Surprise!

Nine years ago this week, our family was in shock, facing down a future we couldn’t imagine or understand. Nine years ago we gazed into those beautiful almond eyes for the first time and could only see a troubled future for our precious, beautiful baby girl.

It was Margot herself who taught us to hope again. Her determination, her infectious smile, her sly, loopy humor, and her relish for life showed us how even our tragedies are shot through with unexpected light and grace. And she's given us plenty to celebrate ever since.  

Still, I usually struggle each year at this time as we mark that momentous event and remember the many tears shed. I recall how our girl’s arrival was not met with celebration and joy as it should have been. Instead, a haze of grief and fear permeates my memories of those early days.

This year, a friend’s precious gift to me was to inspire a surprise party in the park to mark Margot’s ninth birthday. The only thing Margot loves more than a party is a surprise. Put them together and you have one happy little girl.

The love and joy of the event soothed my soul more than I can explain and healed old wounds from those dark early days.  We were touched that friends gathered round us to celebrate our girl’s life and show that she's very loved indeed.

But the party wasn't about my motherly emotional needs. It was about Margot and her friends having a great time.

And so they played silly games,

ate cupcakes,

and made kites.

It was a prefect day for flying.

Even the youngest of the crowd got their kites airborne.

And no, the symbolism of the soaring kites wasn’t lost on me.  Happy ninth, Margot. This one may have ended up meaning even more to me than it did to you.

Camping: The Anti-Vacation

Last week found us in Door County, Wisconsin, camping at Peninsula State Park. Door County is on the peninsula that makes that cute pointy thumb shape on the east side of a map of the state, bounded by Lake Michigan on one side and Green Bay on the other. The surprisingly rocky coastline is punctuated by formerly rustic little towns now become faux-quaint nautical-themed tourist traps. But this only added to the ambience and the romance of the lingering memories of a proud seafaring culture that once thrived right here, somewhat incongruously, far inland in the American Midwest. We honeymooned here many years ago. Now, I wanted my children to see it. It’s in their blood, after all. Their grandfather and great-grandfather were once boatwrights on the shores of this great lake. 

The special treat for us this summer is that my mom (Grammers), who lives in Alaska, is staying with us. She is quite the adventure-woman and was willing to camp with us. So it was a lovely week, even if a little wet and chilly. 

Okay, very wet and chilly, actually. I’m not a born camper. It’s not really a vacation without room service and a concierge, is it? But being between jobs, a “camping vacation” seemed like a good idea, although the term is inherently oxymoronic, I now realize. What with the torrential downpours, the mud, the kids slapping each other while mosquitoes the size of  humming birds feasted on our flesh, it often felt more like “camping” than “vacation”.

Not that we didn’t have plenty of vacation moments, though. We shared some lovely family moments all together. Evenings with the whole family around the fire reading classic children’s stories aloud. Watching from Sunset Park in Fish Creek as the sun sank into the bay. Going out for ice cream. Hiking the trails and climbing bluffs. Going out for more ice cream. Treasure hunting in the surprisingly good little resale boutiques. Gathering wildflowers. Making s’mores over the campfire. Playing in the sand on the beach. Sleeping all together in our cozy little tent while the rain drummed on the fabric.

I’d rather recall these moments than I would that first morning when we woke up to find Miss Margot mysteriously vanished out of her sleeping bag. She had crept out at the crack of dawn and gotten lost in the maze of campsites that all look alike to a groggy 8-year old. We were reunited only through the kindness of strangers.

With time, I may forget those unforcasted cloudbursts that drenched our firewood and soaked our shoes. But I may even choose to recall fondly the seagull that stole our big soft pretzel right off our table as we sat there. 

Or Miles’ tween sense of humor, which has it's plusses and minuses, but when I see this picture, I can only think how much I love this guy.

At Wilson's famous cafe

We were together, very together, for eight days and seven nights. And you know what? We actually enjoyed it.

The Reluctant Gardener

This year I’m really going to do it. I’m going to get my garden in shape and enjoy it instead of feeling guilty every time I look out the window or walk through the neglected yard. This will require some rethinking of what I expect from my little plot of land. It’s glory days as a prime stop on our historic neighborhood’s garden walk (under a previous owner, of course) are long gone. But that’s okay. I’m going to embrace it for what it is. 

It seems cliché to say so, but there’s a metaphor here for my life. I didn’t sign up to be a mom to special needs kids. In my life as in my yard, I’m a reluctant gardener. When Margot was born, well-meaning people said things like “God gives special kids to special people.” I can tell you though, it didn’t feel so “special” to sit in numb shock across from one specialist after another as they obligatorily rehearsed their worse-case scenarios for my little girl’s life. It took awhile for me to embrace my new life for what it is because it falls so short of my otherwise pretty typical expectations.

Most people, even if they haven’t had an experience like mine, intuit that clinging to expectations as if they were entitlements somehow isn’t right. I know this because I could wallpaper my entire house in the copies of Welcome to Holland I’ve received over the years. It’s a very brief reflection by Emily Perl Kingsley which likens special needs parenting to taking a trip to Italy that mysteriously ends in Holland instead. At first it’s keenly disappointing. You feel entitled to see Italy. Everyone you know made it there. But soon you learn that Holland has tulips and Rembrandt's, and you realize you wouldn’t want to have missed their distinctive beauty.  The poem is really beautifully honest and poignant. You will always dream of Italy, but you need not mourn.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-- Emily Perl Kingsley - Welcome to Holland

Our house is on a city corner lot shaded by about a dozen trees. My garden is more Rembrandt than Raphael, more Holland than Italy. It’s understated, shady, and shall we say, natural. I had always dreamed of growing herbs and vegetables, but it’s not going to happen. I’ve tried. I get stringy vines where pumpkins should be, and tiny tasteless tomatoes and peppers that show up in late August, already spent with the effort. So much for my hipster urban homesteader affectations. I’ll just have to love my garden for what it is.

And just what it is I could never have guessed that winter long ago when we bought our house. I barely noticed that it had a garden. Even when the sellers took their leave from the closing with “Good luck identifying all that stuff in the garden!” I had no idea what personal transformation was in store. I’d never had a garden before. But each day that Spring brought new surprise as new plants sprouted, bloomed, and then ran wild. And so I became a reluctant gardener. 

And so I became a mother. I had no idea what was in store when I gave birth to each of my kids. I only reluctantly took to parenting these special little people. Those early days were filled with reading, research, support groups, therapy, and not a few tears. There was definitely more crying than rejoicing at first. Where were the happy-go-lucky baby days I thought I had every right to expect. Further into the journey, I wouldn’t trade Holland for Italy.  

There was a lot more going on in our garden than I first realized. Alongside the disappointment that it wouldn’t yield the edibles I wanted, came a growing realization that under its seeming haphazard wildness, there was a pattern and design more elegant and understatedly beautiful than I could have made myself. It turns out that a previous owner was a professional gardner at the Morton Arboretum. Although the garden hadn’t been cultivated in some years, evidence of underlying beauty and order were everywhere. 

I eventually made contact with this previous owner, who told me what plants where what, what to coddle, what to pull, and what her intentions had been in the original plantings. Her inspiration and love of the garden were contagious, but mostly she encouraged me to “just enjoy it.”

I found the same inspiration from fellow travelers in parenting, whether with special needs kids or without. People lovingly reminded me that my life wasn’t over and that my children were going to be okay. That I needed to just enjoy them.

Our parental hopes and dreams are ever in the shade of an uncertain future. But my leaf-shadowed plot of weediness and neediness speaks of a rough-hewn beauty like that of wooden shoes or windmills, of a curious grace that takes hold when we let go of what we expect and embrace what we’ve been so generously given.

A is for Appreciation, T is for Teacher

In all the years of my life that I worked grownup jobs, from that first job as a Salad Girl (yes, that’s what it was called) at a steakhouse through years of burnout social service jobs, to my most recent role as a policy nerd, I never found one that made as much of an impression on me as my current gig. No, I’m not doing brain surgery or solving the mysteries of the universe. I’m a substitute teacher. I didn’t really choose this role. Having been out of work for months and recognizing that I couldn’t make a living writing a blog and sitting around eating bonbons all day, I thought I’d try out substitute teaching in our local public school district, purely out of necessity. 

It was with a sense of dread that I took on each assignment. I began by bouncing around daily from school to school, trying out early childhood, elementary, and even junior high. If you asked me how I liked it that first month, I may have started crying. I hated it. But eventually I found my sweet spot. I worked at Margot’s elementary school a few times and found that I really liked it.  Then they asked me to stay on as a “permanent sub”. Meaning, I have a regular job assignment that I do every day, but I’m technically still a sub so I can take time off anytime I need to for interviews or whatever. It’s been a great gig because I get to really see the inner workings of the school my daughter attends. I get the inside scoop on how Margot is doing everyday and most of all… I get to be around some of the most amazing and inspiring people I’ve ever had the privilege to work with. 

First of all, teaching all day is hard! If I ever before doubted that teachers were amazing, I now know beyond a doubt. I’ve experienced firsthand the extent of the effort it takes to be with a student or a group of students who are not one’s own children and to be responsible for helping them not only live to see the end of the day but actually learn and grow every moment of the day. I myself am not even responsible for a whole classroom, or for developing curriculum, or meeting common core standards, or any of the myriad stressful things regular teachers do everyday, all year.  For me this is just a stint - a fun chance to dabble in the world of elementary education. It’s a short term arrangement until I go back to my “real-life” career (I hope). Yet I come home exhausted daily. In fact, some days I fall asleep as early as 6pm. And I’m not even a permanent teacher. I’m a substitute.

But the main thing I’ve learned isn’t how hard teaching is. It’s that people who teach are freakin’ amazing! I’ve had the privilege to experience firsthand the love, commitment, and passion of literally every teacher I’ve come across. Nobody does this job for the money. It’s a labor of love. The teachers I’ve met not only mold young minds; they inspire. They care deeply. They tie shoes before P.E. so little feet don’t trip, they stay late making copies (even though they have a master’s degree) so students will have just the right materials. They manage classrooms like lion tamers at a circus and they make it all look so easy. 

Have you ever walked into your child’s classroom and just taken it for granted that students were quiet and working diligently? I know I did. Schools are supposed to be quiet studious places. Well, let me tell you, that crowd control thing in elementary and junior high? Not as easy as it looks.  It’s only possible because of an act of God or a very skilled and firm teacher at the helm.  Everyone should have to spend 6 months as a substitute teacher to see what amazing people there are in our schools. I have a renewed sense of appreciation for the quality of education my children are getting because of the dedicated people who work with them day in and day out.

Like a good Pinterest-obsessed mom, I scoured posts to find the perfect little token of appreciation for this week’s Teacher Appreciation festivities. Many thanks to Rebecca at Simple as That for the great template! 

It’s way too small and doesn’t come close to expressing what we owe these individuals. But, teachers ARE the balm! The balm for a weary mom who is so thankful to know that skilled, loving people care for my children in the hours they are away from me. Thank you.

Playing the Special Needs Card

I recently wrote about the relentlessness of special needs (here) and the challenges it poses to our family. Not surprisingly, people commented that they'd had no idea what life is really like for families like ours. That’s actually fine by me. Who wants to play the perennially needy and exhausted special needs mom? I’m not always needy and exhausted. But sometimes I am. Perhaps none of us are really as transparent about our needs and struggles as we could be. It’s hard to admit when we need help or to pull back and say no to new obligations when we’re overwhelmed. I guess I’m no different. 

One of the ways our family deals with the persistent nature of special needs as a family is to find opportunities to take a break, get away, or take time out from the usual obligations. Getting away as a family is one way we do that. For us that doesn't mean Disney or a tropical getaway. Sometimes we cash in any kind offers from friends (You've been warned - if you invite us to visit, we will!). That's why over the recent spring break while many of you were posting pictures of sunsets and drinks with little umbrellas, we headed north to sunny and beautiful, if not exactly palmy, rural Wisconsin. 

Birding

We slowed down, relaxed, took long walks through prairies, flew kites, fed chickens, and best of all, caught up with old friends. The surprise gift of warm breezes and blue skies kept us outside a whole bunch. 

Climbing

Being Boys

Our dear friends, Peggy (my college roommate) and Jeff and their kids have a small farm where they sustainably raise chickens and grow vegetables which they sell at a local farmer’s market. They also have quite the menagerie of cats, chickens, horses, and a dog named Hershey. 

The joy of a simple vacation, time away, and good friends. Aaaah.

Planting

Gathering

I also cancelled some obligations and activities over the break. I felt guilty at first, but it turned out to be the best thing for us. Back when Margot was first born and we had a new diagnosis, it was easier to ask for help or bow out of excessive obligations. Everyone rallied around us offering meals, childcare, and support of all sorts. It helped us through those initial painful days of shock and disbelief, the scary medical appointments, and fears of the unknown. Now, almost nine years later, we’re used to our new reality. But, as I described in my last post, things have never gotten back to what most people would understand as “normal." It’s challenging to be honest about that without feeling awkwardly inadequate, reminding people all the time or repeatedly asking for help. The fact of the pervasive nature of living with special needs is that long after we might want to be “over it” and move on, we’re still in Special Needs Land. I don’t want to be the needy friend who always grasping for extra attention and coddling. I want to be strong and independent. I want to feel good about helping you once in awhile.

But the fact is, my life is challenging in ways that most people would never just guess on their own. So I have to ask. I have to be honest. And I find that people are genuinely willing to help when I share my struggles. I’ve found that sometimes I just need to be really clear and say, “it’s been a very rough week and I need help” or let people know I need to get out of some obligation or activity on my typically over-programed calendar.

Privately, Bruce and I joke about this as “playing the special needs card.” This evolved out of a desire to make others understand our world. Rightly or wrongly, we often feel that we have to remind people we have unique challenges in order to justify asking for help. Sometimes we joke about it to lighten the mood, as in “I wish I could play the special needs card and go to the front of the line…” Wouldn’t it be cool if parents of kids with special needs got a deck of cards along with the diagnosis, all those doctor appointments, and extra stress? It would entitle them to a few extra perks once in awhile, just to level the playing field so to speak. There could be a card to “lose a turn” (at something like the bake sale or car pool), pick two (two hours away from the kids), and get out of jail free (skip potty training or some other difficult milestone).

But honestly, we joke mostly because of how much it is not a joke. Special needs are assigned randomly. What are the odds? For Down syndrome, ours were 1 in 500. Why us? Why not someone better equipped for it? Who knows? For us “playing the special needs card” really means admitting things are hard and that we can’t do everything. Not just because of the usual life stuff, but because we have some extra special circumstances stacked on top.

Sometimes we feel guilty. It feels like mooching to ask for a special dispensation or some understanding. It feels like an illegitimate entitlement or an excuse. But when we’re really struggling, being honest has been the best move we could make.  We find that people respond very generously. It lightens the load significantly when we can share it with others. 

Our week away in Wisconsin was a much-needed respite - refreshing and rejuvenating. We’re so grateful for friends who join us on our journey, cut us some slack, let us relax, and feed our souls with their conversation, hospitality and companionship.

Wold Down Syndrome Day: Why I Support Cognitive Research

Once upon a time there lived a little girl who loved life and lived it to the fullest. She was energetic and tenacious, smart and imaginative, kind and outgoing. But she knew that she was different from the other little girls in the land and was sad that because of that difference they sometimes didn't want to play with her. She complained that often when she tried to do things that she needed to do her brain wouldn't work right, and she knew that this was part of what made her different from the other little girls. Her parents loved her dearly for who she was and rejoiced in all that was unique about her, but they also grieved with her when she was frustrated or lonely. Then one day her fairy godmother appeared to her and offered a magic pill that would make her brain work better...

It's not a fairy tale. This is our actual life with Margot, and there really is a potentially magic pill on offer. Cognitive research into Down syndrome is at this very moment on the brink of realizing drug therapies that could reverse some of the disabling cognitive effects of the extra 21st chromosome in people with Down syndrome. Not just the ones that Margot experiences right now, but also the dementia that will otherwise certainly overtake her by the time she reaches middle age. So, while I love my girl exactly the way the way she is, I also unabashedly support the cognitive research that could provide her opportunities in life that the rest of us take for granted. Here's the low-down:

The cognitive therapies in development are expected to improve IQs by five to ten points. People with Down syndrome usually have mild to moderate cognitive impairment. A gain of just five IQ points would allow someone like Margot to be more fully included with her peers throughout the rest of her education, and give her a needed measure of independence someday when I'm not around anymore to take care of her. That's huge, but there's more that affects all of us even more directly.

While we're at it, let's cure Alzheimer's. This has got to be the most under-reported story of the decade. It turns out that the gene for the disease resides on that tricksy little 21st chromosome that's triplicated in people with Down syndrome. That's why everyone with the syndrome will eventually get Alzheimer's, most beginning around age 35. It's also why people with Down syndrome hold the key to eradicating this disease that so terribly affects the general population. Researchers who discovered the link between Alzheimer's and Down syndrome are now studying how they might stop the over-expression of the relevant genes. For the first time, we can try new therapies on Alzheimer's victims before the onset of the dementia, and so evaluate their preventive potential. Alzheimer's as we know it could be completely eradicated in our lifetime, but it's only the cognitive research into Down syndrome that's likely to bring this about.

Today is World Down Syndrome Day (3/21 - get it? Three copies of the 21st chromosome?). Just today, the LuMind Foundation, which raises funds for exactly the cognitive research I've just described, will match all donations 3 to 1 (get it?). Your gift of just $21 (get it?) today will result in  $63 for cognitive research. $100 becomes $300, and so on. Do it for Margot and all our friends with Down syndrome. Do it for your parents. Do it for yourself, too. If you're able, please consider a gift today. This is as close as we're going to get, in real life, to a fairy tale ending.

Life Boats

Starting with the birth of my first child, well-intentioned people who don’t themselves have any kids with special needs have tried to tell me that parenting is pretty much the same for all of us. I appreciate their attempts to normalize my experience and welcome me to the Every Mom Club. However well-intended, though, comments like this can’t help but unrealistically deny what we special needs parents actually go through. We don’t just bear up under the challenges that pop up day to day, but we carry the continual fear of an uncharted and unimaginable future year after year.

The best analogy I’ve found to describe the relentless stress of special needs parenting is in Stephanie Hubach’s book, Same Lake, Different Boat.

She imagines a great lake with each family in its own boat. Every family will hit troubled waters at some point. Some will get stuck in the storm for longer or sail in and out of the turbulence more often than others.  Families of kids with special needs, though, enjoy fewer moments of smooth sailing and spend most of their journey in cold, icy waters far from shore. 

I actually find this image quite comforting when I wonder why I sometimes feel overwhelmed, exhausted, or just plain too “different” from other families.

So what does the relentlessness of special needs parenting look like in real life? Here’s but one recent example. Two distinct and seemingly manageable challenges, Margot’s sleep apnea and Miles’ fear of throwing up (yes, it’s a thing), feed off each other and suck other co-morbid symptoms and side effects into their orbit to create what I now fondly call The Vortex.

Here’s how it works: Margot’s sleep study turns up a severe case of sleep apnea (comes with the extra chromosome in 99% of cases), which causes daytime drowsiness, lack of concentration, and learning problems. Okay, we can fix that with regular visits to Comer Children’s Sleep Clinic and nightly use of a CPAP machine (with its adorable fighter pilot face mask and insatiable hunger for replacement parts and tweaky adjustments). 

In the quest to ever more finely tune Margot’s sleep patterns, the good docs decide to increase the oxygen levels in her fighter pilot machine. This causes morning tummy aches, acid reflux, missed school days and, oh yeah, lots of vomit. I mentioned Miles’ fear of vomit, right? His anxious  “sticky thoughts” are held in check (sort of) with regular therapy and behavior management interventions that also need tweaky adjustments and regular doctor visits. But even these don’t help when the body fluids start flying. His resulting panic can impact life for quite awhile. His sister then feels guilty for getting sick, which doesn’t help her sleep nor concentration…. You get the idea. Both kids now need extra doses of sympathy and patience, which we have to somehow find while whirling in the howling Vortex. And, there’s no end in sight.

My point? Parenting isn’t really the same for all of us, but I’m not complaining. It’s just life in my particular boat. Some families are enduring stomach flus this winter while others live with cancer, severe asthma or life-threatening allergies. Some reasonably expect smooth sailing again soon while others see decades of heaving swells ahead and the fear of it turns their insides to ice. It’s all shockingly arbitrary and unfair. But here’s the thing: every family experiences difficulty at some level, and each unique journey carries its own peculiar value. There’s no race to overcome the most challenges and take the Super Parent crown. No, parenting isn’t much the same for everyone, but it turns out we all need grace, compassion, and companions for the journey wherever we may be on life’s great lake. Grace and peace to you.