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.

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.

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.

What's in a Name

Choosing a blog name wasn't as easy as I'd thought. The only reason I really ever wanted a blog was to use some form of a fun spin on my two kids' names which lend themselves to all kinds of double-meanings. I knew I wanted some combination of  "Margot, Miles, Mar, Go, Got, Smiles." But many other people apparently liked the obvious combinations of those names too and not all options were available. Then, I made the mistake of asking the kids to weighed in and things got emotionally charged because they both insisted their name should be the lead. Miles is unhappy with this one because he doesn't care to be possessed by his sister... or to come second. Still, in the end, I went with it because when Margot was born we knew we were all on a new journey. Miles implies a journey, milestones, the passing of time. Margot's lilting french name reminds me of "going" forward, of marigolds, and mostly of her 3 grandmothers - all "Mary"s and all lovely, strong women. Plus, Margot does love her brother with a sort of fierceness and possessiveness I could never have dreamed of when I planned for 2 children. Like all siblings they're rivals, competing for attention. But they also compliment one another's gifts, prop one another up, buoy each other's confidence, and offer built-in companionship.

I hope this blog will be an outlet for my many musings as I navigate my many life journeys through work, family, friends, creativity, and spirituality, in no particular order. I don't claim to have an extraordinary life or profound things to share. But I believe each ordinary day is precious and each path worth exploring. So, I set it down in writing to see where this journey leads.