artAll families I know develop — unconsciously — a vocabulary specific to them. This can include everything from pet names to invented foods to the life-long adoption of mispronunciations from toddlerhood. Being in a nuclear family — a new nuclear family, not the one in which we grew up — is, in many ways, like having a glorious lifetime membership in a club in which we got to make all the rules and invite in all the members ourselves. By nature, it is empowering for the adult.

The innocence of this family vocabulary can seem silly from the outside because, most of the time, these new words are like long-standing and elaborate inside jokes. We have words like that in our family, too. The exception, for us, is the word “urp.”

“Urp” is the word we invented to describe the sound Sammi made when she had what we assumed to be reflux. Babies with reflux are a known entity — the baby silently jostles his own torso up and then — sometimes also silently — a stream of spit-up drools out, to be wiped away by an ever-present burp cloth. Sometimes, this baby-reflux interferes with sleep and comfort and so the baby is given reflux medication. This was what happened to Sammi at six weeks old; her reflux was silent and, oddly, never resulted in spitting up. She constantly smelled like sour baby vomit, but it was on her breath and not making up to her mouth.

Her pediatrician put her on a reflux medication. It got changed once when she was around a year old, then again at two years old, when our efforts to take her off of it were met with the constant sound we named “Urp.” The pediatrician — and we — had expected her to grow out of it, as babies do, but whenever she stopped taking it, there it was again: “urp.” It was a gurgling sound, followed by a hard swallow and a series of coughs. It was unnerving.

When she got old enough to talk, we would sometimes ask her about it. We’d hear “urp” and ask if she was ok.

“Jus’ my cereal,” she’d chirp, going back to her toys.

“It’s jus’ my yogurt.”

“It’s my dinner in my mouth,” she’d say as we pulled her pajamas over her head.

It didn’t seem to bother her. Sometimes it was eight or ten times per day. She never vomited, she never complained of pain, she never woke up gagging. Still, we worried about it. We had her bed propped up on an angle, gave her first the antacids and then the proton pump inhibitors. The medicine made the sound less frequent than when she was off the medicine, but nothing truly made it stop.

Urp. Just my breakfast.

Urp. Just raspberries.

We asked ourselves constantly, is she urping more lately? Why is she still urping? She’s three. Shouldn’t she have outgrown this?

We worried. We were professional worriers. Her pediatrician, both perplexed and long-accustomed to the mysteries of childhood illness and behavior, just kept telling us to wait a few more months and try again to take her off the medication. We repeated that cycle for years.

Urp. Just noodles.

Urp. Just water.

Just wait. So we waited.

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Tandem Tantrums


I never felt alone again after someone else admitted to me that she didn’t know what to do.

By the time Sammi was three, I had established a work-from-home-parent setup in our new town. Her big sister was in the early years of grade school, and Sammi’s visits to the school every day by stroller brought both of us into a brand new world of other human beings. Living as we had in seclusion for the first years of her life — both due to medical necessity and then the secondhand isolation that came from it — I was unprepared for the beauty that came with speaking to other adults every single day. Many of the people I met were like me, pushing strollers with younger siblings to the playground each morning and afternoon. Our walkable public school made for a glory of impromptu social gatherings. It was only a mile from our previous home but may as well have been another country from it in terms of the effect it had on my own mental health. I was able to connect regularly with a variety of other parents for the first time.

Also for the first time, I heard complaints about their children that echoed my own. One winter afternoon when I had managed to cram Sammi into winter clothing and push her rickety stroller the four blocks to the first grade exit door where her sister would come out, another parent with a baby in a stroller and a three year old boy dragging behind her waved at me. Her daughter and my older daughter Ronni had established a mutual admiration society which would eventually lead the way to one of the best friendships of our family’s life, but truly, it began for me when this mother answered my “How’s it going?” with the following lightning bolt of connection:

“How’s it going?! I’m done. I give up. I’m taking him in to be assessed for sensory issues. I can’t take this craziness anymore.”

Her son refused to wear boots. Or a coat. Or socks. I may have the details wrong, but I heard in it the same line of edge-balancing I felt in my time alone at home with Sammi. Sammi would not get dressed. Sammi would not go to sleep. Sammi would not eat. Sammi would not leave a place we were, or enter a place we needed to be.

She was also, like my new friend’s son, breathtakingly cute.

I couldn’t see the struggle in my friend’s son’s round, gorgeous face. No one could see my blond angel for the often furious child she was at home. It was invisible and, as a result, so was my real state-of-mind most days when I entered that playground. I waved, I connected, I made plans, I shared bags of grapes. Under the surface, I was desperate not to go home to another evening of screaming tantrums that reminded me so terribly of the sleep training that nearly killed her, and me.

Sammi’s tantrums regularly included self-harm. She smashed her head, over and over, into anything she could find — hard edges, hard floors, wood tables, toys. I wondered if she was trying to finish what her crazy cardiac anatomy had started.

That friend’s admission that she, too, fought the demons in her head — and the one small demon who lived in her house — changed my whole approach. When I found that she had years of experience in mental health services and even that didn’t keep her from feeling the level of frustration I did, it cemented in me the need to reach out and have things assessed. Once again, I called in the experts. Once again, I admitted that I couldn’t fix things.

Only this time, I was not alone.

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Inspiring Stories for Congenital Heart Disease Awareness Week

This week is Congenital Heart Disease Awareness Week, and I feel lucky to have been nominated for the Inspiring Blog Award at just the right time, thanks to Shelagh at The Open Jar. In thanks — and in an effort to pay it forward — I’d like to share and nominate these inspiring blogs of people in health struggles with their children — and one blog that offers fuel to get us through it.

  1. Little Earthling Blog: Apollo’s Story — the first story of a double aortic arch that I ever read online.
  2. Love That Max — a beautiful story of a mom and of kids with special needs who kick butt
  3. Charlotte’s Journey Home — the journey of a child with CHD and her awesome advocate of a mom
  4. Superman Sam — a cancer story followed by nearly the entire north shore of Chicago last year as Sam fought valiantly until his family went on to carry the torch
  5. Cybele Pascal’s Allergy Blog — practical advice for when food allergies and restrictions seem overwhelming

Thank you, Shelagh! If anyone out there has someone to nominate, please feel free to share a link in the comments.


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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?

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Thank You, Vaccinating Parents

There are lessons and important details we learn that apply only in very specific situations. Soldiers retain this kind of knowledge after a war, we know, as their bodies instinctively remain alert, their legs bending into a crouch they can maintain for as long as it takes. Former high school soccer players who drilled for hours resume bouncing a ball on their knees, twenty years later, the moment it makes contact with their right shoe. This knowledge has staying power, whether we want it to or not.

What to do with all of this now-useless knowledge?

I learned a million strange lessons in doctors’ offices and hospitals with Sammi in the years that spanned cardiac surgeries, gastroenterology drama, and  everything else her little body gave her to manage. This mastery I had over her health — the details only I could have described — has never gone away. I am vigilant; I am well-trained; I am fast-twitch muscles and marathon endurance.

This is why I panic at the thought of un-vaccinated children.

When Sammi was eighteen months old, she was finally in childcare just a few hours per week. She was under eighteen pounds, miserable to feed, and deeply, deeply beloved. She’d had ear tubes, a bronchoscopy, surgery to slice open the extra, troublesome arch of her aorta that had been choking her, and had her esophagus dilated. She was on anti-reflux medication. Her trachea, despite the surgery designed to free it, was at best thirty-five percent open.

Whooping cough, without a doubt, would have killed her.

One day, I dropped her off at childcare to spend three hours working, and I got a call several minutes later with the news of her fever — 101.3. I picked her up, took her to the doctor, and learned one of those sneaky lessons that never goes away, regardless of the fact that I’ll never need it again:

When your pediatrician sends your feverish baby for a chest xray, worry.

When the radiologist sends you to the lab for a blood draw before your baby even has her shirt back on, worry.

When the blood lab turns you away at the door and says your pediatrician wants you back in her office immediately, worry a lot.

Sammi had pneumonia. Her fever barely broke for days, the antibiotics gave her a horrific diaper rash, and her lungs were so wet and her constitution so weak that she lay on my chest in a sling and beat it slowly with her cold, sweaty hand, limply crying mama, mama, mama. I was right there. She was out of her head.

She lived through that pneumonia and another one a few months later, disconcertingly in the same lobe of the same lung. If that had happened one more time, there would have been another bronchoscopy to find out what was wrong with that lung. Thankfully, she never got that third pneumonia.

If Sammi had brought pneumonia to a friend’s baby who had consequently died from it, I would have been devastated and felt horribly, life-alteringly guilty, but I would know I might not have been able to prevent it. If an un-vaccinated baby, whose parents were within their rights to refuse vaccination, had brought my baby whooping cough, she would have died. baby with baby doll

Sammi had just over one-third of the airway of a normal child. You couldn’t tell by looking at her. On a good day, she probably had to work harder for air than most people.  I’m not questioning the right of parents to refuse vaccines for their children, but the fact remains that the consequences to babies like Sammi are real.

Is she one in a million? That I don’t know. She is one in a hundred million million for me, the baby I fought for, kept alive under hideous circumstances, gave over to a surgeon to slice and hospitals to pump full of drugs. It wasn’t easy to keep her alive. Vaccines? There was never a doubt I would send her into the world with anything I thought might protect her.

There are things everywhere that endanger the lives of our children, including other children in a variety of ways: bullying, gang violence, and, not least of all, communicable diseases. Would I throw my child in front of a bus to save yours? I must admit that I would not; the chances of her death would be too much for me. That’s too much risk. Would I teach her gentleness and kindness and generosity in a world that may, in the end, take advantage of her for it? Yes. That, I will do. That has a risk, but it’s smaller, hopefully, and falls in line with my values in a way I refuse to compromise.

That’s how I protect your children. That’s my thank you for keeping her alive, my thank you to the universe and to the other parents who cared for her and about her enough to wash their children’s hands, keep them away when they were sick, and yes, to vaccinate them. If there was a way for me to thank every single parent whose vaccinated children came in contact with Sammi in the years of her compromised airway, I would do it.

You helped me protect her. Thank you.


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