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Future Hangs on a Sneeze

Future Hangs on a Sneeze

There’s a new level of vigilance ordering our family life. After our surgery was cancelled the day before we left for Ohio, we learned Margaret needed to be well for 6 weeks prior to this major surgery in order to withstand the 5-8 hours of anesthesia and the recovery of an area likely swollen by respiratory infections.

Our hands are cracked and bloody from all the washing and sanitizing. Vitamin C, Elderberry, and Echinacea are staples of our diets. The juicer has never gotten more use. Even the kids have gotten over their fears of drinking something green.

We’ve had lots of coughing and sneezing, but avoided extra oxygen at night. Every sneeze catches my heartbeat as I wonder — allergy or virus. With GA’s loopy weather, it looks like it’s been mostly allergies so far. But their similar symptoms have kept us on a roller coaster of Will She or Won’t She?

The date for the surgery has been set April 3 and 5th and it looks like we can keep it — so far, so good.

Yes, this is the week right after Easter when all the other ministers are at the beach (more time to pray for us). Overall, it is a better time to be in Ohio than February, so we hope for a day or two of sweater weather (as opposed to long-johns and down jackets).

I don’t have the intricate plan of helpers that I had last time. I’ve learned to simplify since it took weeks to recalibrate all the moving pieces after the cancellation. But basically, the whole family (James will miss school with a doctor’s letter) will leave town for those two weeks. David and James will return by the 13th for a wedding. And Margaret and I will stay for another week or so depending on her recovery.

I’ve made a friend with a young adult on line who just had this surgery and it’s helpful to know someone who can articulate the pain and swelling and timeline of recovery. It’s not pleasant. I hope MG finds her strong spirit again. She’s been experimenting with three-year-old stubbornness and tantrums lately. Good to see her typical developmental side coming out but she’ll need that extraordinary spirit to get her through April.

That’s My Mommy

Margaret Grace completed her first full week of school and already we’ve seen changes in her.  We are humbled by the excitement our public school system had to receive her into their 3-year-old program, offering us a space in the classroom in recognition that interaction with her peers would be the best motivator for her to catch up on speech, gross motor, and social delays she has from her complex medical history and long-term hospitalizations.

They understood while they could provide early intervention in the home until Kindergarten that preschool was the right time to tackle these delays.  As parents watching our older child struggle with the fickle friendships and experimental competitions of kindergarten, we wanted Margaret to try to use her voice and refine her speech when preschool kids were still trying to love peers as they love their parents with goodbye hugs and random acts of sharing.  We felt an urgency to intervene in Margaret Grace’s social world before she became self-conscious and perhaps stop trying to talk.

We’ve often wondered where her arms-wide-open attitude comes from as David, James and I are all more reserved and preschool has been no exception.  On Monday when I went to pick her and the nurse up, I met them in the hall as they traveled between the special education classroom and the inclusion classroom where she spends most her time.  Margaret ran to me:  “Mommy.”  As I opened the door to the inclusion classroom to retrieve her stuff quietly as the kids were resting on cots with the lights out, Margaret Grace burst into the middle of the room saying as loud as she could (a harsh whisper really):  “Hey Guys,  That’s My Mommy.”  It was the proudest moment of my motherhood journey so far.

There are many ways that Margaret and I have not gotten to claim each other as Mother and Daughter.  She was 2 months old before I was able to do more than cup my hand around her head without touching her thin skin.  She was 4 months old before I was able to hold her in the NICU.  She was 2.5 years old before she answered the question I held in my heart, “will I ever hear my child say “mommy.” Because of her medical needs, she spends more time getting her physical needs met by nurses than by me.  I am as much a manager of her case for doctors, insurances, therapies, medical and nutritional supplies and bills, as I am a mother.  Because of this, Margaret has been loved by many and I suspect it is why she opens her arms so readily to new friends.

Even as I celebrate her coming into her own, other details lurk in the back of my mind.

Today, when I picked her up the nurse reported on what they had learned at school.  She said they did the “Intruder” drill and learned to hide in a corner of the room invisible to the hallway as the room teacher locked the door when the word “Intruder” was given over the loud speaker.  Two days ago, James explained that for his elementary school the signal was when the principal announced “Code Red,” and the class of 24 piled into the bathroom.  I understand the important of preparation in terms of emergencies and for liability.  I wonder the effect that the vigilance has on our imaginations when we are waiting for the day that disembodied voice comes over the loud speaker and says “Intruder” or “Code Red.”

David and I are dealing with the gap between preparation and trauma.  Yesterday what we knew could happen but hadn’t did.  Margaret yanked her trach out.  She needed to cough and wanted her speaking valve off so she could pass mucus through her trach so she reached up and pulled it straight out of her neck.  She has more reserve than two years ago when an accidental decannulation landed us in the ER for a harrowing evening.  She stood there breathing through her nose and stoma as I panicked expecting her to go into respiratory failure right away as she had before and wondering if I could get to the emergency trach in the next room which suddenly felt miles away.  With coaching from David who stood several feet away, I took the trach from her hand and put it back in, easily…thank goodness.

Minutes later, I couldn’t remember what happened.  Did I catch the trach before it hit the ground? Was she breathing or retracting in her chest?  I replayed the scene and could see her like a china doll on a shelf, silent but calm.  I was floating above her with no body or hands to help.  As I groped for what just happened, I looked ahead to what could.  For months, we’ve been lulled into a feeling of normalcy.  Now I was seeing why she needed a trained adult AND a back-up trach right next to her 24/7.  The close call was just a warning of new risks, risks that always existed but now strengthen with Grace’s own strength.

Although I was a little rusty and clouded by panic, preparation saved us yesterday.  And yet, I am aware of the ways that our vigilance against trauma has chopped up my memory and wiped my imagination.  So that I can be someplace and not really there at same time.  There are whole rooms in my brain that I can no longer access.  And I keep expecting the Intruder to walk in and not mommy.





Support your Supporters

Introduction January 17, 2013 10:58AM, EST

One of the surreal things about trauma is that as helpless as you are, the people around you don’t always know how to help.  Concrete offers (with no offense taken if not accepted) are better than vague questions.  It can be exhausting communicating with all the concerned.  The hard thing about having a loved one in the ICU is that every moment reminds you how you are less powerful than the machines they are on.  To turn around and instruct others in how to help is an irony that can only deepen your own powerlessness.  Yet, this is somehow what I did as my first communication to the world.  Maybe it’s because I organize volunteers for a living, that I exercised some outsized need to control.  Maybe it’s because I was living in a certain level of unreality, planning a baby book for the perfect child I would one day take home.

Whatever the flawed motivations, I learned that even when nothing is guaranteed to help, the thought does count in the end.  I’m grateful for the quotations I received from people I would discover loved me more than I knew.  In those 4×6 postcards I learned that as the years pass, we don’t wear trauma on our sleeves as much but we can’t entirely cover up our resilience from it either.

Monday, January 4, 2010 8:31 AM, EST

Thank you everyone for visiting the site and posting on the message board.  We feel so supported from your thoughts, prayers and offers of support.  We appreciate your offers of help.  We are still finding the balance between our life at the hospital and life at home.  (Personally, I am adjusting to the constant communication via email and phone I needed to stay sane on bed rest to the constant running back and forth from hospital to home between a grueling pumping schedule).  Cell phones and non-immediate family are not allowed in the NICU so I apologize if I am not able to take you up on your offers to talk and visit.

The best support are your prayers and thoughts.  Inspired by all the verses and wishes posted here, we are putting together a book of quotations and prayers for Grace.  Please write your thought on a 4×6 postcard (size that fits her memory book) in bold print for us to tape to Grace’s isolette each day.  Include your full name at the bottom, city or relation to Grace.  We will switch these inspirations every day to inspire us and her caregivers and to whisper to her as a mantra, then we will place them in her baby book for her to have her whole life whenever she faces challenges or experiences triumphs.

Mail to 82 Charles St, 4R / NY, NY 10014.

Love and Blessings,


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