ago whose house burned to the ground. She described it as the best thing that ever happened to her. Because of that event she was able to understand herself in a new way. She re-evaluated what things were necessary in her life and took the opportunity to chart a new path.
Having a chronically sick child feels a little like watching your house burn down, I imagine.
The first two years of Ellie’s life broke me in many ways. I lost my faith in the traditional medical system and this in turn made me question the soundness of many institutions. At times I lost my faith in God as I questioned why such a perfect and innocent child would have to experience so much pain. At times I lost faith in my family, my husband and myself when none of us were able to help my daughter.
As Ellie started to heal over the summer I found that I was beginning my own healing journey. My faith in myself was restored. I was able to see that I had really done it - I, along with Ian, our wonderful nutritionist and naturopath - had healed Ellie. I am a changed person. I have been broken open. I believe in the wisdom of the universe and believe now that this horrific experience will ultimately lead to good as my life, Ellie’s life and future generations will be transformed by what we’ve learned about health and diet. That may sound a little out there, but the power of diet and nutrition is huge and I believe what we’ve learned will help us live life and experience radiant health.
Ellie’s healing has broken open huge expanses of life that I thought I might have been cut off from forever. I am exploring writing again with new enthusiasm. I am reaching out to women in my community and making friends for the first time in a long time. I am more comfortable in my body. I’m in tune with the messages my body sends when I eat foods and respect what it does and doesn’t feel good eating.
When Ellie was very young I was too afraid to go to a new mother’s support group because I feared the other moms would see what a poor job I was doing of caring for my colicky daughter (totally irrational thinking – I was doing an amazing job, as I can only see now). Now I run a meetup group for Radical Homemakers here in Portland. Also when Ellie was a baby, I was so paralyzed by depression that I couldn’t go to a yoga class. I remember one time sobbing to Ian – who was trying to prod me out the door to a class – that I was afraid others would see what a mess I was on the inside. Now I regularly go to yoga and do other things simply because I enjoy them, like taking walks, meeting with friends, reading novels, getting acupuncture and traveling. Because I was broken, I am now open to life in a way I haven’t been in a very long time.
I am always learning new ways to care for my family and myself and I have by no means “figured it all out.” But a shift has happened that I want to celebrate. My daughter is better. And because of this huge victory I am relaxing into the mystery of life and opening up to what will come next.