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Posts from the ‘Motherhood’ Category

The Ineffable

What is beyond language? How do I put words to it? Do I even want to try?

A post about why I stopped talking about G-d. It came on gradually really.

These questions weren't just theoretical for me. They weren't about getting my theology right or even about you or someone else following this line of thinking too. They were personal. They were about my experience of relationship. These were the questions I faced when the attempts to save my daughters life paralyzed her vocal cords and took away her voice. Our relationship was born out of a deep silence. We learned to communicate in facial expressions and gestures. We stared at each other a lot. Every parent of an infant experiences this to some extent. I did with my first-born. The difference was when I stared at my daughter's inscrutable face, I did so with little hope that I'd ever hear her speak. A life of unknowing hung over us and informed how we would begin to get to know each other in whatever ways we could.

When I began sign language classes at the Atlanta Area School for the Deaf, I learned how much the face mattered in communicating not just tone and emphasis but varied vocabulary. For instance, the hand motions for "awake" and "Surprise" are the same. The emphasis is with the widening of the eyes and opening of the mouth. Those who speak and sign are considered "bi-modal." Spoken and written words are symbols that stand in for objects and concepts. Communicating with the body requires you to inhabit what you say. It eschews some of our detachments. What we say is no longer symbolic but corporeal. It takes muscle as well as thought. In the beginning my fingers hurt a lot. The joints would feel stiff by the end of the two hour class. When I tried to finger spell words with the letter "K," I accidentally made lewd anatomical references. When I tried to order "chicken," I ended up cursing my partner.

I began to feel helplessly misunderstood and mourned the intimate mother-daughter conversations I felt would never happen. Without a shared fluent language, I imagined I would never know the internal life of my daughter. I felt the pain of the spaces between myself and those I loved with whom my words always missed the mark. I began to wonder if like color-blindness I was seeing green when everyone else saw red, I associated the wrong meanings to words I thought I knew. I left conversations feeling more baffled than before, even when I spoke with my husband or colleagues. I wondered how stuck inside our bodies and minds, how alone we all really were.

I compared these widening gaps between me and loved ones to the black hole I felt when I tried to define G-d or Love or anything that had no obvious antecedent. And yet these shimmering concepts preoccupied that yearning space inside me. When I tried to pin anything I felt or experience down, I watched as whole words flew out of memory. I felt my feet slip underneath me where I walked. I no longer trusted gravity or felt a hard surface underneath me. We all seemed to be hovering over something bottomless. Far from creating "doubt," this reality created more of a sensation of living with faith. Losing language for something is not the same thing as losing faith. Without the ability to define, without a sense of mastery over my surroundings and thought processes, I had to face what kept me from trusting and develop that ability to trust more.

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The News I Did Not Want to Bear

September 14, 2013 7:43pm
No one wants to be the bearer of bad news and it is bad news I must carry. My silence is not “no news is good news” as I promised before. That promise only reveals how I had mistaken hope for a sense of control and a belief that I could know all the possible outcomes. I should have known better after the NICU, but oh, how easily we fall back into old patterns… No amount of updates could convey the roller coaster we have been on this week and honestly, it didn’t feel right to put others through it. I did not update this site because I did not want to bear this news, and yet it is not unbearable. We will forge ahead although with more pain to Margaret Grace.

MG did not breathe easy with the cap over her trach. She made it almost 24 hours, but she struggled a bit. Maybe not to you, but to those who know her or know all about airways, she did. She put on such a brave face. She knew she needed to pass. Even today she will tell you she didn’t mind the cap. But she was stridorous asleep; she pulled a bit in her ribcage, and she often caught a huge breathe to catch up when she was active. She was eeking by. Some people may have let her go on, but our ENT believes breathing like that would limit her activity over time or enlarge her heart. Those are not side effects we want.

When they took the cap off the trach and said she could go home, she was ecstatic. She got out of bed and walked around the complex airway unit to hug every RN, RT, PCA, social worker and said “goodbye, I am going home” Then blew kisses. She didn’t know how soon she will need to return and for her least favorite procedure. Her spirit is so resilient that it is infectious.

She will need another reconstructive surgery (LTP) with a graft of her rib cartilage. Yes, this means harvesting more which Margaret Grace will tell you is the most painful part. She still feels sore at the site of her last wound when she coughs.

This graft will go in the front of her neck where her trach is. Since she was trached young, the cartilage in her trachea did not develop but the area remained floppy and relied on the artificial tube to hold it up. This is a side effect of the trach not the original problem. She now needs a surgery to take the trach out. Because they take the tube out to repair this area, she will be intubated and sedated for several days in the hospital. This was the surgery we were trying to avoid all along.

In addition to this graft, they will also laser off scar tissue above her vocal cords at the arytenoid. This could effect her speech and swallowing, but we hope that in the hands of our skilled surgeon that it does not. Ultimately, we are thankful that the first surgery is behind us and she regained her speech and swallow. Two surgeries is painful and time-consuming and not our preference, but we believe the first surgery could not have been done with the precision it was if we had tried to address all of her trouble spots at once. We had hoped that the collapse at her trach site and the scarring at the arytenoid were not going to hold her back, but they do and so we must address them.

Honestly, we thought there might be more options than to take another rib cartilage, so we are a bit surprised. We also had let ourselves put hope on a timeline and therefore are anxious to get the trach out and resume a normal life. This means we are making the surgery the first priority and trying to schedule it as soon as the surgeon can find a time. We hope you will support us in this decision and are grateful for all your prayers and help over the last 3.5 years. We are particularly grateful for Sally and Scott, who have given us a warm home and family in Cincinnati.

For now, we are glad to have a normal week as a family in Atlanta.
We do not need anything special but prayers and patience if we cannot talk about it.

Go Slowly

“Truth, like love and sleep, resents approaches that are too intense.” W. H. Auden.

I ran across this quotation in the seminal work on Traumatic Stress by Bessel van der Kolk. I have been blessed with an assignment/grant by the Louisville Institute to research this topic and its effects on people, pastors, children, etc.

Coping with the last three years has included our intellectual efforts to make meaning out of the ups and downs, the outcomes, good and bad, but also to watch how our conclusions often contradict the meanings of others or at least fall short of including all possibilities. Sometimes, humans don’t even realize how the words of comfort we offer each other if applied in another situation are painful and exclusionary. This phenomenon almost knocked me off my feet the morning we left for Ohio. We were saying goodbye to our night nurse who could tell I was quite nervous. She has been a pillar of strength and insight since we first brought Margaret home. Her own life has enhanced her natural wisdom and calm as she is now 9 years into morning the loss of her two daughters (then 7 and 17) in a car accident).

As we were parting April 2, she said “don’t worry, you can tell by Margaret’s spirit that she is meant to be here.” It was the most generous thing she could say and unusually theodicy-like for this survivor of grief but still I welled up with tears from the cruelty of such a belief as I looked at the photo of her daughters that had been cast onto a gold heart necklace she never took off. She wasn’t worrying about what that statement meant in all cases, especially not if she’d said it to her former self, she was just offering me comfort at that particular time.

Theodicy (the simplistic definition of this is why bad things happen to good people) is hard to hear when it comes out of the mouth of someone who uses it to justify their own life experience or lack thereof. But I’ve seen its other service when it comes from someone who means it only for the good of others at the exclusion of themselves. Sometimes what we say is as much a recognition that we can’t know the whole truth as it is a desperate attempt to grasp Truth intensely. Almost everything I hear myself saying in times of tragedy or even just in sermons, (I am as skeptical of my own words as I am of others’), I find falls short at some point, excludes some aspect of this good earth and wonderous universe. And so whether I accept or resent each attempt at truth-telling has more to do with the humility or desperate intensity in which it is delivered. The meaning of what we say can’t be found in the dictionary but only in our bodies and the cells that store memory. In the resonances those words make in our bones, our emotions and our imaginations. Communicating is not conveying literal meaning, it is offering an interpersonal meaning — one that has been lived and may be shared with the consent of those listening.

So I am struck by this idea that Truth resents the intense approach. Certainly in cases of trauma, we must unearth it slowly and particularly, warding off our tendency to globalize our experiences.

For our part during our re-entry ( we returned to Georgia this weekend) we are working most diligently on love and sleep. As someone how has been surviving on 2-4 hours of sleep a night for the last 3 weeks, I can say that yes, sleep is also a state that must be wooed. For weeks, I’ve survived on adrenaline. I could feel it coursing through my veins so that even if I wanted to sleep I could not, feeling as if a live spark was traveling throughout my nervous system. Now that the threat of Margaret stopping breathing is not on me alone, I can lower my fight or flight reaction, but body chemistry has its own rationale and I have had to watch it let down its guard over several days of being home. It’s so good to be with David, the nurses, friends and a church who can affirm that rest is in fact the most important task. We had an inspiring start as we returned home to a beautiful garden prepared by David’s mom the week she stayed here with James and a well-rested, joyful James from his time with her in Decatur and my parents and grandmother in Nashville. As tired as I was, I actually had a health boost due to the incredibly tasty vegan meals prepared by the Tiekes in Cincinnati. Any mother/housewife would trade a few hours (but not all) for being given tasty meals and a clean house for a few weeks that she didn’t have to do herself. Thank you, thank you to our incredible circle of support.

As for love, we are also taking our care-giving gently with Margaret as we try and wean her off the tube. She is her resilient and at times exuberant self. We tried going back to school but found she was too tired and also intimidated by the kids’ reactions to the feeding tube in her nose and their inability to hear her say “stop. go away.” when they followed too closely or came up from behind to touch her face. So for now, we are working on feeding by mouth with great success. She took all her calories by mouth (a record recovery rate for her) and is mostly struggling with water and thin liquids. She still gags more often than not, but she has said she wants to get the tube out. It seems the day at school and the reactions of others offered something in terms of motivation.

She complains about pain in her ribs still but has also refused the Tylenol and said she can handle it. This kid is very astute as to how she feels but also to the lengths she must go to be fully recovered.

It has been interesting to see her mind mature especially as it relates to the passage of time and the acquiring of skills. She has set a goal of getting her NG tube out next week so she can return to school and of getting her trach out by James’s birthday (July 7) because it is a day she can look forward to. The trach will likely come out later than that, perhaps in August or September. Cincinnati called back yesterday and scheduled a follow up scope for Wednesday, June 5th! It sounds like we will have 2 or more scopes before a sleep study and capping trial then decannulation (taking out trach). Margaret also talks about turning 5 like her brother so she can go to kindergarten at Oakhurst and so she too can read Harry Potter at night. James is excited by this because he says when he is 7 he will be able to read the series to her, the way I do for him.

It is nice to hear them planning far into the future and for us to think about living more than a few months ahead at a time. And yet, as the reappearance of that darn NG tube reminds us, reaching our long-term goals is a process, the intensity of which must be meted with truth, love and sleep!

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