Maternal Dementia

She changed into her pajamas in the living room, doing a funny kind of half-dressed jig to entertain us, happy to laugh and happy that we were laughing with her. I said something that made her run away from us – a pretend threat to pinch her, or a comment about her lack of underwear. She turned too quickly and stubbed her toe on the base of the couch. (We are at our country house, where there’s a sagging, old futon with odd parts of metal protruding from the bottom.) She shrieked and exploded into tears.

De-facto and I remained seated at the table. It’s not that we are insensitive, but early on we agreed to be the parents that wait a beat (or two) before coddling our children after they have hurt themselves, reserving our rushing-over-to-console-efforts for those boo-boos that actually merit such earnest concern. We were, perhaps, too cavalier about this when Short-pants was a little toddler. She’d tumble and we’d quickly suggest to her, “you’re okay!” Later we came to understand that she thought “you’re okay,” meant “ouch, it hurts!” After a fall, she’d jump around, in obvious pain, shouting, “I’m okay! I’m okay!”

She sat on the couch and screamed again, her face in a grimace, red with tears. “I’m always hurting myself!” she cried.

Short-pants does stumble a lot. She trips and falls more frequently that most children her age – and I know that 8-year olds can trip and fall a lot – but she is constantly nursing a hurt toe, foot or knee. She moves with short, jerky motions, especially when she is excited, which often causes her to bump into something and bang or bruise one of her appendages.

Part of this is related to a broken leg at age 4 that was, unfortunately, set incorrectly, a fracture which, though we’ll never be sure, we believe is related to her brain abscess. She had just learned to walk again after a coma and two brain surgeries and six motionless weeks in a hospital bed. She overestimated her strength while hanging on a bar in the park, fell on her leg and broke it, after which she spent eight weeks in a cast and then had to learn how to walk again. Except after the cast came off, the leg was longer and slightly turned. This would set anyone back a bit, let alone someone with a little neurological story like hers.

We were diligent about physical therapy, until one day it felt like she spent too much time going to medical appointments and that maybe the best therapy for her was to just be a playful kid. The French doctors all agreed, a bit too readily, “Her legs will even out, you’ll see, pendant la croissance.” During the growth. I could tell they were mocking my concern – I was one of those obsessive (American) mothers and if I’d just relax it would all be fine.

This is the line we walk – all mothers, not just mothers who’ve been hospital mothers – the fine line between advocating for your child and obsessing over her. I don’t want to hover and try to direct everything in her life. But to what degree is my role as parent to make sure she has the best care possible and that we’ve done everything we can to help her? It’s not that she has to have perfect legs and run like a gazelle and win every race. I just want her to be able to move comfortably and do the things she wants to do. And when she’s an old bat, I don’t want her to be in pain because her pelvis and back are all messed up because her leg was never attended to.

We’ve waited a few years, and the croissance is indeed happening, in amazing spurts, but her leg is still longer and it’s still crooked. She’s not really getting stronger or more coordinated. If anything, she’s discovering that she’s not as swift or steady as her school friends, and starting to shy away from physical activities where she knows this will be apparent. We try to encourage her, with modest success (De-facto has her playing basketball and the practice is helping) but we don’t want to nag her and make it larger issue than it already is.

A few weeks ago, I decided it was time for an expert opinion, so I returned to one of the PTs who’d worked with her before. He was terrific – said all the right things to her about finding a physical activity she loves and practicing and working at it. He gave me that look that said I know you want me to fix this and I can’t, but she can, if she works at it. He gave us some exercises to do together, but of course, I haven’t been so diligent about it. I’ve not been very diligent about my pilates, either. It probably doesn’t help that her mother is much better at laying in bed and reading than running laps at the basketball court.

I looked at De-facto. “I wish I knew what to do to help her move more fluidly,” I said.

“She’s missing a little part of her brain,” he whispered back. “She’s a miracle, remember?”

I do remember those awful days when Short-pants was in a coma, when all I wanted her to do was survive. I bargained with someone above to keep her with us in any condition. A funky leg that makes her a bit uncoordinated and a left side that isn’t as strong as her right side? No problem, we’ll take it. Just give her back to us. That’s what I would have said. More or less, it’s what I did say.

Short-pants hobbled over to the table and folded herself in her father’s lap. I listened to him talking to her in his low, soft, reassuring voice. He explained it all to her, how maybe she falls and trips a lot because of the operation on her brain, and how it takes her a bit longer to learn to do physical things. He put all those big-person concepts into littler-person words so she could understand. And maybe, he said, it all had to do with the thing that was in her brain, but maybe not, we’ll never know for sure, but what we do know is she can do anything she wants to do, just sometimes she has to work longer to get her body to learn how to do it.

He always knows the right way to frame things for the girls, to tell them the truth without talking down to them or being patronizing. He’s the best explainer there is.

Short-pants rested in his arms, taking in all he said. I watched from across the table, admiring the two of them in their embrace. Then she pushed herself up, out of his lap and limped around the table to me and curled her lanky legs up in my lap.

“Don’t worry, mama,” she said, “I’m okay.”

Once triggered, a strong memory can hover. It stays close to the surface, stretching its legs after being folded into the recesses of the past, aching to be a story that’s told again. Just a week ago I wrote a few paragraphs about a gripping period in our life, five years ago, when Short-pants had a medical crisis. I don’t mean to dwell on it, but it comes to mind again this week, with good reason.

It’s a story we try to tell enough so Short-pants can own it without shame. It’s a story we try not to tell too much, so it doesn’t become the dominant story of her life. Sometimes, when I visit her room to adjust her bedcovers while she sleeps, I trace my finger along the arced scar that crowns her head. I once told her it was a permanent tiara. I’ve heard her repeat the phrase with pride. That’s the thing about a scar; it’s a story you get to tell for the rest of your life.

Short-pants’ six-week stint in the neurosurgery ward started before Thanksgiving and spanned the holiday season. I was prepared to throw in the towel on Christmas; I had no energy to shop, decorate or enact the role of Mère Noël. But friends and family pressed the spirit of Christmas upon us. They sent gifts for the girls, optimistic that Short-pants would survive, determined that Buddy-roo wouldn’t go without the full-on holiday fuss. Our neighbors surprised us with a 6-foot Christmas pine. And there were angels – so many people sent angels. We must have received five or six hanging angel ornaments for our tree.

One angel in particular was – and still is – my favorite. It was a gift from one of De-facto’s aunts, a woman who sets a classy standard for the family, a woman who has navigated the burdens of her life with tremendous grace. The ornament is made of silver. It’s heavy in your hand, and when hung by its lace loop, pulls the bow of the tree low toward the ground. There are words engraved on one of the wings:

You must do the thing you think you cannot do. – Eleanor Roosevelt

About the time this silver angel arrived, I was at a wall. It wasn’t much fun, being a hospital mom. Every day, punching the intercom buzzer to be let in to the ICU, sitting at Short-pants’ side, worrying and wondering while trying to assure her and give her hope. At the same time staying alert to the nuances of the doctor’s throw-away comments, hounding them down to find out what and why and when. I went to the hospital every day; De-facto and I took shifts, morning and afternoon, overlapping a few hours mid-day to be there with her together. By the time Christmas was near, I was completely spent.

I remember opening the box and rubbing my fingers along the wings of the angel, touching the words, as though I might be able to physically absorb them. Isn’t it perfect how the universe knows when you’re desperate and sends you exactly the message you need to hear? I will always cherish this angel. I have a little moment with her every Christmas; I have not yet succeeded to place her on the tree without weeping.

My mother had planned to spend the holiday with us that year, so she came as scheduled, bewildered at first about how to help, but then finding her way, baking Christmas cookies, doting on Buddy-roo. The hospital was very strict about “parents only” in the ICU. Whenever friends came to support us there, they were obliged to do so from the waiting room. But on Christmas day, one of the more compassionate doctors had a word with the nurses on duty, and an exception was made.

So there was my mother sitting on one side of the hospital bed, me on the other. She reached across Short-pants’ sleeping body and rested her hand on mine. I had grown accustomed to seeing my 3-year old daughter tucked tight under the blanket, emaciated, listless, with a helmet of gauze wrapping on her head. I was used to the machines and sensors and tubes. For my mother, it was startling and disturbing. “I just don’t know how you do this every day,” she said.

I can count on one hand the times I’ve seen my mother cry. She sat across from me, wet-eyed, pained to see what we were enduring each day. “Somehow, you just do it,” I told her, “you do the thing you think you cannot do.”

These days Short-pants is fully recovered from that grim experience, immersed in her vibrant life, sometimes in the clouds, but with a well functioning intellect and imagination and a healthy emotional intelligence. My mother has relished the opportunity to watch her grow into the soulful young person that she has become.

But now I’m sitting by another hospital bed, the one that’s been set up in the study of my mother’s house, the bed in which she will be spending her last days. After a valiant contest with leukemia, an opponent that she held at bay for much longer than anyone – especially her doctors – expected, she is letting go. She will take no more treatments, no more blood transfusions. She has decided to let her life run its course.

This is hard. It’s hard to say goodbye, it’s hard to see her suffer. But I know what I must do. I will sit beside her. I will hold her hand. I will squeeze it so she knows I am there. I will hold it the way she has always held mine. I will do that thing – if I must – the thing I think I cannot do.

When Short-pants was just a little girl, she had a big story with menacing words like convulsion, coma, and emergency surgery. A massive growth in the right frontal lobe of her brain was originally diagnosed as cancer, but post-surgery lab tests gave us a break; it was just a brain abscess. Still, there were complications: a secondary infection, meningitis and persistent vomiting as a result of the nasty cocktail of intravenous antibiotics that didn’t seem to be shrinking the abscess as predicted. The MRI made it look as if it was re-forming, like the image of a hurricane gaining speed and force on a tropical weather map. A second brain operation was required to remove the abscess for good.

All hands were on deck. De-facto’s family appeared en masse and quietly took over our home, attending to Buddy-roo, organizing our lives, making sure we ate meals of substance and nourishment. My brother the doctor was on call every night to interpret the medical-speak we encountered each day. My sister, who happened to be in Viet Nam at the time, managed to inspire the Archbishop of Hanoi to put his priests to work in prayer. An e-mail tree was established; we wrote a message every night that was sent out to a few people, who sent it to other people, who sent it to more people, until a web of friends and family had the latest news about Short-pants and put us in their prayers.

We were in crisis mode. We didn’t hesitate to ask for help, and people didn’t hesitate to offer it. Perfect strangers came to our emotional and spiritual aide. Doctors who were friends of friends reviewed her dossier and offered additional opinions. We accepted anything that was given to us, without quid pro quo worries.

As awful as it was, fathoming what life would be like if she didn’t survive, or what it would be like if she did survive but with serious complications, there was also something really simplifying about it all. De-facto and I had a crystal clear sense of purpose every day: to give emotional support to our daughter, to do the medical interface, advocate for her care and to try to hold each other – and our family – together.

A crisis can produce this kind of clarity. We do what needs to be done. We make quiches, soups and casseroles. We bring blankets, we send money. Priorities become certain, we function in highly effective ways despite the lack of sleep, loss of appetite, and moments of extreme despair.

In other words, we rally.

The nightly e-mail network we branched together pales in comparison to the force and velocity of information sharing that exists today. The brute force of the Internet is staggering: a well-loved blogger has a stroke, an entire on-line community assembles to support her family, not only with words, but with money and real-time assistance. When an amazing child whom everyone read rooted for doesn’t make it, there’s an outpouring of financial and moral support from an electronically connected community. An earthquake devastates an entire country and the world rallies to offer aide. It all makes you feel good about what human beings can do.

After Short-pants was released from the hospital and well into her rehabilitation, people started to forget about our family crisis. The urgency of our news diminished; without a daily calamity to report, our update messages went from daily to weekly to monthly to rarely. Everyone returned to their regularly scheduled life, and assumed that we had, too.

Except our life was still upside-down. We were thrilled that she was home, but schlepping out to the rehab hospital three or four times a week, juggling doctor’s visits and follow-up tests as we tried to recapture our own professional schedules was wearing us out. Being careful about keeping a steady stream of attention on Buddy-roo in the midst of all this took energy, too. This was when I was most afraid that I might break down. Not in the thick of the crisis, when everyone was cradling us, when there was clarity and singularity of purpose. It was just as hard – and I had less personal stamina – when we were “out of the woods.” The crisis was over, but our lives were still far from normal.

The awkward memory of this après-crisis phenomenon was prompted by reading one of the blogs in my sidebar, Generation Y, written by a Cuban woman who has to work miracles just to get her posts on the Internet without being censored. She writes, “It especially frightens me that three months from now the suffering will no longer be a headline in any newspaper and people will have ceased to feel the urgency of the Haitian drama.” I’ve thought about that, too. We send our money and we go on about our life. What else can we do?

But I’m getting ahead of myself. The crisis in Haiti is still full-throttle, and will be for some time. Help is needed now. If you haven’t donated, here are some reputable aide organizations. (I donated here.) Or if you’re in the States, all it takes is a single text message. If you blog, here’s another creative way to raise funds. Sending $10 – the cost of two draught beers at my favorite café – will make a difference, when you consider how many millions of people are donating just that. It adds up, fast.

Just remember that the crisis may end for us when the media coverage dies down, but not for them. Whether it’s for Haiti or any other cause – the charity of your choice, or the friend across town who’s grandmother just died – it’s so important to follow up and check back in. Maybe it’s another donation, another mention, another offer to help – even just a quick hello that says you haven’t forgotten – that could mean more than we know.

Well, in fact, I know. It means everything.