Today, I experienced one of those full circle moments in life that takes your breath away. For the past two days, I attended an eating disorder conference and saw many, many friends some of whom I haven’t seen since Marjorie was born. I received numerous hugs, arm squeezes and sympathetic head nods. I loved and appreciated every single one.
My Carolina House family was, of course, well represented at the iaedp conference. My former therapist, nutritionist and a few others who have found their way into private practice. I love seeing and catching up with those special people who played such a huge role in my recovery. They were with me on those days that I just rocked and rocked on the front porch writing baby names in my journal. I wanted a family, but I wanted recovery first.
My main motivation to recover was to start a family and these two women beside me have been next to me since the beginning, walking with me on this beautiful journey. When Manning was just a few months old, I traveled back to the Carolina House to show off my precious baby boy, my proudest recovery gift.
Today, Marjorie got to meet a few of the people who played an instrumental role in her mother’s recovery, along with many other eating disorder professionals who help so many. The eating disorder professional community has not only welcomed me, but supported, prayed and cried with me during the last 16-months. My heart was so full seeing everyone meet Marjorie today, especially Christy.
While sitting down, I received an email from Christy and without thinking I dialed her number. I needed someone who knew me – really knew me and could sit with me in what was the lowest point of my life, someone who had already sat with me through a dark time.
She answered the phone knowing it was me and within minutes, I was letting out a bellowing cry. I physically hurt and was bent over with my head between my knees, one hand grasping the phone and the other squeezing my stomach in a feeble attempt to rip out the pain that was inside.
My cries turned to anger as I screamed, “Why isn’t it me? Why isn’t it me in that bed? I want to die, Christy, I want to die.” There was no filter, my mind and heart spilled out. I hurt more than I ever knew was humanly possible. In the moment, I thought I was going to ache forever.
Christy sat quietly on the other end, giving me the space and support to say everything I needed. In between my moans, I could hear her sniffling.
When I was deep in my disorder, I would experience tidal waves of painful cries. I felt like they would never end. I am living proof that even the most painful of emotions end. They might not go totally away, but they will end if you honor them. Because I let it out that day, because I followed my gut, I was able to hang up, take a deep breath, wash my face and go back to my daughter’s bedside.
Regardless of how painful that day was, it was such an important day and one I refer to often when speaking. In the darkness of these horrible life moments, we have a choice – we can give ourselves the permission and grace to feel and let it out or we can ‘survive’ and continue hanging on by a thread. Recovery is THE GREATEST gift I have ever given myself and one that proves itself to be on a daily basis.
Never be afraid to let it all out – the good, the bad, the big ugly cry and weeping sorrow. Find a person and use them. I am blessed to have cultivated a big support circle. And after five years, I am so thankful to still have Christy in my rolodex.
Tuesday, June 2 – 9:00pm
This afternoon was pretty uneventful for both Marjorie and me. The more time I spent with Marjorie the better I felt. I was still struggling with it all this morning. My body was still shaking and my mind was so foggy. I thought a night’s sleep would help me be more alert and responsive. I was wrong.
It was next to impossible to get my body out of bed. I felt as though I had the weight of the world pinning me down. As much as I wanted to get up, I just couldn’t. Then Jessica texted me saying the doctors were making rounds.
I got up and staggered to the bathroom. Brushed my teeth and hair and went to put on clothes, which are extremely limited at this point. I was forced to put on a Nike jacket my mom gave me. It’s a great jacket. One problem: Jessica was wearing a matching one downstairs.
Text from Jessica: Our room is next for rounds. Hurry.
Shit. Matching Bobbsey Twins it is. I raced down the hall and into the elevators. I hit the third floor and felt as though my legs were going to give out. Why did I still feel so weak? I slept last night, well sort of.
Marjorie’s room was surrounded by doctors, residents and nurses when I got there. I walked in and saw Jessica in the matching jacket. The doctor stopped and smirked at the set of Nike twins standing in front of him.
The resident began to rattle off Marjorie’s case as if she was reading a seafood gumbo recipe card. I once again felt as though I was floating in a dream. My eyes went between the resident talking and my sweet baby girl lying in her bed connected to every tube this hospital has to offer.
I held Marjorie’s hand while I let my sister handle the medical entourage in our room. It was still too much. A voice in my head kept saying, “Get it together. You need to listen. You need to know what’s going on.” But my body and mind could not catch up.
When rounds were complete, Jessica went upstairs to shower and change out of our matching jackets. I was left alone in her room for the first time.
I stood over my precious baby girl, talking to her and eventually sobbing to her telling her how sorry I was. She is heavily sedated, but I know she hears me. I sang our song and felt her little hand squeeze my finger so tight I never wanted to let go, but I did because I felt as though my knees were going to give out.
Jessica returned so I stepped out to go to the bathroom. On my way back to the room, I saw a sign that said ‘Patio Access’. I decided to explore and also that it would hurt to get some fresh air, considering that I had not been outside the hospital in a week. Literally.
I found a bench and sat down. My hope was that maybe some time outside would do my mind and body good. That if I took a little ‘breather’ my mind would return and I would be able to process and have conversations with doctors again.
My phone buzzed signaling new emails. I opened my phone and glanced at the emails. There was one from my former Carolina House therapist. I typically reply via email, but for some reason my hand went to the phone number in her signature. I didn’t know why at the time, but I know now.
Before recovery, I kept everything bottled up inside. I never listened to my body or intuition, whether it be hunger cues or emotional cues. Today, I follow my ‘gut’. Often times I have no idea why I do something until much later.
The phone rang twice before Christy picked up with a soft, “Hi.”
“Hey,” I muttered back.
I filled her in on the medical side of things, Marjorie’s treatment plan and prognosis. Then somewhere along the way, my voice cracked and the flood gates opened. I’ve cried a lot this week. I’ve broken down a lot this week. I’ve almost passed out multiple times this week, but I haven’t cracked. I cracked and let it all out. The sadness, the anger, the confusion, the desperation to trade places with my baby girl. Emotions poured out.
I needed a safe place and a safe person. I am lucky to have two ‘safe’ people in my life. They are not in my inner-circle, but know me better than most. I did not know when I clicked the call button, but I knew when I hung up why I called. My intuition and spirit knew that was what I needed. I did not need someone to say it was going to all be okay. I needed someone to let me pour it out, to cry with me and to tell me THAT was okay.
All to often we want to fix: fix problems, fix emotions, fix cancer. I seem to find myself in these situations that there isn’t a ‘fix,’ but rather a ‘sit with it and in it’ kind of scenario. Sigh. But I’ve been through it enough to know if I don’t let the emotions out, if I don’t take care of myself, then I am no help to Marjorie and the people I love most.
I walked back into Marjorie’s room weak and tired, but calm. My emotions were calming and settling down, kind of like Marjorie’s heart rate. After a yummy lunch (thank you, Derek, for Publix Sub Tuesday), I found my mind clear and almost alert.
My ‘island besties’ came to visit, as well as a sweet friend from Jacksonville. They all loaded me down with snacks and special gifts. I was actually able to talk and enjoy the visit…even laugh.
Then Dr. Gauger came in just to check on Marjorie. She was our first Oncology doctor who gave us our diagnosis and game plan. She isn’t even on service this week, but wanted to check on Marjorie. Did I mention how extraordinary she is? She has stolen our hearts like Marjorie has stolen hers.
I suddenly found myself having a lucid conversation with Dr. Gauger and our PICU doctor. I was answering questions and responding in complete, coherent sentences. Sounds silly, but I honestly haven’t been able to put words together.
Today was, dare I say it, a good day…well in comparison to the past week. Marjorie is stable. Marjorie is COMFORTABLE and that is all that matters. We will stay on the vent until her liver goes down. When will her liver go down? When will the chemo start working? Well, those are the million dollar questions.
Tonight Jessica and I are having a slumber party upstairs in our old room, which we have now dubbed the ‘Hospitality Suite’. We both need a good night’s sleep.
I can’t thank the Wolfson staff enough for their love and kindness. I rest easy knowing my girl is just downstairs resting peacefully.
Tonight’s prayers are said to St. Erasmus (Patron Saint of Liver Disease) and St. Peregrine (Patron Saint of Cancer). It is time for some LIVER SHRINKAGE!!!!