Rebirth of a Mother

TODAY, I WAS BLESSED to celebrate my fifth Mother’s Day.

A new mother is brought to life along with her firstborn. But in a way, I was reborn, a changed mother, when my second came along. What follows is a piece of that story.

Raphael: a name of Hebrew origin meaning “God heals.”

My baby silently picked that name for himself. In doing so, together, we chose life.

My second child was born a minute to midnight in the same hospital room I had given birth in nearly 23 months before. But this time, though labor and delivery was practically easy by comparison (well, not the transition part, of course), the instant my baby arrived, the entire world shifted.

My tiny boy lay limp diagonally across my thighs; a dark greenish-brown sludge covered him like an alien. He was whisked away before I could grasp the chaos around us. He had been swimming in his own stool in utero and aspirated the thick meconium on the way out.

A multitude of life-saving measures began. My husband and I watched a helicopter lift our newborn away before I could even hold him. We followed him to Children’s Hospital about an hour later.

Sometime that night I scribbled on a scrap of paper, “The moment I gave birth to my first son, I felt the most intense love of my life. At this moment, I feel the deepest void imaginable.”

Questions remained unanswered. We learned loads of medical terminology but not what was wrong with our baby. He had sepsis and an array of yet-to-be-confirmed health concerns. There was nowhere left on his body for another line or drain tube to go.

“He is a very sick boy,” doctors said solemnly. He needed to be stabilized.

By day three or so – it’s hard to keep track in the swirling madness of the NICU – the attending physician told us they were “running out of options.”

There had been no chance to bond with our baby. Caressing him would cause him too much pain and anxiety, a developmental specialist warned. We knew a lab was testing for Down syndrome, but we didn’t understand the extent of his potential disability.

Doctors needed our permission to attempt a life-saving treatment that involved removing the blood from our boy’s body to spare his heart and lungs. The risks associated with it were grave.

We consented.

First off, our child needed two things: to meet his big brother and to have a name – should the unthinkable happen.

“Raphael” was on our short list, and my brother-in-law looked up its meaning on his smart phone. It was an obvious choice.

That evening, I went to my infant’s bedside with an opened heart. I called his name softly. I asked him to stay with us. Please.

The next day, Raphael’s health began to turn around; he didn’t need that treatment after all.

I believe he needed his mommy to accept him and let him know it would be OK if he should stick around.

At times, our family’s had a rocky journey since, but in that moment when I went to my child and welcomed him into our life, Raphael began to flourish.

And my world shifted, once again.

This child, that painful situation, was galaxies away from what we had anticipated – from what we’d expected and longed for. In hindsight, what a gift it was that we got to really choose him that day.

New Life and Old Loss

My boys playing under our glorious apple tree

AS THE LANDSCAPE greens and trees bloom all around, the contrast between rebirth and remembrance become more vivid.

Last Sunday, I held my tiny new niece and didn’t want to let go. I love new life, its fragility and utter drive. Pure potential.

And though the experience of loving on 2-week-old Lucinda is such joy, I notice a touch of self-indulgent anguish still buried inside me from the tumultuous days when Raphael first came. As I cuddle the new baby, I jealously steal the moment I had been robbed of when I couldn’t even hold my newborn son at first. That was the beginning of overwhelm and stress, which, although changed, has never fully relented.

I know we lingered too long visiting tired new parents, and it led to my nephew, Liam, being late for his nap, but I left Greg’s brother’s family in a high and filled with love for them.

I splurged $3 on myself at the first sign of spring: daffodils.

Later that day, I met with Holly, sister of my very close friend who perished two and a half years ago from cancer. We got together to celebrate what would have been Krista’s birthday.

I miss talking to Krista every other day. I miss having her to rely on. I miss making her laugh.

View from where Krista's bench will go

It was beautiful out Sunday as Holly, her boyfriend, Rob, and I visited the site where we will soon place a memorial bench for Krista. We strolled around the CU-Boulder campus and took in the lilacs and trees in full blossom and enjoyed the freshness of a chilly April day in Colorado.

We brought our picnic indoors.

We donned silly hats and sang “Happy Birthday” and ate too much German chocolate cake – Krista’s favorite. We shared memories and talked about now. We didn’t feel like crying.

I realize that the pain of loss is not as raw as it once was.

I’ve been thinking about how time shifts things. I don’t believe it necessarily heals all but it brings new perspective, and life’s new pleasures and pain supplant old ones.

Raphael’s amazingly rapid development the last couple of months have made the glacially slow progress he had earned over the past two plus years seem compressed and less worth remembering.

Suddenly, my youngest is walking! He is stringing together ASL signs, speaking clear words, messily spooning a few ounces of puree on his own, and managing various textures of food with increased oral motor control and a more coordinated swallow. He even started peeing in the potty, which shocks my friends whose grade-schoolers with Down syndrome are still in diapers.

My poor left shoulder and back have been in real pain since I’ve been carrying my boy around for years, but today, he is trying to run to catch his brother. I can finally put a plate of tiny bites of soft foods in front of my child and step away for more than half a second to grab a glass of water. I no longer spoon feed every bite of Stage 2 baby food.

We are both becoming free.

Of course, I’m still overloaded to extremes and ridiculously behind in my things to do, but I think my recent liberty, both physically and emotionally, means I have space for more.

A sweet mama I know brought my family dinner a couple of years ago when we first got home from the NICU with Raphael, and she gave me a gorgeous orchid plant. Its petals promptly disappeared and the leaves fell over.

I was simply in constant triage mode, and the care and watering of a plant was beyond me. Yet I never threw what remained of the plant away. It was shrunken and sad but still alive. I guess I held hope that one day I’d be able to tend it (as well as tend to other lost aspects of my life).

In the middle of this past winter, Elijah pointed to the ignored plant and asked, “What are these little grape things on it?” I immediately reached out to stop him from picking them off. The plant was budding.

I started giving it loving kindness and water. I bought plant tape and propped up the stem with a stake and added dirt. The first flower bloomed.

And then over the course of weeks, another blossom appeared, and then another.

Five healthy gorgeous flowers now bring me joy in my kitchen.

Perhaps the orchid’s metamorphosis is a metaphor, a reminder of where we’ve been and how far we’ve come as Raphael’s third birthday nears.

He is blooming in so many ways. I’d like to believe so am I.

I like to think my relationships with friends have just been dormant, like the plant was. I’d like to think those friendships, and so many other things left on a figurative shelf, are patiently waiting, and some day, there might be time for them to bloom again, too.

Something extra: 3/21

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TWELVE HOURS, eighteen minutes, and 17 seconds.

That’s how much time the countdown clock on the World Down Syndrome Day Web site says there is until March 21, 2012, a day that has been universally established thanks to a recent United Nations vote, as a day to foster inclusion of and human rights for people with Down syndrome.

To celebrate the day tomorrow, my kids and I, along with at least four other local families with a young child who has DS, are meeting at a local pub on the Pearl Street Mall in Boulder.

We intend to be seen. We intend to show that we are normal families that do normal things. We intend to revel in our joy and great fortune of having a child with Down syndrome to love, to watch grow, and to constantly blow our minds with how much richer our lives are for having them.

March 21 is symbolic: 3 – 21. It represents that our children have three copies of the 21^st chromosome, instead of the usual two. They have that little something extra that leads to such extraordinary blessings.

Down syndrome occurs for no apparent reason in nearly 1 in 700 live births. It has always been a natural part of the human experience. It occurs in every part of the planet, which is stunningly illustrated in this video that promotes inclusion and shows the smiling faces of learners with Down syndrome from 68 countries.

Life with this genetic abnormality is widely misunderstood, discounted, and feared.

It shouldn’t be. Oh, it most certainly should not be.

In honor of World Down Syndrome Day 2012 (3/21), please do your own something extra and share a positive story with someone about a person you know who has been touched by an extra chromosome.

Awareness begins with me and you.

End of an era

Yesterday, just after midnight, I returned from a quick trip to Florida for my grandmother’s funeral. I feel great.

I’m on little sleep and just experienced quite a hectic schedule. Grandma passed on Friday, I published her obituary,  booked travel, and arranged childcare and a ridiculous amount of logistics on Saturday, and then I got on a plane early Sunday morning. The service was Monday, and I headed back the next day. All that was after several weeks of relentless illnesses, medical  interventions, a neighbor’s death, and so on.

You’d think I’d be sad and drained. But I’m not.

Certainly, I’m sad to have lost my dear grandmother, especially for her wretchedly slow demise in the end. My eyes welled up just a bit as I sat at my computer today and just breathed for a few moments. But I am happy. The funeral was good. Everything is okay.

My three sisters, cousins, and a handful of remaining friends and family came to pay tribute to a beloved and incredible woman. We sat around and told stories about my grandma and laughed.

Laughter and stories are what she was best known for. It was time for her to go, but her laughter still rings. It makes me want to be a better person. It makes me happy.

I got a breather between dropping my younger sister at the airport before dawn and my evening departure. My best friend, Linda, had come to be with me and my family, and we had time to walk along the beach and pick up seashells before our respective flights home. The ocean was one of my grandma’s favorite things. It was the perfect way to say good-bye.

She was born March 2, 1914. She was the last of her generation. Here is the eulogy I read at the funeral:

I wrote these musings about our amazing Ruth Lichtenstein on the airplane on my way here to Ft. Lauderdale. I want to tell about how much richer we are for having had her in our lives for so long. Perhaps the best way to do that is to do the thing she did so well: Tell stories.

In the summer of my eighth year, Mom put me on an airplane, and I got to fly by myself to Florida to spend a few weeks with Grandma Ruthie and Grandpa Archie.

I was a middle child. I was typically regarded as an indivisible part of the sibling pair known as “the two little ones.” Much of the time, I felt invisible.

That’s why, for me, being escorted to my seat by a flight attendant was VIP treatment. The plastic, golden airline wings she pinned to my top made me feel special. Having my grandparents greet me on the other side – at the very airport I nostalgically landed at just hours ago – was beyond compare.

Adventure awaited.

That was my eternal summer. Every day seemed to be all about me. Every thing was an adventure.

An outing to Kmart was an extravaganza. Grocery shopping at Publix meant picking out all my favorite foods and treats. For my birthday, we took a special trip to select my cake.

Every night, I had the privilege to ring that prized string of dinner bells that had moved with Grandma and Grandpa from the eighth floor in a Brooklyn high-rise to their dreamy Sunrise Lakes Phase 1 condo and ultimately to their place in Delray Beach.

Rainy afternoons were spent glueing shells and plastic beads to a felt-lined cigar box: an eight-year-old’s treasure chest!

Grandma took me for my first manicure. She paid attention to details and ensured I felt included. She asked about my best friend back at home; she always remembered Linda’s name. She and I dressed up and got to dance with Archie at condo night dances. We played Bingo.

There were hours upon hours of swimming with new friends while Grandma played cards and smoked poolside with the old ladies. As always, she introduced me to every one of her friends with swollen pride.

Daiyenu! I was over the moon.

The July heat intensified and my sisters came down to the Sunshine State, too. That’s when all the other Florida summers of my youth begin to blur together. That’s when I learned, but didn’t realize it then, that Grandma treated each of us girls, as well as Cousins Michael and Stacey, like we were each the most important person in the planet.

That was her gift.

Being with Grandma was entertaining, like being at a party. She made everything fun.

When she got old, and the countless books she’d read in her life and her 90 some-odd years of experiences melded and tangled in memory, her tales became unintelligible streams about people and places – all punctuated by the random, “Oy!”

She was still fun.

And always funny, especially when telling it like it is.

Last summer, Linda and I road tripped from Virginia to South Carolina to see Grandma and have her meet her newest great-grandchild, Raphael.

Aunt Judi pushed Grandma’s wheelchair to the front sitting room at Harbor Chase Assisted Living. For a bit, Grandma rambled on in her odd, disjointed way, while Raphael flailed about happily in my arms, making sounds and faces in his peculiar way. It was awkward. Grandma had been living in Memory Care and seemed to go in and out of lucidity. I couldn’t quite tell whether she or Raphael were really aware of the other.

All of a sudden, Grandma blurted, “Well, he’s an odd fellow, isn’t he?”

Well…. yes, in fact, he is.

I put my boy on the floor, and he proceeded to speed around on hands and feet, his tushy sky high. (The kid has a mean bear crawl.)

Grandma looked over and blurted out, “Look at him with his asshole in the air!”

Yep, telling it like it is.

When people describe Ruthie, they say she personified the old adage: “When life gives you lemons, make lemonade.”

Her life was not an easy one. She didn’t come from much means. Not everyone regarded her with the dignity she deserved. But she routinely turned the other cheek and used her life struggles, not just to punctuate but rather to heighten, her unbridled optimism.

So I don’t care to say “She made lemonade.” More so, I think Grandma Ruth sucked the zest right out of the lemons.

Ruth’s zest for living is her legacy.

She lingered on after old age and after broken bones as if to cling to something else, as if there were something more to enjoy.

She didn’t play by the rules of her day and did as she pleased. Traveling abroad on her own, trying skiing for the first time in her ’50s, getting her license when Grandpa died, getting a new suitcase for her 83^rd birthday to prepare for future trips, and driving herself around at an age most never reach (nor at which seniors should really be driving).

Recently, I watched a 1950s home movie that Cousin Greta Garber posted to Facebook.

It was of Cousin Charlie’s wedding. In it, Grandma and Grandpa are gorgeous – seated at the reception table, dressed to kill and looking like an A-list Hollywood couple. Grandma is laughing, of course – and daintily stuffing her face.

Yep, sucking the zest of every moment. Spreading her joy for being alive to everyone else at the table.

Ninety-eight years hold a lot of memories.  I could easily go on.

I could tell the story about the time Cindy, Sue, and Dad picked up Archie for a ball game and left me behind with Grandma in her Brooklyn apartment. Debbie must have been home with Mom.

I was young, maybe five or six, I don’t know. But, I remember Grandma decided she and I would take an impromptu bus ride to the beach.

She taught me how to pull the string to signal the driver to stop. She convinced me, despite my modesty, that my little girl panties with tiny yellow flowers could double as a bathing suit bottom. She wanted me to pretend I was a boy and go shirtless, but I wouldn’t have it. So Grandma had to do what she did best: She made do.

With a smile, she held up her towel and ripped a two-inch strip right off. She tied it around my nonexistent breast to improvise a swim suit top. We bounced in the waves together, I in her embrace, and chatted up friends she bumped into (of course!) on the crowded beach. As always, she introduced me and made me feel beautiful, and special. Like I was the most important person in the world.

Every year on my birthday and Chanukah, Grandma sent me a card, usually with a little cash tucked inside, and she addressed me as “My dearest, darling grandaughter.” I was her Bubbelah, her little darling. We all were.

And she, ours.

Crying over coffee

I burst into loud sobbing tears in Starbucks.

I had been avoiding going home. Greg was taking a sick day to care for our kids. I had spent the previous night in the Emergency Room with Raphael. I’d forewent so many recent potential earning days caring for my sick baby that my measly December paycheck will barely cover the last few weeks worth of hospitalization co-pays and new meds. So I gulitily justified that it was Greg’s turn and was stealing myself some solitude before the hectic bedtime routines ensued.

As Greg handled dinner, I killed time at the café, too distracted to work and reading a sunny blog I love to hate.

I was tired. That’s a vast understatement, but “weary” and “worn” are not quite it either. I was emotionally supercharged with the energy compression that comes after battling one more session of IV, wires, meds, and crying.

This time, again, my baby’s X-ray did not (thankfully) show pneumonia but that darn crackling sound in the lower left quadrant of his lungs made everyone with a stethoscope worry.

A pulmonary clinic visit had turned into a long, long night.

Raphael, sick, on the way to pulmonary clinic

I am actually glad Raphael was sick at Thursday afternoon’s appointment. Finally, the doctor could see what happens when Little Dude gets a cold instead of me just describing the sound of his rapid breathing (which, by the way, sounds like air being sucked, loudly, through a straw crammed full of wet cotton, that is, except for the scratchy gulping gaps every 20 seconds where nothing goes through at all). It was like going to the mechanic and your car actually does make that funny sound you can’t quite describe.

Even though Raphael amused with his sign language and gave the doc his winning smile, his racing heart, drought-stricken lips, and puffed eyes gave away that he was low on fluids and overdrawn on effort to oxygenate his blood. All morning, my boy had been burning hot and pouring out his stomach contents from both ends.

What happens is that as he labors to breathe, his little diaphragm works so hard, and so much pressure builds in his stomach that everything gets pulled out of him with lung exertion. He pukes, and sometimes blows out his diaper, over and over again.

I’d booked the appointment because Raphael was not getting well enough since his overnight stay at Children’s Hospital on the eve of Christmas Eve and I kept having to give him rescue meds, a bronchodilator, to open his airway. He had been waking more at night, needing to have his nasal passages sucked clean. He had been snoring increasingly louder while angling his head back at an unnatural angle to pull in air. I’d been wondering whether we should put him back temporarily on an oral steroid to reduce inflammation and give his lungs more opportunity to heal. I wanted to prevent a simple cough from launching into the vicious asthmatic cycle that keeps happening.

Thanks to someone’s cancellation, it took just a few more days to get my boy seen at the pulmonary clinic at Children’s Hospital. Meanwhile, his condition deteriorated.

As I packed the diaper bag for the appointment, I had a premonition that we’d be invited to stay, and I shoved my toothbrush, a Clif bar, and extra clothes into a bag, just in case.

Sure enough, Raphael’s pulmonologist wanted to admit him. I haggled, and we agreed to see the ER physicians downstairs, instead, first.

Guess what? We ended up with a scrip for the oral steroids I’d called about two weeks before.

Getting pumped with IV fluids helped, after it hurt, both of us

But none of that is actually what made me cry in the coffee shop.

All this medical intervention, and juggling priorities, and finding emergency childcare for Raphael’s brother leave an impact. At home, tempers are short. Hasty words sting. Sleep deprivation distracts.

The nagging worry that my son’s health could too easily go the wrong way – that he could die – breaks my heart and strengthens my resilience at the same time.

It brings me to a place that’s introspective and curious about the future. I review all that’s happened in the last two and a half years since Raphael came like watching a familiar timeline of dramatic peaks and dips unfold in my mind. And I just can’t make sense of it.

I daydream about having someone to just unload it all to. I ache for somebody to be kind to me.

Feeding the numbness with a hot drink and the Internet is what I was doing as I stumbled upon a photograph on that blog I mentioned earlier.

The image: a beautiful, young couple standing at an altar in wedding attire. The faces of the clergy around them beam in the way I, and almost everyone who meets him, look with amused admiration at my son. The bride and her groom have Down syndrome. It’s nearly imperceptible. The image strikes me. It reduces me to tears.

I’m a mama to a darling, sick little boy, and this is but a moment, I hope, in his long life, that’s filled with everything a mama wants for her boy: love, companionship, fulfillment.

Even good health.

I need to believe that’s possible.

Maybe he thought he was calling Daddy, not the nurse

Wedding image credit: Kelle Hampton’s shared photos

A light in the storm

Well, it’s been quite the chaotic December in our home and not just because of extra holiday shopping, cooking, visitors, etc.

Shopping exhaustion: Raphael fell asleep in my arms at the big box store (you know the one) and took a snooze in the cart.

The month started with the culmination of a long string of medical appointments for Raphael. Good news is his hearing is good, in at least one ear for sure. And his vision, though slightly imperfect, doesn’t warrant eye glasses. Hurray for pediatric audiologists and ophthalmologists who make the tests bearable for little ones and are good at answering endless parent’s questions.

I don’t even notice Raphael’s nystagmus anymore, but occasionally someone stops and asks me why my boy’s eyes move rapidly side-to-side. What would indicate a neurological problem in others is simply a genetic happenstance for Raphael. His brain has learned to compensate for his shaking baby blues. He sees in sort of a strobe light effect where his mind captures what he needs to see when it appears at the center of his field of vision and ignores the rest.

Raphael flirts with the eye doctor’s assistant. I’m starting to feel OK bringing him to clinic visits at Children’s Hospital when he isn’t in pain.

Fortunately, this season’s holiday parties and events came early in the month because the second half got pretty hairy.

The Toys are Back in Town!

Elijah engrossed in the sensory overload spectacle of “Toy Story on Ice.” Raphael tried to escape over the seat backs when the lights went down and the sound went up. He missed Act 1 by cowering in Greg’s arms in the lobby and slept on my chest with earplugs in for the second half of the show.

Does the music really have to be that loud?

Since late August, when school started, it seems everyone in our family has been sharing bugs back and forth. I know I never really feel not sick, and on my better health days I realize my shoulder is half killing me/half numb all the time. I was just not designed to be carrying around a non-walker for two and a half years in my left arm. (I try holding him on my right but it just doesn’t work and nothing gets done.)

Nevertheless, our hectic, ever changing routines keep us all going, and life’s small moments of joy have greater impact than ever before. School, work, birthday parties, doctors, therapists, special needs advocacy, and adapting every little thing… It never ends, but I think it has finally become our “new normal,” which is supposedly some way of being that people kept telling me we’d reach and I kept hating them for it.

Greg and I are giddy with every new word approximation Raphael utters, every independent step he takes across the room, and every new bite of actual food he manages to chew and swallow. Pizza! Who knew he’d be able to manage little bites of homemade pie. It’s becoming a family favorite.

We repeat every brilliant thing that comes out of Elijah’s mouth. A visit to his alternative school where Democratic Education is practiced sometimes feels like a scene from Lord of the Flies. Mud-encrusted children swarm for position every time a train passes by the backyard. Boys – some shirtless and clad in pink tutus, others in superhero garb – yield foam “swords” and swing from a rope. The apparent chaos is actually teaching my big boy a great deal, and we are blown away by our preschooler’s ability for abstract thinking and the wondrous things he says – for which I repeatedly kick myself for not writing down in the moment.

What I love about my kid’s preschool is that as long as it’s not frostbite-cold out, outside is a classroom. There is always a teacher outdoors so if that’s where a kid wants to be, that’s where he learns. Each child is responsible for himself and the greater school community but that responsibility is paired with tremendous freedom. It’s a boy’s dream school.

Pigpen’s, I mean, Elijah’s happiness is directly proportional to how dirty he is when I pick him up – which makes me happy, too.

So my family had been trucking along pretty happily since Turkey Day, and I looked forward to the last couple of weeks of the year to have Elijah home on winter break, maybe slow down a bit, and perhaps get a bit caught up on the perpetual to do lists at home and work.

Then Raphael got sick.

Plans changed.

A cold, which isn’t a big deal for most kids, can become a dangerous villain for my little one. He is a super strong fighter and has been through more in his short life than most grownups I know, but in many ways, his health is too delicately balanced.

Truly, I could do without reminders that life is fragile.

This time, nasal congestion lingered and came with raised spots on Raphael’s tongue. He had a bunch of rough nights and began refusing more and more types of food and drink. He kept pointing to his throat and throwing his head back as if to say it hurt to swallow. (Later, his pediatrician would say that inside his throat looked like hamburger meat.)

Raphael’s occupational therapist was alarmed by his increased choking on soft melty chewables, and then his refusing home-made purees, and then his only accepting two kinds of baby food and only when served directly out of the jar. She advised taking action to avoid a food jag.

“Don’t offer the same food more than once every three days,” she recommended. I began wasting precious time trying new recipes only to end up throwing more pureed food down the drain than ever.

Raphael has a long way to go to be feeding himself a diet of variety but he had been making good progress recently. Now, suddenly, I became worried about losing ground on the feeding front, which I work so hard on with him at every meal. It’s not easy to keep a calm demeanor when you’re worried about food aversions setting in and about a 23-pound person dropping weight. Ugh, stress.

Raphael and I visited his new pediatrician, and I was told I’d have to just hang on and bear it until his virus passed.

OK, I wouldn’t allow myself to overreact to my boy’s food refusal. “This will pass,” I told myself and stopped at the grocery for Pedialyte since my homemade sugar/water/salt/banana oral rehydration solution had been roundly denied.

Raphael got sicker. And sicker. He barely ate or drank, kept putting his head on the floor and signing “sleep,” and developed a fever.

Greg and I barely slept and began bickering during middle-of-the-night holding-our-boy-upright sessions. Eventually, Raphael would only sleep if one of us held him while standing in the bathroom, doors shut, fan blaring. He wouldn’t even let me sit on the toilet lid to rest.

Back at the doctor’s office about a week after the first visit, Raphael was diagnosed with a double ear infection and put on antibiotics, which began with shots in both of his skinny legs on the first night of Hanukkah. That, in lieu of a family celebration.

Raphael rallied the next morning but then started getting recurrent diarrhea blowouts along with more vomiting, coughing, and fever. Bagged stinky clothes and towels piled up on my laundry room floor. By Friday, even though he was finally giving me smiles and playing a bit, Raphael couldn’t get his blood oxygen saturation high enough, so Greg took him to Urgent Care at the Children’s Hospital satellite near our home. (By the way, I use this pulse oximeter from Costco to measure blood oxygen.)

My sister and her kids were visiting, so for the first time, I wasn’t the one to take him.

Raphael with Uncle Josh. I let urgent care wait a few hours since my east coast family was in town for just the day before heading to the mountains on a ski holiday. Raphael perked up surprisingly amidst adoring cousins and plenty of presents to open. A little fun before the storm.

 Copay for hospital admission? $500… The cost of holiday gifts? Too much to share (my husband might read this blog)… Elijah’s exuberant rolling-on-the-floor reaction to opening the Star Wars Y-wing Starfighter his Aunt Cindy gave him? Priceless!!! (See him? Under the box?)

At Urgent Care, Raphael fought like crazy to prevent the medical staff from poking and prodding him. It took four people to hold him down while they did a deep suction of his lungs and got the oxygen tubing attached to his face, both of which ultimately helped.

After several hours and a long wait for interpretation of a lung X-ray (I can’t even count how many radiation doses my son’s had by now), Greg and Raphael got an ambulance ride to the main Children’s campus. Because of our experience in handling similar past episodes, the doctors debated letting Greg take our boy home instead, but we have to be medically aggressive to keep pulmonary hypertension at bay, and hospitalization won.

This is maybe the fourth or fifth time Raphael has had Bronchiolitis, which is similar to RSV but is caused by a number of viruses. Raphael’s lungs were extraordinarily challenged at birth, and he has a tiny, reactive airway and an uncoordinated swallow, so every mucous-causing cold can become devastating when he lies down and phlegm collects in his throat and the vicious cycle of pulmonary/gastrointestinal reactions start.

Fortunately, this hospital stay was short, and discharge went much quicker than we’ve experienced in the past. Greg and Raphael were home for a late lunch the next day thanks to a ride home from Uncle Sean.

Cousin Liam, four days younger than Raphael, offers Elijah a Hanukkah present.

The next few days Raphael regained strength and suddenly blurted out a new word: “Eat!” It’s funny because that’s exactly what he wouldn’t do when most of his energy had gone toward just breathing. Poor kid was starving.

He’s putting on weight now and trying to walk and talk and chew again. My kids are back to their silly antics.

No matter that I’m once again used to the tangle of cannulas and extra meds and the new sound of the oxygen concentrator producing a whirling/pulsing/sucking background noise around the clock.

Toys juxtaposed with oxygen tanks. Just not right…

Elijah having fun with the boxes gifts came in and the Tinkerbell cake he begged me to buy.

 Not a hat: Raphael has a weird thing about putting his brother’s underwear on his head.

Our holiday ended a couple of days ago and as we celebrated the miracle of lights, I was reminded about how grateful I am for my little miracle boy. He and his brother are truly the light of my life.

We’ve come a long way since this time last year. As the new year begins may you, too, dear reader, be blessed with love and light.

All my boys watching the full menorah’s candles burn on the eighth night of Hanukkah. (Yes, of course, the oxygen was turned off while he was near the open flames.)

As bad as it gets

Everybody hurts.

A close colleague’s husband is suffering from devastatingly painful throat cancer.

My grandmother is stuck in bed possibly for the rest of her life while her devoted daughter, my Aunt Judi, visits and cares for her every day as she has done for years.

I have a friend who drinks too much to escape her narcissistic husband and worries she cannot protect her children enough from his hostility.

A family member is starting life anew as a single mother who lost her house and suffered a few years worth of mysterious physical pain, dying friends, and lawsuit hell.

Everybody copes, some days better than others.

For me, Raphael is an everyday counter balance to life’s hardships.

When things get tough and despair tries to squeeze its way in to my psyche, my son’s mere presence on the planet is enough to put me straight. No matter how bad things are, I have in my past the “badder” thing that contrasts all else.

There are so many ifs and could-have-beens that might have claimed my boy’s life for good early on, and that agonizing experience, embedded in my cells, is forever more a litmus test for me for how hard things can get.

When my dear friend passed away a few months after we got to take Raphael home, it tore a hole in my heart, but the pain was not the same for me as what almost was.

Hurt is more survivable when deeper wounds have already begun to heal.

Past hurt is where I draw my strength. More important, it is where I draw from for limitless joy.

I revel in my good fortune.

And if sometimes I get stuck on some rollercoaster of doom, I just hang on.