Connotations, Anxiety, and Conversations

My pastor and dear friend passed after fighting cancer almost two years ago. I only mention Wayne Hunter now, because I am going to start taking a page out of his book in how I structure my posts. He would often give the short & sweet version of his health updates at the top of his blog posts. This way those that didn't want all the thoughts and musings could get information first thing. Those that wanted to read all the nuances could read on.

So in H Wayne fashion here is our update on June:

Last week was full of follow-up appointments. June will be getting an iron infusion every two weeks for now. They will do labs before hand to see how her levels are holding up. If they see anything else that needs to be addressed with an infusion they will add it to her treatment. The infusions are helping with her iron levels. Labs are showing that the diet has slowed down the nutrient and protein loss, but only some.

She unfortunately is in chronic pain. She has had this for a while, so when you see her during the day it doesn't seem like she is having any trouble. The evenings are the hardest for her. We believe it's because she doesn't have much to distract her and she's exhausted. Pain is one of the common symptoms of intestinal lymphangiectasia. Our pediatrician is hoping we can get approved for a drug treatment that has shown to help patients with this disease and other intestinal inflammation disorders. We are scheduled to talk to her team in Philadelphia on Monday, August 16. We will know more after that conference call.

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The evening I started this blog I had told my husband what I was doing. I had the approval from my therapist that this would actually be helpful for me, but I wanted to share it with Jake. I spent an agonizing amount of time on the name of my site, and if I am completely honest I am still not crazy about it. Once I landed on the title I shared it with him and I got that look. The look that is worry and let's talk all mixed into one. I can't remember exactly what was said, but the gist was this: you are fighting for our daughter and educating yourself like a champ, you don't need to doubt yourself.

Jake wasn't the only one that reacted that way. In subtle ways the responses I got from my first post gave me the impression that many of my loved friends and family felt I was doubting myself or God maybe, just from reading the title of my blog. It all comes down to what others feel or think about when they look at the word "doubt". Being someone that fights anxiety and depression on a regular basis, I somehow overlooked the fact that my perspective of doubt has changed over the past year while pursuing treatment for my mental illness.

For me when I say I am a "doubting mommy" I am not saying I am doubting myself. Doubt for me is just uncertainty. Now uncertainty can come in many forms, but doubt has always motivated me to question situations and with that questioning has come major growth. I don't believe that we should shame ourselves when we doubt things like a doctor's opinion or the interpretation of prayer and scripture. If anything I believe doubt can be inspired by the spirit to help us change our perspective and truly listen to what God is trying to tell us.

This past week did not go the way I had expected. June's case was reviewed Tuesday and I found out the hard way that my expectations were unrealistic. Surely we'd be hearing from her care team by the end of the week right? That didn't happen. Surely her follow-ups would bring answers and helpful suggestions for caring for her? That didn't happen either. With my unmet expectations, my anxiety built to a crashing point. With no answers for treating her pain better, more appointments to attend, more work to be missed, and no conversation with Philadelphia scheduled I could feel the pressure in my chest building.

My panic attacks always start with that pressure. It then leads to tingling in my face and hands, shallow breathing, and loss of control in my arms and hands. This time I knew what to look for and had breathing and grounding exercises to de-escalate the situation. In that time of breathing I was able to tap into that source of peace and calm. After hearing today's sermon (you can listen here) I realize my exercises are really my way of listening to God. I was able to finally recognize my anxiety was provoked by those unrealistic expectations. I was able to recognize that my doubts of doctors and of my conversations with God were not anything to be ashamed of. Without them I would have never found myself conversing with God and tapping into that peace.

My conversations with each person I come into contact recently

have been filled with honesty and vulnerability. I asked the Referral Representative in Philadelphia to share what the realistic expectations are for a parent in our situation, instead of getting angry with them and demanding action. I shared with my friend and pastor my questions about asking God for healing and everything that comes with treating God like a glorified vending machine. I even apologized to my family when I had to leave and take the time to feel all of my emotions and fear after realizing my June is associating me with pain and hospitals.

Life is so messy right now, but I do see God around us in so many ways. I see Him in my friends--in the way they are pursuing healing for themselves separately and together as a family. I see Him in my family as we find ways to smile and laugh after the hardest days. I see Him in my coworkers--in the heartfelt, soul-deep hugs, in the laughter and shared frustrations, in the strategy of a well launched cd and squirt of water, and all the other space in between. Most importantly I see God in my doubt, my anxiety, and my thirst for community. It's what keeps me going right now and that's ok.