D is for Dahlia and Down syndrome

I love to walk fast. Always have. Life is short and there's a lot to do, so why waste time getting there? 

My 14-year-old with Down syndrome has two walking speeds: slow and slower. When we walk together, 60% of the time I walk ahead anyway, knowing that my speed will encourage her to keep going and perhaps pick up her pace slightly above death crawl. The other 40% I stay next to her out of guilt, feeling like a good mother would always walk slowly step by-step with her child with physical limitations and never EVER rush ahead. Those times are pure torture. Oh sure, stop and smell the roses blah blah blah. But it's like we start the walk and a quarter of a mile later....now I'm 100 years old. 

God really double downed on me when Vivian had her hip surgeries/cast/recovery year. For about eight months I had to walk slowly for TWO of my offspring-- which really made no sense since....I walk fast and I made them so....creation error? And yet-- I haven’t been able to stop thinking about it.

Slowing down. Dismantling the rush. Instead of running through a minute being forced to say hello to every second. Impulse wanting to speed at 90MPH lane and yet we're in a horse and buggy trotting along, able to count blades of grass on the side of the road, very very late for a very important date. Why?

Motherhood is funny like that. It's like they say, motherhood would be so easy if it wasn't for all these children.

I think a lot about the fact that we cannot control who our children are, but we can control what type of mother we want to be in response. Oh just off the top of my head-- I can't control that my 14-year-old walks slowly. But I can control what kind of fast-walk-loving mom I want to be in response to her walking speed.

But it even goes deeper than that. It's a mom who is obsessed with books and reading-- and a child with such strong OCD, she's obsessed with eating and tearing books up.

It's a mom who thrives on accomplishments, and a child who....doesn't.

I love having a pretty room, and this summer out of OCD boredom, she tore the paint off an entire wall in my prettiest room.

From the stat book, it's a very bad fit. We walk together like a mismatched pair of shoes-- one a high heel....one a running shoe.

And yet....I know that this isn't about it being a "fit" for me at all. In fact, it's not about me at all. This entire motherhood experience is about her, the child. What does she need? How can I help her be her best self? What can I do to prepare her for life? For adulthood? 

It doesn't matter that I like to walk fast and I'm frustrated by her tempo of choice. Maybe she needs help walking faster? Maybe it's physically impossible for her to pick up speed and she's just doing the best she can? How can I encourage her to move her body more while making walking less laborious and difficult for her? How can I help her be the healthiest version of herself when I love to walk and she....doesn't.

Enter: Teaching Addison to ride a bike. 

A few days ago I went on a lovely 2 mile walk with Addison, and I wasn't frustrated by the tempo at all! Because Addison was on her bike. It turns out that taking a summer to break bike riding down into tiny, learnable and achievable pieces has created the perfect walking environment. I walk. She bikes....slowly while I walk fast. Somehow....this is the perfect tempo match. She beams with the freedom of steering her own rig. I beam because the joy of fast walking makes me beam on the worst of days. Maybe she needed the assist of the bike to go the tempo that I can go with just walking. That doesn’t make her a slow walker or a bad walker. It just means she needs accommodations because her body is built differently than mine. (btw, whenever I flip the perspective to realize this, it always makes me feel like a monster that I didn’t realize it sooner.)

We found an activity that isn't as hard on her joints as walking and we can do a push/pull situation when she needs a break or an assist up a hill. 

Sometimes it's not that "she's a slow walker". Sometimes that's just code for something she's trying to tell me. Like maybe, "it hurts when I walk". And it's my job to find the actual problem, and come up with the correct solution-- without her communicating any of it other than....walking at the speed of leap year birthdays.

14 years in to parenting a child with Down syndrome and I find I still have a lot to learn. This is definitely getting trickier as she gets older. OCD has carved our path out and it's steeper and more treacherous than I had imagined way back when. 

It's more than just walking speed. I see the world through a round, clear lense and she sees the world through a kaleidoscope. Breaking down behaviors into the "first find the problem then find a solution" equation is a daily event.

Here's another bad fit. I struggle with patience. She...requires it. 

I cannot control who she is....but I can control what type of mother I want to be in response to who she is. For me this means two steps forward, ten steps back in the patience game. Get up and try again.

But here's the deal about slow walking, seeing the world through a kaleidoscope, patience growth. I HAVE learned to stop and smell the roses blah blah blah.

Or rather….dahlias.

This year I grew dahlias for the first time.

I found great therapy and mental health breaks in the beauty of my dahlia garden as I processed the "first find the problem then the solution" daily situation. It was a quiet and peaceful place. A place that held answers in the silence and beauty.

One season in and I am obsessed dahlias…. with the colors, the honeycomb shape, the wild combo of flowers and greenery that simply bring me joy. Dahlias are the precious gems of flowers, I have learned.

A past version of me would never have spent hours in a garden, just soaking them in, one dewy petal at a time. This desire is new. This skill is new. And in learning to appreciate quiet time amongst the flowers, I see a new side of Addison.

Halfway through the summer it occurred to me, Addison isn’t a “slow walker”, she’s a dahlia in a different form.

They too, require a lot of patience. They too, involve kaleidoscope living. They too, need "find the problem then a solution" when the leaves are too yellow but why? What bug is eating the petals over here? Is this-- is this to much rain? They too, after you put in the long hours, months of patience watching each green leaf slowly unfurl--- burst into gorgeous, luscious color one slowly bending petal at a time. Like the joy on Addison's face as she truly discovered how to ride her bike and the freedom of pedaling/steering her OWN ride.

Patience is required when the bud appears and you think a flower will be soon but you think wrong. You wait day after day, week after week, as that bud taunts you with the promise of a flower, but no flower. All of your friends buds have already flowered into actual dahlias! Instead you wait as one tiny row of petals appear. Then a few days later, another. A week later, you can see most of the flower. Two weeks and the flower finally hits you in the face with all of its glory. It’s always worth the wait. 

And I've got news for you-- dahlias don't walk very fast. 

To be fair, a dahlia has never eaten one of my books. But they do eat money....as it was not cheap to buy those tubers and get started in the dahlia game.

They too, finish growing one beautiful skill (flower) but the excitement dies quickly in the vase and then we are stuck waiting patiently for another flower to bless us. The process is always restarting.

Sometimes phases with Addison are just so much harder than others. Like— we jump on the struggle bus and we ride the entire line. Repeatedly. And now. Now we are headed into winter. The dahlia beds are dug up and just downright ugly. I spent hours dividing the tubers— getting blisters and numb legs as I sat too long trying to figure this thing out. It was messy, frustrating, laborious work.

And yet come spring…..the glory will return once more.

Parenting Addison has not always been easy. But getting to know her as a person. Being gifted with the privilege of the one that she looks to and calls “mom”. Being in the front row to seeing her excitement and and happiness with just….life. Spring always returns.

In fact, “not easy” isn’t strong enough. It’s downright hard at times. But you know what? So is flower farming. It’s hard work. Backbreaking. Inconvenient. But all good things are worth the work. All beautiful flower buds are worth the inconvenience of a planting schedule. Of the dreaded tuber divide come fall.

This all bends my mind repeatedly to, “Be Still, And Know That I am God”. In spending time with dahlias, perfectly created. In parenting Addison, also perfectly created.

14-years in an we are taking the journey one step at a time. But even on the worst days I am so grateful. I am so grateful to be her person. I am so grateful for her— the adult that she is growing into. I am grateful to be forced to view the world differently. Because let’s face it— kaleidoscope vision is way more gorgeous than my boring round lens. She brings the color and the life. Frustrations? Yes. But don’t we all?

Sometimes parenting is when the pumpkin thrown in last year’s compost pile plants itself with last year’s seeds and grows into an impressive plant almost entirely on its own, creating a pumpkin so large and bright and shiny that it wins awards at the fair and you get your picture in the paper with accolades and “WOW look what she GREW"!” And then after the fair, you make it into 100 delicious pies and everyone wins.

And sometimes parenting is quiet mining in the flower garden with the highly sensitive, requiring-a-lot-more work gem flowers that need the individual attention in order to fill the world with color. And when you tell someone that you grew a dahlia, they say, “Oh is that what it’s called? I’ve seen pictures for years! From a tuber? Really?” The world is getting better at admiring the gems, but they still don’t realize the work that goes into them, or the effort of the gems themselves to create their best selves. And sometimes we are afraid to be honest about the hard work lest people think the work isn’t worth it.

It is always, always worth it.

It is such a privilege to be gifted with dahlias (in all forms) and to care for them. Even the backbreaking work— that’s part of the privilege.

And today, on Addison’s 14th birthday, I look back with a lot of emotion at our history together. It has not been easy. But our path has been filled with gorgeous, long-awaited dahlia blooms, life lessons, and joy. I am so grateful that 14 years ago today, Addison chose me to be her mother. I am completely unworthy. But every day I work just that much harder to see that next bloom. It’s my greatest gift.

The older that Addison gets, the more I realize that I don’t know what I’m doing. I don’t know how to be her mom. But I also know that my own inadequacies don’t matter. Because this isn’t about me. My job is just to show up every day and let the dahlias tell me what they need. Even though it’s not communicated in spoken word.

I can’t control how Addison will grow into an adult. I can only choose what kind of mother I want to be in response.

Happy birthday, Addison. I love you more than dahlias. I’m so proud of you.