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.

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.

Valentine's Day Memory Making

Sometimes having a child with special needs means going out of the way to facilitate friendships. Margot has many special friends at church, school and in the community. She loves being with and getting together with them. But sometimes she has trouble fully participating with her peers. I see her standing apart or playing alone when she could be joining in. With time I've learned to remain calm and take a deep breath.  She just needs a little facilitated play time with organized, adult-lead activities for her and her little friends so she can fully participate. When we need some of this quality special time with friends, that means...party time!

Little Miss loves her a good party.

This year we reinvented our almost-annual Valentines' Day party as a "Dollie & Me Partea." The guests were each invited to bring their favorite doll along. 

Margot had so much fun painting valentine Invitations for each guest and helping prep decorations and party activities.

Her love of organizing things and helping made her the perfect Party-Planner Girl! We had tons of fun making tiny food and drinks, matching girl/doll napkins and tiny table settings.

Of course we had to have a doll table to hold all the tiny doll goodies. I collected all the tiny chairs I could find around the house (yes, we have a couple...So?) and I may have also used this as an excuse to scour thrift stores. I was surprised how easy it is to find tiny chairs at thrift stores. Now I have to find something to do with them. Hmmm... future blog post on up-cycled doll chairs?

The party was a blast and the seven little girls were all dressed up and excited. The dolls were all gussied up in their finest as well.

We played games, exchange valentines, did crafts and ate too many cupcakes.

Everyone went home with an up-cycled t-shirt bag that could be used to carry their doll in. Of coarse the dolls needed bags too so those were made out of up-cylced onesies.

Little goodies inside included matching doll and girl notebooks. Found these great customizable notebook covers on Inchmark.

All in all, it was well worth all the effort. Little Miss loved playing hostess and made lots of good memories with her friends. The social interactions and warm fuzzy feelings will keep us going through the rest of these cold winter days.