Part Four: Home

January 12, 2014 § Leave a comment

ONE

home

We’ve Got This

Ultimately, we would remember the summer of 2012 as a strange and euphoric balance of sweet relief, strain, fear and overcompensation.

Lucy came home the last week of May on her thirtieth day of life. The NICU was behind us and we were relieved to have our baby home. We could now fall in love with her all over again within the warm surroundings of our family home. We could feed and change and dress her, at long last, within the lovely confines of her new and pristine, waiting nursery. We were heartened to see her sisters enthralled by her. We were still finding our comfort zone with the management of the feeding tube and her medications. The impending surgery loomed over us like a dark anvil cloud in the distance from which the sun would metaphorically peek in and out.

We could now welcome visitors over to meet our newest pride and joy and we did so with shocking frequency, for us. We would even host several large-ish gatherings within a short span of time, which at first might’ve been justified as a natural gladness to have our friends and our lives back. In retrospect, though, we both feel that it went a little past that. In fact, after talking with others who have had similar experiences, we’ve remarked about the possibility of a trend. A mini-phenomenon, peculiar to “new to the club” parents of babies born with special needs.

Whether we were unwittingly throwing ourselves Welcome Back to Earth parties or trying to prove to ourselves and everyone else that we were a normal, maybe even highly functioning family and not one to be pitied or concerned about, is anyone’s guess. But the trend of overcompensating for something seemed to continue for at least the entire summer, and is still something we think back on and wonder about.

We went everywhere. We did everything, it seemed like, and we did not say No. We made our annual trip to Colorado. With the benefit of hindsight, though, the high water mark came in mid-August. Five days after returning from our long vacation, and before we were even fully unpacked, Missus took all three girls – by herself – three-and-a- half hours away to the coast for a multi-family beach weekend with our good friends. I had to stay behind and work, but didn’t try and talk her out of it, knowing she would have plenty of willing help. That in itself may or may not seem questionable.

Questionable, though, is doing it again. The very next weekend. Which we did — my family, this time. Two consecutive weekends of long road travel, quick turnarounds, overcrowded condominiums crawling with kids, sand, more sand, wet heat, and more hot, wet heat. Obviously I’m not a beach guy. You can have them all. But who does this with a newborn? With bottles and formulas and feeding tubes and medicines to manage? Overcompensating “new to the club” parents of babies born with special needs, perhaps? All I can say is it didn’t seem strange at the time (we had this, right?), whereas now the mere thought crosses my eyes which causes my head to hurt.

 

Dropping it

It was one of the very first times we found ourselves replacing Lucy’s feeding tube at home and we had everything spread out on our king size bed, ready to tend to business. Even though we’d been adequately schooled and supervised, tested and retested and deemed competent in the hospital environment, there was a mild tension in the air going in.

We double-check our inventory: The tube, the gel, the tegaderm (cut to size); the stethoscope to check the placement, listening for the puff of air; the tiny syringe to provide the puff of air. We take the length of tube and hold the bottom end just above Lucy’s navel and stay it there with the thumb and forefinger. With the other hand, you slide the tube through your fingers toward the opposite end, fashioning a straight line from the navel to the tip of the chosen nostril and keep a grip there on the tube. You make note of the centimeter count. Now you have the depth. That’s as far as the tube needs to go down. We decide Missus should perform the placement, get more reps, since she’d likely be doing this on her own soon because of my shift work schedule.

She peels the tube from the plastic sleeve and thoroughly coats it with the water-based silicone lubricant. My job is to hold the hands, keep Lucy distracted, keep her legs still if I can when she gets to squirming. Middle is doddling around, just trying to be near us, not causing any harm. The first try fails. Meets resistance a short way down, which is not supposed to happen, but it does sometimes. Missus backs it out and begins again. Lucy gets fidgety. We find a pacifier, her “nibble” as Middle calls it. Missus begins again, starts it down and Lucy starts to fuss, which is still a rare occurrence and puts us on edge some. At this exact moment, Middle plunges her head directly between Missus’ face and Lucy’s face and abruptly shouts “Whatcha doin!?”

This is her sense of humor, age 5. Although the comedic timing is perfect and not lost on us, we are startled and not at all amused. I command her away from the bed invoking a loud Angry Daddy voice and she slinks away, hurt but also mad that we’re mad, because she sees the flash in her Mommy’s eyes also. She folds her arms and huffs something about Lucy. How it’s always about Lucy. She might’ve lobbed an H-Bomb over in baby sister’s direction.

Missus very deliberately reminds Middle, eyeball-to-eyeball, in ascending volume: “THIS – is how – she gets — FOOD!” It ends on a forceful note. Not very characteristic, and now Middle has received one-two punch from both of us. Not a great moment in Zen Parenting. All we’ve accomplished is making all three of us feel instantly terrible. We more softly apologized to Middle, carfully explained exactly what was happening. We gave her the task of singing a song to Lucy and holding her pacifier in place while mommy put her tube in and things got better after that. Much better.

 

The Gravity Method

Among the most stressful moments that I can recall from this time period, I count one very typical late-night/early morning feeding as we were still getting settled in at home.

In these days, the simple act of feeding Lucy is an exercise in next level multi-tasking. At least in our case it was, because we had adopted the time saving habit of tube feeding Lucy while she worked on her bottle-feeding. She took in very little by bottle but we were convinced that at every single feeding Lucy needed to bottle feed to the extent that she could or would, to build her feeding stamina.

Usually she would pull hard and fast for about ten to fifteen seconds and then take a little breather. Then she might pull hard and fast again for a series, and then usually she was done taking milk but might mouth or work the nipple sort of like a pacifier on and off for about ten to fifteen minutes. Then she would refuse that and want the pacifier.

She would take such a small amount of milk by bottle that it took close to forty minutes to run all of the thick, high-calorie formula through her feeding tube. So, rather than wait the ten or fifteen minutes for her to tire of her bottle, bringing feeds to an hour each, we would typically start the tube feed

(With a brief, partial plunge to start the milk down the tube, you then remove the plunger entirely and leave the syringe open-ended. The milk drips slowly and imperceptibly from the two pinhole outlets at the end of the feeding tube and into Lucy’s stomach while your static, upright arm becomes an I.V. rack. This is called “the gravity method”)

and then feed Lucy by bottle with the other hand simultaneously.

Looking back, I’m not sure the sky would have fallen if we had altogether forgone bottle-feeding at night and just worked on it in the daytime. In fact, this is exactly what would happen in time, as Lucy’s interest in bottle-feeding dwindled to nil in spite of all our efforts. But for now, we were all-in, trying to do right and save a little time in the process.

Back to my story: As Missus lowered Lucy down into her feeding nest on my lap one late night/early morning, I squirmed in a narrow glider with an awkward pillow around my middle and was trying to set Lucy’s head just so in the crook of my arm. With one hand I was fitting the tip of the syringe to the end of the feeding tube, preparing to fill it and begin the slow plunge. With the other hand I was trying to find and hold both the bottle and the pacifier and situate both Lucy and my own person in a manner we could both tolerate for close to an hour. At about the moment I realized that I was out of limbs and hands and that none more were growing out of my chest, something pitiful welled up in me and whined, a little too loudly, “GOD this is stressful.”

I myself know how pitiful I sounded because I heard myself, and the way that the words left me. Missus, who had even been helping me, nearly didn’t go back to bed, offering to stay and feed Lucy instead. This only reaffirmed that I sounded as pathetic to her as I thought I did. Determined to take my turn, though, I promised her that we were okay and tried to act stoic and manly again.

Why I went all Big Baby in front of my wife while simply preparing – with her help — to feed our third born is something I still don’t understand, and that I’m hardly proud of. One theory goes that while Lucy was in the NICU, we had become expert at the task of feeding her. In the daytime. As a team. There, in the pitch-perfect, white light of day and in the controlled setting of the hospital room, we were a fluid machine of teamwork and economy.

At three a.m., in our own dimly lit nursery and with sleep heavy in our heads: Different story. We were first-timers all over again, with a fresh set of feeding obstacles besides. And not exactly spring chickens in our late thirties, it might be noted. The older you get, the more that graveyard shift hurts. And the more you might feel it when you’re smacked heartily back down to earth by your own self-restored humility.

TWO

Neither Here Nor There

Funny how soon you can stop being thankful and begin thinking petulant thoughts. For in fact there was at least one festering in our shared minds. Mine much more than Missus’, I’d say. It had come on maybe halfway into our NICU stay and would sort of manifest itself in an on again/off again kind of way for a long while.

Missus is, has always been, an elementary school Art Education teacher. She has been at it for fifteen years now, and with the exception of one, brief part-time stint after Middle was born, she has always worked full-time. She has always been content in her career, has never voiced any desire for a different life. There was never even a conversation, in fact, when we began having kids, of whether she would rather stay at home or continue working. It just seemed normal. Two incomes are better than one.

Lucy’s delivery date had come better than we could have planned it, leaving a perfect window of the remaining school year that enabled Missus to max out her maternity leave and not return to work before the summer came on. It was going to be six weeks worth of quiet mornings and afternoons with Lucy while the girls were away in school. It was going to be her first true stay-at-home mom experience: Get up, dress, feed and see the girls off. Then it’s just mommy and baby. Coffee. GMA, Kelly and Michael. Snuggling. Do some laundry. Make some lunches. Change some diapers. Stroller excursions. Lunch with friends. Cuddle and doddle and craft. Welcome the girls home from school, listen about their day. Life as it should be.

But the entire time we were grinding it out at the hospital, Missus’ precious maternity leave had been burning away, cheating her out of precious quiet hours at home alone with her new baby in that new and pristine, waiting nursery – our first, true nursery. She had about two weeks of this before school let out and the house became a hive again with the girls home in the daytime. She was blessed to have that time, very much granted. We are both very blessed in our work lives.

Still, while Missus would never voice any disappointment over something so petty as not having enough paid Me time, I was more than glad to feel it for her. I took it personally, and it was not about Lucy. And it was not about the girls. It was a me thing. A sore spot sitting squarely atop a bigger, underlying sentiment that I couldn’t yet identify, but would. Later.

 

Getting the Go-ahead

We took our family vacation that summer, as planned, but only after conferring over and over again with Lucy’s doctors that this would be acceptable. We left six weeks after bringing Lucy home and it only worked because we are not exciting when we vacation. We kind of just pick up and go do life somewhere else for a while. We’re not that family trying to hike all the trails and climb every fourteener in Colorado.

Still, we needed to hear from Lucy’s doctors, independently of one another, that taking her away from them, far from her hospitals and well away from their circle of protection, would be okay. We felt guilty for even asking the question, as if they would wonder to themselves Isn’t being home enough for these people? Is this really the time for a vacation, guy? And perhaps the guilt was real in our hearts. It was a little difficult to know exactly what we should be feeling about our new reality at home. Life as usual or life as new? Did we have a sick baby who was no longer as sick, or a healthy baby we needed to guard as sick while the ticking clock did its work bringing nearer the date of her surgery? Should we have been merely grateful to have gotten her home at long last, or was it unreasonable to think that an extended getaway was not only in order but deserved?

When finally we got the nerve to ask, the talks with Lucy’s doctors all trended similarly, with the exception of the youngest cardiologist who snorted — either kindly or smugly, it was hard to tell which — “Everybody asks this.” One of the conversations can be synopsized this way:

They would ask if we were going on an airplane. No. That’s good (newborns and germs and all). So just car travel? Yes. How far away are you going? Colorado. It’s about fourteen hours by car. That’s good. About one day of travel is acceptable. But what about the altitude? What’s the altitude like there? Will you be near a city or up in the mountains? A city, Colorado Springs, but the altitude is around six thousand feet. Do they have babies there? Well yeah… Hospitals, doctors? Of course… Ones that see babies?

We were getting the point. It began to feel like being cajoled by a kind and quiet favorite family uncle. Still, all of these points established and accepted, I had a bigger query behind these that I knew would prove this line of questioning hugely more relevant. A game changer.

The summer of 2012 happened to host what is known as the Waldo Canyon fire, which burned nearly 350 homes and almost 20,000 acres of Front Range forestry. It came within a mile of my small hometown and ravaged northwestern Colorado Springs. For nearly a year this was the most destructive wildfire in Colorado history (the much more destructive Black Forest fire came the following summer affecting nearly the same region). The Waldo Canyon fire began just two weeks before our vacation timeframe began, and we knew that containment efforts would still be going on by the time we got there. If we got there. We knew that a haze of smoke would be omnipresent in the area we were headed for and I felt sure that this would cause Lucy’s cardiologist to pump the brakes on our plans, if not halt them altogether. So I explain all of this to him, and wait for it.

The doctor listened, nodding pensively with lips pursed, his gaze fixed upon some section of linoleum a distance away. With his arms folded, he at last solemnly looked up from his study of the situation as I explained it. When he offered his council it came in the form of a question: “Are you going to be taking Lucy — into — the fires?”

Fair enough. We didn’t know what we were needing to hear, but this was it. A little simple sarcasm to bring us back to zero and ground us to the fact that Lucy is and could be regarded as a normal healthy baby. One that takes Lasics and blood pressure medicine twice a day and gets food through her nose, granted, but not a bubble baby. We smile and breathe easier. We see things as they are now.

 

 

THREE

Home Health

Presently, Lucy sees two home health visitors per week: Her speech therapist and her physical therapist. They work for an Austin-based company that specializes in pediatric in-home therapy for kiddos that have disabilities and special needs and we couldn’t be happier with them.

These are amazingly sweet, bright people who’ve worked hard through competitive grad-school programs to receive sought-after jobs, and who are great at what they do. They’re motivated professionals that form and cultivate relationships, establish trust with children and parents alike, and they have an honest passion for serving children with disabilities.

I could go on and on about them. They’ve been with us for over a year. But this is our second experience with the world of home health providers, which we’ve learned is not one world. The difference between our first experience and this one, in fact, couldn’t have been more night and day.

_____

At some point toward the tail end of our stay in the NICU, as we were being readied for discharge, we were asked if we wanted to be contacted by home health. We said Sure. At that point, blinded by the lights of home, we wouldn’t have said No to anything. We didn’t ask a lot of questions and the nurse didn’t volunteer a lot of information. It seemed pretty standard. We guessed this was the natural course for people in our situation. We had a special needs baby who had feeding problems and needed to keep gaining weight and who had a heart surgery on the horizon.

Since Lucy’s birth, our lives had been owned by the scale; by the capnographer; by the oxygen sensor; by the monitor. We had none of these at home. It would be a good thing for someone to come by every so often for weight checks, well checks and so forth, just so we knew nothing was sneaking past us. The more eyes on her the better. And to not have to drive to a hospital or office somewhere? Once we affirmed that the visits would be covered entirely by medical insurance we gave them the go ahead to sign us on.

At my grouchiest, our first home health experience can be summarized this way: After a few phone calls, an in-home assessment was conducted and Lucy became a patient of this provider. Before we knew it our infant child had been “approved” for several visits per week ranging from weight checks to speech therapy. Upon learning how frequently our “guests” would be popping in (average visit duration 45min-1hr), I remember commenting to Missus that it was going to feel like being looked in on by CPS three times a week. I was not far off.

Most of these appointments were inane maneuvers in going-through-the-motions. Many times it seemed like the person was only there to operate the computer tablet that was obviously driving the session. I felt positive that Lucy was too small, still too baby to benefit from anything that they could do and that our time was being wasted. Then I’d tell myself that I was probably just being grumpy about it all and that I’d better just keep my mouth shut and let them do their jobs. But it was hard.

Our house had become a revolving door to well-meaning strangers who would come and stand in our living room and tell us things that we already knew. Things that any engaged, self-respecting, non-mouth-breathing parent already knew. We were being seen by a spectrum of humanity ranging from well-schooled licensed therapists to people who seemed to have little education but could call themselves nurses. We were literally told by one unkempt individual about the importance of “tummy time,” as if it were a radical new concept in infant physical development that we needed to be made aware of.

I winced at this and my eyes spun backward in my head while I began forming the notion that we had been farmed out by our hospital and fed to some system that preys on either the ignorant or the scared shitless or both and that, in the undertaking, Lucy had become a little money train for a vast medical conglomerate. One that had now been given a carte blanch mandate with which they could prolifically bill our giant, faceless health insurance company.

What we did not know, and what would become oh-so clear by contrast in time, was that the home health provider we were referred to by the nurse at St. Elsewhere did not specialize in pediatric patients. They were a large, general provider based in San Antonio that saw pediatric patients along with all their others, which we venture to guess were overwhelmingly geriatric. The whole frustrating experience can be distilled down to a bad referral. Thanks again, St. Elsewhere.

_____

When we left town that summer, we were gone just long enough that Lucy’s provider had to discharge her from their care, per their protocol. When we returned home and brought Lucy in to see her pediatrician for a weight check, we asked if he thought it was necessary to go through all of that again.

We talked about it some and finally he shrugged and said that there probably was no reason to, at least not until later. A kind of huge validation came out of this conversation, though, when Roger, our pediatrician (who happens to be a relative) basically echoed my original, grumpy sentiment about the entire business, implying that she, Lucy, was probably still too small for any of that. Why not let her get a little bigger and then resume — after she’s recovered from the surgery? I mean — Physical therapy? Speech therapy? She was, after all, just a tiny baby.

I nodded my head, squinting a little, trying my best to appear at once cerebral and in full agreement that this course seemed to be the most logical, but in my head I was screaming, “I KNOW, RIGHT?!!

It was another reminder that it’s okay to trust your gut sometimes.

 

The Fear of Children

On a select few occasions in this interim between the NICU and the surgery, I would need to reach and grab my flopping fish of a heart out of the air and ram it back home, it having abruptly launched itself from my chest cavity and out through my throat. Partly responsible for one of these episodes was a new problem we were working through that, for some reason, hadn’t manifested in the hospital setting. That would be the puking.

It had become an unfortunate regular occurrence, plaguing us for the first handful of weeks: At least once a day, Lucy’s newly ingested milk, sometimes fresh down her tube, would find its way back up through her esophagus and spill out down her neck and onto her onesie. These episodes almost unfailingly coincided with her bowel movements, so we were baffled as to how to control this, and whether it could even be controlled. We wondered if it was owed to a separate, gastrointestinal problem that would require surgery. We wondered if she could gain consistent weight with so much milk regularly leaving her, those precious calories ending up in the washing machine. More layers to the worry we were already wearing on our shoulders.

Sometimes, if it’d been a while since the last feeding, it was just a little bit of spittle that could be blotted away with a burp cloth (there is really no burping a tube fed baby, as no air accumulates in her tummy). Other times the entire contents of her stomach would empty onto the front and back of her in one prolific low-pressure surge, accompanied however briefly by the wet sound of a burbling brook. Sometimes there were bouts of gurgling and coughing that were over as quickly as they’d begun. And still other times there were gagging fits that bordered on traumatic.

Missus began to wonder if the issue was caused by the thickness of Lucy’s high calorie formula, and time would prove her right — things slowly corrected themselves as the doctors backed her calorie mixture down incrementally. But not before we were reminded that that awful fear you think lives only in the hearts of children and horror movie scream queens did, indeed, still live in our own.

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I am standing somewhere in our dining room trying to decide between sandwiches or sleep. This is less than two weeks after bringing Lucy home. Everything still feels a little new. We are still getting our bearings and are also becoming slowly aware of this puking thing. The girls are in school and the house is dead quiet when, from somewhere upstairs, the sound of Missus’ terror-stricken scream srikes my ears like an ice pick and shoots down my spine. Her normally thin voice shrieks my name in a volume and register that I’ve not heard before and the next moment I’m in our entryway vaulting over the hand rail, instantly halfway up the stairs. (I’m not actually sure that I vaulted anything, but I have no recollection of starting at the bottom, or my feet making contact with the stairs underneath me for that matter.)

I’m readying myself for back blows, between the shoulder blades using ample force, Lucy’s face in the palm of my hand, her body longwise atop my forearm. I’m thinking rescue breathing: My mouth covering her mouth and nose, two small, one second puffs, looking for chest rise and fall. That’s as far as I get.

I’m aware of my heart beating in time with speed metal and I’m using my hands to pivot me around and past doorways as I hurl myself into the nursery. Missus is standing with her in her arms down in front of her, breathing fast, examining her. Everything appears to be okay. Lucy’s color is good, she’s not in distress. Missus’ own distress is already in waning. It was a particularly bad gagging fit, and yet practically over before I got there. There is formula on Missus’s shirt and on the floor. Lucy will need to be changed.

“I’m sorry,” she breathed, achingly. “ She was just- I thought she was choking. It seemed like she wasn’t breathing. For forever.” I put my arm around Missus and we share a long, exasperated sigh. We stand shoulder to shoulder like this for a while, my hand gliding up and down her arm. My head tilted over, resting on her head. Admiring our brand new baby girl. Our fine work. Neither of us will resume anything resembling a resting heart rate for the remainder of the afternoon. It’s all right.

_____

The next day. I’m laying on our bed in the late afternoon, quite content in the no man’s land that separates us from full consciousness and the early stages of sleep. But there will be no napping today.

Jarring me out of the land of Nod is an equally horrific and wall reverberating death cry, an encore of yesterday’s shriek without my name attached to it, and undiluted by traveling distance. Missus and Lucy are one room away, only ten feet and two thin sheets of drywall separating me from the unthinkable. Before my feet hit the floor I’m thinking heart failure. Lay her on a flat surface, check for pulses. 911. My hands encircling her tiny rib cage, both thumbs on her lower sternum. Five compressions, an inch-and-a-half deep. One rescue breath. Repeat. That’s as far as I get.

I sling myself around and through the door jamb and the first thing I see are the whites of Missus’ eyes as she sits frozen and bolted upright in her glider holding Lucy.

“Sorry,” she heaves.

“ A roach. It came out of the chair. Right here.”

She cuts her eyes toward a crevasse down right beside her leg. She was wearing shorts.

“And then it went over there.” She nods toward the book shelf and then, seeing the confused panic on my face, offers all she can by way of apology.

“ Sorry. So, So, Sorry.”

We bought that chair used, off Craigslist. Evidently it had been harboring foes — a checked white and mint green Trojan horse, made by Pottery Barn. I hated it as soon as we got it home and I still hate it. It was uncomfortable. It’s sitting in our garage right now.

 

 

FOUR

photo-22

Sisters

I once asked Oldest what she remembered about the day Lucy was born. She was nine then.

She told me about hitting wiffle balls in the backyard that morning, and she took me through the places that they all went while killing time before getting to the hospital: An antique store in my father’s home town that used to be a movie theatre. His favorite barbeque place for lunch; some sightseeing in the country, I think.

Then she told me about being in the waiting room with everyone and watching my mother peering through the windows of the doorway to the women’s wing, and everyone laughing about that. Occasionally, she would slip past and sneak down the hall for an even closer look. It’s possible my mother would have made a formidable investigative reporter.

Eventually word came that Lucy had been born and there was more smiling, more nervous, eager chatter. Some giddy, silent clapping. Oldest said she was excited about getting her turn to go see mommy and the new baby and getting to hold her. The next thing she knew people weren’t smiling any more. Some of them were wiping away tears.

I had come out to the waiting room again just after our conference with the NICU Doc. I gathered us up and we stood in a wide circle, hands-on-shoulders, while I did my best to tell everyone what the doctor had just told us. I tried allowing only the minimum aspect of surprise and fear to register on my face and in my voice. I felt like I was doing well, but the moment was grave and surreal at the mere mention of heart trouble.

Oldest doesn’t remember what was being said. She mainly remembers wondering why people looked like they were crying when this day — the day we’d all been waiting for and talking about for so long – was supposed to be happy. I honestly don’t remember making eye contact with my children in this moment. They came into the delivery room soon after and got to have their turns kissing and touching Lucy and having their pictures taken with her and their mommy. It was very special, just like you expect it to be. They were tender and sweet with her, and so excited to feel her tiny feet and kiss her on her head.

They didn’t know anything, then, about Down syndrome, or about what our fears were for Lucy and her sick heart. It would be several days before we got into that with them. They didn’t ask questions about her. Why she was hooked to this or to that. But as they glowed over her and basked in the excitement and the newness happening in their lives, it seemed plain to us by their faces and by their movements that both of the girls understood that there was something about their baby sister that we would discuss another time. Something about her that was very – important.

_____

Lucy is adored by both of her big sisters, now ages eleven and seven. Sometimes they argue over who should get to have Lucy in their lap while they watch t.v. on the couch. Sometimes they need to be reminded to get on the floor and play with their baby sister a little bit.

At this writing, Lucy will be two in a handful of days. She’s not a walker yet, but spends more and more time on her feet, finding her bearings. We’re working on it. She’s walked as far as ten feet on her own. Primarily, though, she’s a butt-scootcher, and she will be a while longer. She sits upright and kicks her legs out straight in front of her and then pulls her heels back into her and scoots anywhere she wants to at a deceiving clip, about a foot at a time. If she wants to really turn on the jets, she leans forward and goes into a sort of modified bear crawl.

Sometimes we have dance parties. We’ve learned that this is as good as therapy gets for Lucy. She’ll stay on her feet longer with the music playing and watching all of us generally act weird. When she sits back down she immediately, usually, gets back up to join in again. When she gets tired she’ll sit and watch us. Her floor dance is to raise both arms up above her head and maybe swing them into different poses while she wiggles her butt, her little almond-shaped tummy squirming side to side.

She’s at her best when her sisters cheer her on. She stands and sits back down and claps. They clap and cheer. She stands again and sits back down, pleased with herself — beside herself — and claps some more. And they cheer and clap. She laughs loudly. She stands again and takes a few steps, laughing, and sits back down and claps and rocks and cheers because the excitement in the room is too much. Too happy. She knows nothing else to do.

 

Lucy, Lucy, Lucy

Being able to watch Lucy’s acceptance into our pack has been heart warming, certainly. This is not to say that there were not a few growing pains as our family dynamic went topsy-turvy for a time in the strange ways that it will when adding to your brood. It was a new day, for sure.

Oldest (nine at the time) needed to be reminded frequently that her job was simply to be a good helper and a Big Sister — not Mommy Lite. Middle children at some point will cease to be the youngest, and we watched Middle struggle to assume her new role as No Longer the Baby.

On a simple turn about our neighborhood loop one day, Lucy and Middle and me, I was pushing the stroller on a cool morning with Middle beside me; just out walking with the new baby and talking with my pal.

We’d once had a pretty fun routine on my days off. This day, I’d kept Middle home from pre-K for whatever reason, maybe just because I could, and so it sort of felt like old times. I was humming a simple old folksy tune that I often intone around the house, and that I’ve never known the words to. I make them up. At the right time I’ll insert the kids’ names into the made up song’s made up lyrics. I’d done this nearly a million times before with the other girls, only this time I’d used Lucy’s name. Hearing this, Middle remarked:

“That used to be me. Now it’s just Lucy, Lucy, Lucy.”

Her tone wasn’t pitiful as she said this. And she didn’t appear downcast or somber — sort of: Just Saying.

Still, it got me a little.

 

The Knack

Oldest has always had the knack. When Lucy first began to giggle it was Missus leaning over her on our bed, kind of working her all over with a busy pair of pinchers, making small little noises in kind. This is what I’m told. I didn’t hear a laugh or a giggle in any form until a month or so after Missus first reported this new trick, which she could not replicate in my presence. I, of course, did my natural duty in dismissing the claim as hogwash.

It wasn’t, though, and in another month or two even I couldn’t deny that the girl had a giggle. A great one. Could her father extract these tiny fits of internal glee from her? No. Of course not. Could her mother? Certainly. At times. Middle? Not so much.

Oldest, however, had been awarded free reign over her baby sister’s newest form of affection. All she had to do was lay Lucy on her lap and go in for an Eskimo. Well before they’d kiss noses, Oldest’s hair would be falling down around the baby’s face and Lucy would be emitting these abrupt, semi-automatic, single-syllable outbursts of jubilation that she seemed to neither have nor want control over.

You could just hold Lucy up to her briefly, and then again, over and over –peek-a-boo like — and a short laughing fit would ensue every time. Not so with the rest of us. Only Oldest. We could only smile and laugh along and pout with our arms folded and with false frowns that it wasn’t fair only she got this kind of treatment. And then we’d have her to do it again. And then again.

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After much earnest pestering for a job title, Middle was awarded the task and title of diaper getter. At the opportune moments, she would open the top drawer of her baby sister’s changing table to withdraw the solitary fresh diaper. This she would lay at Lucy’s feet before extracting two or three wet tissues from a plastic tub. These she would place handily aside for the convenience of whomever happened to be conducting the main business.

To our mild surprise, she did not tire or quickly lose interest in her new charge, which she continued to execute piously for weeks. Contrarily, whenever one of us would mindlessly open the drawer and grab one out (Middle, without our knowledge, only a few small steps behind), we would be solemnly reprimanded by one very chagrined Big Sister, her small sweet face at once vexed and wounded-looking.

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A now favorite memory of mine came the very first morning that Lucy woke in our home.

She slept mute in her nursery, adjacent to our bedroom, and the girls had joined Missus and me in our bed that morning, separately, wordlessly, as they are given to doing. We lay there four across for a time, alternately snuggling and dozing. The first words spoken that day were by Oldest who, when she perceived that we were waking for good, softly and carefully worded the question of whether or not she could go in — and look — at Lucy.

Of course, you can do nothing but smile and nod at such sweet stuff and off she went, quiet as Christmas morning. Missus and I exchanged sleepy grins as she gingerly opened the door and silently tiptoed in. Soon Middle was there beside her, standing on a chair, and both stood with wide arcing smiles, giddily but quietly cooing, oohing and awe-ing over the oblivious sleeping child.

It does do something for the heart — watching siblings become sisters.

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