Appreciation

For roughly six months — from about eighteen months old until about two years old — Sammi was a normal toddler. She did normal toddler things, had normal toddler colds, slept like a normal toddler. We moved from one house to another, and she adjusted as toddlers do — haltingly, in spurts of joy and regressive frustration. She and her older sister, now both on two feet and walking, hand in hand, moved through the world as a little team. They explored our new home, finding the places they could inhabit and climb, staring out new windows onto an unfamiliar street. I, hausfrau and telecommuting consultant, bustled around in fits of unpacking and putting-away.

We began getting a box of vegetables every week from a farm. I learned to cook kohlrabi. It was the very picture of domestic cliche. I saw us in the Paul Simon song “Beautiful,” singing to myself, “Back in the house, family of four, two doing the laundry and two on the kitchen floor.”

This could work, I thought. This could be ok.

Sleeping toddlerThe shoe was waiting to drop, however. Regular struggle steals more than the moments in which it pushes us; it steals the innocence of all moments before and after. That summer when I set up house, learned to cook, anticipated Ronni’s kindergarten year and toilet-trained Sammi — that was another tease, another prelude like my easy pregnancy. Something sinister was always coming. Is always coming.

Sammi’s ears were perforated by tiny tubes — common among children now, she’d had them placed the same day that her doctor had discovered her double aortic arch. It meant that infection didn’t sit, festering, in her ears when she got a cold. It either drained into sinuses or, sometimes, out of the tubes and onto her pillow, leaving a puddle of ooze smeared across her face and in her hair as she slept. Once, I arrived at her child care to find her still asleep, the ooze soaked through her mesh cot and dripping on the floor below her. I took her to the pediatrician on-call — not our beloved regular doctor, but a cranky older man who’d seen everything.

“It’s earwax,” he said, when I described how I’d found her.

“But it was green,” I explained, “and a little orange.”

“Not an infection,” he declared.

We went home. The next day, her face was swollen and she had a fever. I called our pediatrician, who prescribed ear drops, oral antibiotics, rest, fluids.

This scene began to repeat itself until, ostensibly, the tubes fell out or became useless. Infections began to collect in her sinuses on a regular basis.

Her pediatrician mentioned adenoid surgery offhand. An aside. Maybe. For later. If this didn’t improve. Also tonsillectomy. Maybe.

David and I knew, the minute that the words “adenoids” and “tonsils” released themselves into our orbit, that Sammi would have them out. We saw it coming and waited for it, impatiently, like a train terribly late but utterly expected to arrive: she’d have them out eventually. The pediatrician had a magic number, and that was three. Sammi needed to have three sinus infections, and then we would return to the otolaryngologist for tonsil/adenoid assessment. There was no doubt she would have three infections, and so after the first, we secretly hoped that the next two colds would end up there. Colds became fevers became sinus infections became antibiotic stomach issues. The autumn and winter filled themselves with her misery, head down on a large cushion on our living room floor, watching tv limply.

When the otolaryngologist examined her in February of 2008, he used the words “impressive” to describe her tonsils. When she opened her mouth, he said, “Oh my lord.” The tonsils and adenoids came out in mid-March, her fifth experience with general anesthesia. Her airway issues interfered with her recovery from the anesthesia, forcing us to stay overnight in the hospital with her. A family member visited and observed, from the foot of the bed, Sammi propped against her pillows watching cartoons.

“Dora!” Sammi croaked, squeaky and hoarse at once. She clapped.

That family member burst into tears.

I could not understand what was wrong, and asked her. She said, “It’s just so hard to see her like this!”

Like this?, I thought. Happy to watch cartoons in bed? Eating a popsicle? This, I thought, is the best it gets. This is alive. This is another round of anesthesia over, another defective part of her gone. This is a damn party.

I am on guard. The perfect moments — children playing in a living room of empty boxes, summer squash sauteing on the stove, medicine that works, surgery that doesn’t kill my child — the perfect moments are always before or after something else. Since Sammi was born, I have lived every experience partly in reflection and anticipation, asking myself how I will appreciate or regret it later or how it compares to the moments before.

It’s a hoarding, truly. I am collecting my time with my children, categorizing it, weighing it, blessing and cursing it and setting it up on display in my head for assessment. The through line: are you appreciating this?

Well? Am I?

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

The Soup

soup & ladleThere were several points in her life when we thought Sammi might end up with a feeding tube — when she couldn’t gain weight after her first cardiac surgery; when she was diagnosed with eosinophilic esophagitis and an unhelpful parent told me that’s what happens eventually to all of those kids; and when eating became such a chore that we thought it might be better than the daily fight to feed her. Expecting it to happen on and off for nine years has made me at least peripherally aware of the vocabulary around tube-feeding — NG tubes go in the nose and down to the stomach, G tubes are surgically installed right into the stomach with a button that opens and closes to insert the tube. It’s one of the reasons why Sammi’s soft, white belly is my favorite place to kiss: I secretly always worried it would end up marred by that button.

But it didn’t. Instead, I became the MacGyver of cooking for every crazy restriction she had, self-imposed or medically required, and a combination of luck and persistence kept her from ever needing a tube. Foods came in and out of her life depending on how she felt and the diagnosis we were managing, but a few choice dishes survived nearly every restriction. The first food I learned to make that she really, really liked was a very simple chickpea soup I adapted from a recipe I found in Vegetarian Times magazine.

It has become such a staple that we call it The Soup or Sammi’s Chickpea Soup. From experience, I can tell you that, aside from the fact that it’s delicious and very cheap to make, it also works for all of the following dietary restrictions:

  • Soft foods only
  • Vegetarian/Vegan
  • GERD diet (no citrus, tomatoes, chocolate, caffeine or alcohol)
  • Dairy free
  • Gluten free & Wheat free
  • Soy free
  • Egg free
  • Nut free

That winter after her first cardiac surgery, with the threat of feeding tube constantly dangling above us, this soup was the savior. I could melt two tablespoons of extra virgin coconut oil into her bowl, adding more than two hundred calories per serving. Sometimes, she ate only this soup and blueberries for days and days on end. I made several batches per week.

This soup made me feel powerful. It was a weapon I could use to fight the ribs I saw sticking out of her back and the shape of her skull so prominent under her thin downy hair. This soup let me do something about what was wrong. I fed it to her spoonful by spoonful until she could hold a spoon herself.

“Swallow, sunshine,” I told her. “It’s your soup!”

This soup is my hero.


Sammi’s Chickpea Soup

adapted from this recipe by Vegetarian Times

1 Tbs. extra-virgin olive oil
1 medium onion, diced
4 cloves garlic, minced
2 (15-oz.) cans chickpeas, rinsed and drained
2 cups water
2 cups vegetable broth
1 bay leaf
½ cup roughly chopped greens — any greens will do (spinach, chard, parsley, kale)
1 ½ tsp. salt
1 tbsp fresh lemon juice (optional)

Saute the onions and garlic until the onions are translucent. Add all the other ingredients except the lemon juice. Cook uncovered over a medium-high flame for roughly fifteen minutes — until the chickpeas can be mashed against the side of the pot with a fork. Turn off the heat, remove the bay leaf and, using an immersion blender, puree the soup to the consistency you like best. If your diet and palette allows, add the lemon juice and serve.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Untethered

As expectant mothers, we all spend a fairly intimate and intensive period of time with our obstetricians or midwives, only to have the relationship effectively end after the six week postpartum checkup. It’s disorienting to have someone so focused on your health suddenly drop out of your life entirely. The same thing happened to us with regard to Sammi’s health after every chapter of her medical journey ended. Some would make returning appearances later, but we only know that in retrospect.

When Sammi was released from the hospital after her first cardiac surgery at 14 months old, we were essentially released entirely from the care of the cardiothoracic surgery department. On a Tuesday, a man had his hands quite literally on my daughter’s aorta, and on Thursday, we walked out of that hospital with the expectation that we would never see him again. His advanced practice nurse told us that children with double aortic arches seldom need any followup care.

It is hard to explain what it felt like to carry her out of the hospital that day. She had a four inch incision running the length of her shoulder blade, covered with strips of surgical tape. Our only instructions for her care were to scoop her up like a newborn, not under her armpits, for six weeks, and to return her to her normal diet.

What was her normal diet, anyway?

At fourteen months, she still would not eat anything more than stage-one baby food from a jar, which is the consistency of watery mashed potatoes. She hadn’t even eaten that in weeks due to the pre-surgical dietary restrictions. Her pediatrician told us to treat her like a baby just starting solid foods and offer her everything. Shortly after we returned home to her joyful older sister, I snapped this picture:

Sammi & Ronni with snack

Sammi had never eaten a cracker in her life, but she was following Ronni around the house when Ronni was eating little bunny-shaped cheese crackers. Ronni offered her one, and Sammi shocked both of us by eating several.

“She’s eating another one!” Ronni kept shouting.

I cried, a little.

Sadly, it never amounted to much. Sammi went from sixteen pounds and nine ounces before the surgery to sixteen pounds and one ounce after it. She gained no ground in the first month after her release. We tried to get answers from the surgeon’s staff, but they had already done their job. They are not clinicians; they don’t manage day-to-day life. They cut and sew and mend structural problems. Ours was not for them to manage anymore.

We went to our pediatrician. She conferred with the otolaryngologist, who sent Sammi to have her esophagus dilated — now her fourth time under general anesthesia in a three month period. The radiologist who looked at her esophagus under anesthesia said that it didn’t look very constricted at all — barely worth dilating — and that what was more troubling was the musculature of her esophagus, which was uncoordinated and spasmodic in some places. It’s called dysmotility, he said, and no one knows whether or not it will go away.

For two days after that procedure, Sammi ate real food. She ate pizza one night. I took more pictures and called all of our friends and family, and then after two days, she stopped.

Her pediatrician gave us three months to put weight on her or she would insist on a feeding tube.

The surgery meant to end these struggles was a tease. The surgeon brushed his hands together and walked away, the doctor who dilated her esophagus shrugged and moved on, and the pediatrician, earnest but far out of her league, suggested Carnation Instant Breakfast.

I am just a parent. I am not a doctor, I am not a dietician, I am not a magician. I didn’t know what to do. I was alone with a baby and a never-empty bowl of blueberries in cream. Doctors cut her open, stretched her insides, gave her drugs, and then sent her home with me. Your turn now, mom. Don’t mess this up.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Laid in Arms

hospitalDavid, Sammi and I slid into the hospital the morning of her first surgery the way a reluctant toddler comes down a slide. All sorts of practicalities handled, bags packed for a hospital stay, all that remained was the hour of waiting in a room with a baby we might never see again.

If that sounds maudlin, that’s because it was. The risk to this surgery was smaller than most cardiac surgeries, but there is always a risk to surgery. The doctors would slice into my smooth, perfect, luscious baby’s back, pull her ribs apart, and decide which branch of her aorta to clamp and remove. The very thought of it made me weak. And yet, my job was to hand her over to these doctors who didn’t know anything about who she really was. They didn’t know she could sing. They didn’t know how much her four year old sister adored her. They didn’t know about my ambivalence about her for the first months of her life, ambivalence that I worried would make the universe believe that I didn’t want her, after all, and maybe it would take her away from us to punish me for it.

We passed Sammi around the pre-operative room — David and I, his mother, his sister, and her husband. After I refused to give her to a strange doctor to take away, screaming for me, they gave her a shot of Versed, an anti-anxiety drug that made her loopy and cross-eyed. When the anesthesiologist came to take her away, she waved at me as she was carried down the hall in his arms.

Once she was out of sight, I fell sobbing into the arms of my sister-in-law. She and I had never been close, but sometimes, the right person at the right time becomes a lighthouse. She was solid and soft at the same time. I think I fell on her because she was the very nearest person, and all my hold-it-together just dissolved once Sammi was truly and in every way out of my hands.

The details of the day — the waiting, the surprise visit with pastries from David’s aunt, the moment when the surgeon came to tell us that everything went well — these are the uninteresting snapshots of someone else’s life, the ones we look at politely but cannot connect to our own. The universal is in the humanity of kind people when you need it the most. That hug. Those pastries. David’s hand on my shoulder when we learned that they were closing her incision, and my memory flash of his hand on my shoulder as Sammi had been born, with me flayed on an operating table, paralyzed, unable to help her. She’d lived through that. She would live through this.

I couldn’t do anything to keep Sammi alive except to go and find the people who knew how, and to lay her in their arms.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Becoming Amazing

sammi chewing on my pantsWith the diagnosis and all the accompanying realizations about why the first year of Sammi’s life had been what it was came a less obvious change in my life as a mother:

I became amazing.

In the span of one bronchoscopy — the real thing, the right test that showed us that her airway was 70% constricted — I went from that crazy, unhinged, unreasonable mother at whom everyone shook their head to the heroine of my family. My stubborn insistence on nursing her past her first birthday became a gift all acknowledged as selfless and stroke of genius. My willingness to hold her when she cried, carry her in a sling against my chest, sing to her and not utterly fall to pieces at the news of her upcoming cardiac surgery — all of these were held up as Brilliant Motherhood Personified.

Just look at her. She’s an incredible mother.

I felt like grabbing everyone who said that by the shoulders and shaking them, not just then but for years to come, through all of the followups and complications and all of the diagnoses and procedures, and saying “WHAT. IS. MY. OTHER. CHOICE?” Truly, I have never understood this statement, kind-hearted and well-intentioned as it is. It’s a statement that claims there is something magical about a mother who does the right thing for her child; there is something truly special about a mother who listens to her instincts; there is something miraculous about a mother who puts her foot down and says “I will not stand for my child’s discomfort a moment longer.”

Truly, that mother is all around us:

She is saying “no” to homework for her sensitive eight-year-old.

She is walking away with her back turned from her kindergartener who is sobbing, knowing that her presence only makes him cry harder and that he’ll have a great day in his classroom once she’s gone.

She is pushing the pediatrician to look in her toddler’s ears just once more because she knows there’s an infection from the way his nose is running.

She is feeding her six year old the same chicken nuggets and carrot sticks every night because dinner is not the battle on which she wants to base their relationship.

And she is me, standing in a hospital room with four-month-old Sammi, who is screaming and screaming against my chest, IV under a splint in one arm, unable to nurse because her breathing is too fast. She is me, begging the nurse to do something, knowing this is not how Sammi cries, knowing that being held and sung to is always enough. She is me, shocked beyond words at the suggestion by that nurse that Sammi’s pained, hysterical wailing could be soothed by a Baby Einstein video, shocked and stunned that the nurse would shake her finger at me and tell me that I should know by now that babies cry sometimes and we don’t always know why.

She is me, four hours and a nursing shift change later, drenched in sweat and holding Sammi in the crook of my arm in a hospital bed, both of us deeply asleep after the new nurse discovered that Sammi’s IV had infiltrated the tissue of her arm, filling her skin with IV fluid from the tips of her fingers all the way to her armpit. With the IV removed, the screaming had stopped, and Sammi and I had collapsed, utterly exhausted, into that bed to sleep, pressed into each other for the rest of the night.

I was an amazing mother when I was preparing and getting Sammi through every surgery, but I was an amazing mother like all other amazing mothers every time I listened to that voice in me that told me something was wrong. That’s not amazing, really. That is what motherhood requires of us.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather