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Posts from the ‘Motherhood’ Category

Hope is too Busy to Wait

Hope is too busy to wait to be discovered

The past three days have been exhausting even with the help of friends and family and the fun surprises delivered. Thank you so much for bringing light to our days. Spring blossomed overnight here. On our walk to the playground there is a canopy of pink flowering pear tree I stroll Margaret under and it reminds me of all of you surrounding her in prayer, light, hope, good vibes, whatever it is you call what you do when you write “thinking of you.” Even the 20 something male clerk at the Whole Foods told us “I am not really a pray-ER but you are in my prayers.” The honesty of his statement disarmed and entertained me so I squelched the urge to question where exactly that put us “if in prayers never prayed?”

Margaret has shown signs of progress each day from energy level, to less pointing to her rib and complaining of pain, to more willingness to abide by her rigorous schedule for bolus feedings to taking yogurt or thick purees by mouth successfully with concentration. The latter helps yank me out of the part struggles with PO feeding and believe this recovery can actually be shorter and dare I say, complete, if there is such a thing.

Tomorrow we go back to the OR for a bronchoscopy to see if her airway have held the shape of the grafts without the stent to hold it open or if it has collapsed in, dissolved the stents away, or merely swollen shut. The reaction of her body to the grafts will determine our next step and possibly chart a course for recovery over the next 3 to 6 months.

Today a hospital mate of ours who had the same type of surgery (although all cases are different when it comes to airways and trachs) got great results today and sent me a photo of a good looking airway and grafts so I am feeling more confident going in tomorrow than before.

Someone recently told me they just had a feeling it would all work out that you can tell just by looking at Margaret and her spirit. While this is true, I am also aware that it is not just some glimpse of luminosity that determines our hope for the future, it is also the attention to the details of her care that get her back on track and allow her to heal. Some have the privilege of looking at a distance for hope among the forest, but a few of us can only look for it while tending to the trees.

The day of MGs surgery I learned a mom from my trach parents support group lost her daughter much like Margaret but two years younger with a twin brother. She turned blue without warning and no trach change, CPR or EMT could bring her back to consciousness. They donated her organs two days later. Hope for the future feels very different when experienced through the vigilance of the present.

Today, I saw a bright red cardinal in the wooded area beyond my room. It sat regally on a high branch of a very tall tree. In my state of sleeplessness, I envied its stillness. I worried if I opened the door, the sound would scare it away and that my approach would surely make it fly. I went outside anyway. It remained but watched me and I it, then a saw a flash of burnt orange in my periphery as a robin swooped down into the muddy creek bed between the trees and the bank where I stood. The robin moved frantically around looking for worms. It registered me but kept moving in my directions in search of food. My eyes darted back and forth between the two birds. My attention wanted to draw closer to the cardinal’s scarlet silhouette but pulled back to the robin’s bobbing breast. The cardinal flew off in search of solitude or a safer distance. The robin remained aware but undisturbed by me, not allowing distraction or fear to keep it from its task at hand.

Too often, when we talk about hope, we describe it like the cardinal in the tree, a streak of scarlet in stark contrast to a dreary landscape but that image never lets us come too close before disappearing from sight, looking for a higher perch or a quieter setting where it can sit undisturbed by human on-lookers. That hope flew off the moment (3 years ago) I realized a healthy child is not only an unattainable goal it is an illusion for human life than the label “medically fragile” we brought her home with.

I could not outlast the robin. I grew tired before I could watch her fly off. She was just too busy wading through the mud, searching for food, maybe for those who share her nest. Her orange breast now the brightest thing in the wooded area and also the busiest. When it comes to hope, I suppose I trust the robin’s perspective more than the aloof one the cardinal took today.

So tomorrow at 9am, don’t search for some quiet place or anesthetic mental state to send up a flare for us. Make yourself busy and useful and hope that one day MG (sedated for the 18th time) will be that too …very soon.

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.





Becoming Real in the Recognition

When do we become real for one another? In the beginning week, my daughter and I only spent a few hours together and never touched.  She was cared for more by nurses on 12 hour shifts than me.  My son didn’t meet his sister for two months because it was flu season and he was too great of a risk.  But birthdays and cupcakes were something he recognized.

The celtic spirituality teacher, John O Donahue, speaks about the isolation we cannot penetrate in others but that there are moments of recognition that make the gap between our transient and eternal selves bearable.

Saturday, January 9, 2010 8:28 AM, EST

I went back to see Grace Friday afternoon.  She was back up to 30bpm because of C02 levels in blood.  It looks like this weaning is going to take longer than expected.  We pray the medication for the PDA will work well to help with the weaning off vent, but that it will not affect her gut or kidneys too much.

They were changing her tube so I was able to get photos not only without blue light but with a better view of her face!  This will be good to show James and David (who was feeling ill and therefore not able to go see her yesterday.  How hard that will be to get through the days we can’y visit if we get sick this season).

These will help us introduce James to the baby.  We celebrated her 1 week birthday on Thursday with micro-cupcakes for the nurses and for James.  He is now very interested in “the baby” and “Margaret Grace” who gives cupcakes.  Hearing him pronounce “Margaret Grace” perfectly somehow makes her presence in the family more real for all of us.  He’s never seen her, but he has no doubt that she exists, why then should I doubt she will come home?

To get photos of her open eyes while her hood was up, I sang “Over My Head, I hear music in the air.”  not quite like Bertilla would but I guess MG is partial to mommy’s voice because she looked right in my direction and flashed those dark blue baby eyes.


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