I’ve Moved!

My blog has moved! You can find me now at:

www.gardenofmyheart.com

Looking forward to seeing you there!

Summer

Blog hopping this week! Check out everyone’s favorite summer time memories and traditions on the Down Syndrome Blogs Blog Hop!

So what do I love about summer, and what do I hope to share with Rowenna?

It’s the sound of summer. It starts with being able to finally leave windows open and waking up to fresh air in the house. Hearing the hum of lawn mowers and the delighted chatter of neighbor children without being muffled by layers of glass. The buzz of cicadas and bees, the birds chirping. Neighbors barbecuing, eating outside and laughing. Everything and everyone just sounds so alive, relieved to be up and about after winter. The sound of wind blowing through leaves and rain pitter pattering through the trees instead of the cold creaking of branches in the winter.

It’s the movement of summer. The digging and hauling and weeding. The mowing and trimming. The jogging and biking and swimming. The long road trips and impromptu stops along the way. The strolling and sunbathing instead of the hurry up to the car to get out of the cold.

Summer 2011

It’s the taste of summer. Fresh berries, watermelon, corn on the cob. Things we can eat all year but taste the best when they are local and fresh. Popsicles and ice cream. Burgers off the grill. Fair food you know you shouldn’t eat but indulge in anyway – things that are deep fried and sugar coated.

It’s the light we get in summer. The cheerful morning sun, the hazy heat of the afternoon, the endless pink-and-orange sunsets. Long patches of sunlight that move lazily across the living room floor. Dappled spots of sunlight as you sit under a big leafy tree.

Summer 2012

It’s the promise of summer. The green shoots popping up in the ground, plants that will be heavy with tomatoes and peppers. The endless days with so much time to have fun and move and grow. Seeing people you haven’t seen all year. Staying up long past bedtime to sit around a fire, watch a movie, talk.

I want summer to be a golden time for Rowenna, full of rich memories and new experiences. And if our past three summers are any indication, I think summers will be a bright spot in her memories!

 

Jax

Our wonderful cat Jax is missing.

He’s been part of our family for over 7 years, very much a fixture in our daily lives. Jax has always been a special cat – always purring and licking us, content to just be with. A good traveler and always happy to see you. We often joked that he must have a bit of dog in him for the way he would meet you at the door when you came home, lick you much like a dog does, or even play fetch. And he was always, always purring.

He was a bit of a goofy little cat and has never been big on survival skills. In fact, he’s tried to jump into his fair share of in-use fireplaces, hot ovens, and even set himself on fire once by getting a little too curious about a gas stove. He was also chronically ill during his life with us. We tried everything to help him (including visits to an animal acupuncturist and a foray into herbal treatments when antibiotics simply stopped helping), but it became clear that he was just a sickly little cat, happy despite his constant sneezing and coughing.

When we brought Rowenna home from the hospital, the first thing he did was climb right into her car carrier and purr. When she was doing tummy time or laying on her back gazing up at her toys, Jax would snuggle alongside her. He was the reason she first sat up, rolled, crawled, walked, and climbed. (He quickly earned the nickname “therapy cat.”) When she cried, he would gently bump her with his head and give her a few licks. One of her first signs was “cat.” The two have been a pair from the start.

It was love from the start.

We have been working hard on teaching Rowenna the concept of “gentle” and she generally went by these guidelines, but even when she didn’t, Jax would simply flop over and purr. He never once hissed or bit or scratched anyone for any reason.

Yes, Jax is riding in her baby carriage.

He would sometimes sleep under her crib, and more than once I went to wake Rowenna in the morning only to find the two of them having a little morning conversation, Jax purring and Rowenna grinning ear-to-ear.

Morning conference.

Our other cat, Milo, recently pawed open a door and Jax snuck out. I don’t really understand why – he rarely showed an interest in straying very far from his beloved Rowenna – but away he went. We made fliers, talked to neighbors, walked our block, and hiked through the woods behind our house and the neighbors’ houses. We left out bowls of kibble and his favorite blankets and pillows. We registered Jax as missing with the local shelter and the police department.

But he is just…gone.

Rowenna’s been walking around the house signing “cat” and making the purring noise she associates with Jax. (She’s rarely heard him meow, he’s always purring, and it’s little wonder she thinks cats make a purring noise despite us trying to teach her it’s really “meow.”) She has a very clear circuit that hits every part of the house she shared with Jax. A cubby under our tv for snuggling, our bed where we played with Jax in the mornings, the sliding door where they sat together, soaking in the sunshine. She’s been clutching his toys and laying her head on his pillow, crying. One night she sat at our sliding door for over a half hour while signing “cat” and crying. Nothing I did could console her, so I ended up just rocking her and crying along with her.

We’re trying to acknowledge her desire to see him while trying to explain he’s no longer here. We use words we think she can understand, but how do you explain to a three year old that this creature she loves more than anything is simply gone and isn’t coming back?

And while watching my sweet girl miss her cat is breaking my heart, I am bracing myself for the thing I know is coming that will be even worse: the day I realize she didn’t once go to check the cubby, the day she didn’t sit at the back door and sign “cat.” The day she gives up on him being there.

Maybe one day Jax will come back to our family, but I can’t say we’re holding much hope that it will happen. He’s slipped away. We only hope now that he is safe and happy out there on his adventure, and if he is found, found by a gentle and loving family that will appreciate him, sneezes and all.

Soaking up the sun together.

Three

Rowenna is three today.

When she was born and we were swept up into a world we never dreamed we would be part of, all the appointments and therapy and what ifs, it seemed like three was so far away. Three, with its built in transition from early intervention to public school.

It was hard to imagine what life would be like with this child who felt like such a mystery. This child whose future felt shrouded by the trappings of Disability World.

Yesterday, something happened that fully sums up what it’s like to live with this sweet girl. The answer to the mystery of what will be.

We went to the public library to choose some books for the weekend and to allow Rowenna to blow off a little steam. I had forgotten the library opens later on Fridays than other days of the week and we arrived to locked doors and a handful of people waiting to get in. Ever unflappable, Rowenna took this as an opportunity to walk around and chatter with the people waiting to get in. Most were happy to say hello and engage with her.

There was a man off to the side, crouched on the ground, not part of the main group of people waiting. He had his hood pulled up over his head and a large back pack stuffed full sitting at this feet. Everyone was ignoring him. Granted, he was giving off a “don’t look at me vibe.” Maybe he was having a bad day.

Rowenna took to walking up and down the sidewalk, pointing at cars and chattering her stream-of-consciousness as she often does on a walk. She rounded the corner and came upon the man with the backpack. She cocked her head and looked at him, then his back pack. He didn’t say anything as Rowenna approached and she ducked down a bit so she could see his face under his hood. Then she gave him a huge smile and said hi.

No response. Rowenna turned and walked up and down the sidewalk again, then came back to say hello to him. She did this a few more times and got no response.

Finally she rounded the corner one last time and squatted in front of the man, though kept her distance. She looked up at him, right into his eyes, and rattled off  a string of delighted chatter, fixing him with a wide smile.

And there it was. The man pushed his hood back, shook his head in disbelief, and gave Rowenna a big, beautiful smile. She said hi again and he said hi back before standing up to head into the library, still shaking his head and smiling. And that “don’t look at me” vibe? Gone.

This girl of mine has the uncanny ability to pick just the right time to do this. She is never pushy, always gentle. She gives people space but seems to know exactly when to give them a smile or a pat on the back, to draw them out a bit and make them smile. And when she looks at you, she’s really looking. She’s seeing you. And at the heart of it all, isn’t that what we really want? To be seen?

I don’t know all that’s to come for my sweet girl, but I do know this: it is a future filled with her kindness and gentleness of spirit. A future of seeing others and of being seen. I wouldn’t want things any other way.

Happy birthday, sweet girl!

Gone

I’ve lost another baby.

That’s the third I’ve lost, the third in a row, and my fourth pregnancy. Lost before we knew boy or girl or had much time to dream about who might be joining the family.

There’s not much to say at this point, though this third loss magically opens a door to all kinds of testing and lab work and interventions should we choose it.

But I’ll never have the answer I really need: why my babies came to me only to leave again so quickly.

And I don’t know how to regain the other thing I need: hope. Hope that Rowenna might be a sister, hope that a beautiful plus sign on a pregnancy test might end with a sweet baby in my arms. Hope that when I share our news I won’t later be tearfully sharing a loss.

It seems like such a simple thing to wish for, doesn’t it? A child. Something that seems to come so easily to so many people.

It feels like wishing for water but finding only a well run dry. Wishing for food but finding none.

Such a simple wish, such a basic, instinctual thing to want: a child.

And when it’s given to you but taken away again in the blink of an eye there is nothing left but a hole in your heart, a hole that can’t be fixed, and an endless list of questions that can never be answered. Nothing can replace a baby that is lost. That unique being, that single instance of chromosomes and cells and life will never be replicated.

Not much to say, and not much to do but move forward. Slowly. One foot after the next. Wondering, always wondering.

The Line

Today was Rowenna’s last day of Montessori preschool. For the end of the year program, parents joined their children in a circle as they sang their favorite songs with their teacher. The children either sat on carpet squares or on their parents’ laps in the circle, singing and performing hand actions.

Rowenna? She was walking around inside the circle, smiling and happily gesturing along with the songs. She was the only child moving around. It was apparent that Rowenna wasn’t doing it for the attention (the “awww” factor from the audience) but from a need to simply move her body.

Since this is a Montessori school, her teacher did not try to have Rowenna sit down. As long as a behavior is not harmful to another child or too distracting for an activity, children are usually left to make choices like this. (Her teacher had also pre-emptively let me know that Rowenna would probably do this and that it would be fine with her.) And while Rowenna was the only one standing and the only one moving, she wasn’t terribly distracting. In fact, I got the distinct impression that her classmates are used to her doing this, and even heard a delighted exclamation or two from her classmates of “Look at Rowenna dance!” I’ve learned more than once over the course of this year that children really are so accepting of differences and the things that might cause an adult to raise an eyebrow are simply seen as a classmate embodying her joy.

But while watching my girl soak up this music and participate in her own way, I stole a few glances at the other parents. Most were absorbed with their own children – and rightfully so – but there were a few casting quizzical glances at Rowenna and occasionally looking back at me.

Clearly, my child was not demonstrating age-appropriate behavior. Even the 18 month olds in the group were sitting quite happily as they sang. Clearly, there was something different about Rowenna, and in those quizzical glances I could see them trying to figure it out. Rowenna was crossing A Line by not sitting with the other children, but she was also quite obviously happily engrossed in her movement.

Sometimes I wonder about The Line. The Line between allowing Rowenna to simply be Rowenna and helping her understand social boundaries and customs. Maybe that seems too much to consider at such a young age, but considering Rowenna’s slow – but steady – learning curve, it’s good to plant little seeds ahead of time and to watch them blossom later.

Where’s The Line between simple compliance and autonomy? What do I take from her if I insist that she simply comply? But what do I take from her by allowing her to act on impulse? Where is The Line, and how do I successfully straddle it so Rowenna has some autonomy, but also some understanding of what it means to live in a society, to be a friend, to be a classmate? When do I meet her where she is developmentally, and when do I ask for age appropriate behaviors?

Is Montessori, with its safe environment for exploring things of interest to Rowenna, the best choice for next year? Or would a more structured environment that functions on the idea of compliance be the better choice?

How important is it that Rowenna sit in the circle – or is it more important that all children have the freedom to dance with her in the middle of that circle? (For what it’s worth – if any child had wanted to join her in that this morning, they would have had the freedom to do so.)

And I suppose that brings me back to what we’ve been turning over in our minds all year – what is the best school environment for Rowenna? What is the purpose of a 3 year old attending school? Do those reasons apply to Rowenna and if so, in what way?

And as always, I’m left with many questions and nearly no answers, but time enough to figure it out.

Mother’s Day

It’s Mother’s Day and I want so much to simply celebrate the girl who made me a momma.

I want to be able to say I’ve been pregnant once and have one beautiful girl. I want to go back to the time when pregnancy meant a baby in 40 weeks, for my family to grow, for my girl to be a big sister.

But here I am, three pregnancies and one sweet girl and the knowledge that babies don’t always stay. Knowing you can watch your belly grow only to have it fall slack. It’s days like these when I long for the baby that should have been in my arms for months now, or to run my hands over a big pregnant belly, just three weeks from Clementine’s due date. It’s days like these I ache with loss, when it seems my entire facebook feed is full of babies and bellies, and I’m here with my girl but also a sense of emptiness.

These kinds of days are few and far between for me now, but the idea that I should be celebrating my motherhood and womanhood just doesn’t ring true this year. It feels empty and like I’ve failed in some way.

Since sharing Clementine’s loss, I’ve heard from many of you, and for that I am grateful. It seems there is a large, silent sorority of sorts – women who carry a secret pain the world cannot handle hearing about, or maybe we cannot bear to talk about. There is no secret handshake or sign to know we’ve crossed paths with one of our sisters. Maybe just a sad smile when they hear you stumble over saying you have one child but hope so much for one more. Or the shared cringe when someone offers some well-meaning, but ultimately hurtful, advice.

We plan to spend the day arranging our flower pots and prepping the vegetable garden. I want to sink my hands in the earth, that cool and calming home for things that grow. I want only to plant and water and nurture. To watch my girl explore and dig and hear her shriek with delight at the sight of colorful blooms.

And that’s what we’ll do, just the three of us.

An End

We’re nearing the end of an era for Rowenna. In 3 short weeks, my sweet girl will be three and she will finish with the Birth to 3 program. It’s a hard stop – on her third birthday, everything just ends. No transition, no easing into the next step. Rowenna’s situation is a bit different in that we’re going straight into summer so while kids born during the school year would have therapy one day then public school the next, we get a three month cushion in between.

People have expressed concern that she will go “three whole months” without therapy, but we’re not worried, and neither are her therapists. Summer is the best time for natural therapy. She will have plenty of opportunities to run and climb (PT!), dig, draw, and fill (OT!), and chatter up a storm with everyone we meet on our summer adventures (ST!).

We’ll never know if the therapies themselves have made (or will make) a difference for Rowenna. And even after three years I’m left with some lingering doubts about the message it sends to families to have professionals “intervene” from birth.

But what I do know is these three women are family and we will miss them very much, and that there’s something to be said for a team supporting a family in these early years, cheering them on and empowering them.

They have been with us through surgery, hospitalizations, and endless random viruses. They have sent supportive texts and made concerned phone calls when Rowenna would throw us for a particularly wild loop and we all worried together about what would be. They have been with us throughout all my forays into advocacy and through all my chattering stream-of-consciousness monologues in which I wonder and dream aloud about my girl. They have supported us in every choice, every step along the way, never questioning and always providing gentle guidance and support.

And I believe, without a shadow of a doubt, that they care about my girl.

I was out of town at a meeting today so my dad was holding down the fort. He took some pictures for me since he knew we were nearing the end of our time with our team. I kind of laughed it off – my dad is a lot more sentimental than I am – but when I sat down to flip through the pictures, I was surprised to find tears spring to my eyes.

I’ve spent hours upon hours with these women and have always been glad to see them. But it took seeing them through the lens of a camera, in pictures taken by someone else, to see – to realize how they see my daughter.

PT and OT Joint Session

I think they like her. And I know Rowenna likes them. She runs to the door when the bell rings and I tell her Miss D is here. She excitedly peeks into their big bags full of fun things to explore. She is all smiles, all curiosity. Admittedly, there are PT sessions when she seems hell-bent on showing just how good she is at sitting on the ground and not moving – but on the whole, it’s always been a positive experience for Rowenna.

Speech Therapy

So as we finish our time together, I am grateful. I am glad to have had a team who saw only Rowenna and not her deficits. Went along on my crazy ride of no developmental assessments or homework assignments or arbitrary tasks. Made everything about how Rowenna can be a bigger part of our lives, our home, and our community. Smiled, laughed, danced, and made silly faces to make every single session something for Rowenna to look forward to. Listened to my worries about her health. Cheered us on as we placed her in preschool. Engaged her with ever more clever activities and learned to read her little nuances.

And always, always celebrated my sweet girl.

For all of that and more, I am grateful.

Hope Bigger Than Fear

I’m just home from a conference. I spent 2 days surrounded by families and individuals with disabilities at a conference about life in Disability World – the ins and outs of service systems, how to advocate for yourself and for systems change, and discussion of the Big Ideas that cause us to step back and look at those systems with a critical eye. Self-determination was a prevalent theme.

The “dignity of risk” cropped up here and there as well. It certainly goes hand-in-hand with self-determination. I’d argue it’s one of the guiding principles. After all, self-determination is about guiding your own life, and don’t we all sometimes guide ourselves into uncertain situations when we feel the payoff outweighs the risk? And haven’t we all failed at something, only to learn something about ourselves? There is dignity in choosing something for yourself, even if it is risky or ends in failure. For me, the dignity of risk is the ultimate sign of independence – more than having my own home, or having attended college, or driving a car.

Here’s where raising a child with a developmental disability feels a bit different. The stakes of failure seem so much higher. It’s easy to worry, and in that fear, to hold your child back. And frankly, there will be a lot of people around you telling you it’s ok to hold your child back. That it’s better, smarter, safer.

I think about all I hope for Rowenna’s future – for her to be happy, to feel fulfilled, to be an integral part of her community. I hope for her to have real friends and things to look forward to and be excited about. The trappings of all that, the whats and hows, are less important. Rowenna will guide us there. But there are fears, too. What if we can’t figure out a way for her to achieve her goals on her own? What if we can’t find a good team that knows and loves our girl and are willing to support her self-determination? What if we allow her the dignity of risk and she gets hurt – emotionally or physically?

One of the speakers said something I’m going to tuck away for those days when the fear looms big and I want to sweep my little chickie back under my wing: make your hopes bigger than your fears.

It’s so simple, so beautiful and yet I know there will be days when it’s a challenge to remember. But it will be there, and I’ll use it to remind myself to keep adding to my hopes for my sweet girl and her future.

Open Letter to NDSS and NDSC

I read that you are seeking information from the community about the proposed law enforcement training program you plan to help implement. As mother to a child with Down syndrome, I would like to share my thoughts.

It seems your support of a training program is a foregone conclusion. Since you feel you must support such a program, I urge you to consider the following as you move forward.

Consider the precedent this kind of training sets should law enforcement officers harm or kill a person with Down syndrome in the future. If the officer involved has not yet received this special “Down syndrome training,” will he or she be able to use that in their defense? Will the three men responsible for Mr. Saylor’s death be able to use that in their defense? When writing this training, please be clear how, exactly, lack of specialized training led to Mr. Saylor’s death. And please be clear that lack of this kind of training is not an excuse for poor decision making.

Consider the precedent this kind of training sets by establishing a false standard for Down syndrome. There is no one set of diagnoses or behaviors that defines a person with Down syndrome. Individuals with Down syndrome share one thing, and one thing only: a third 21^st chromosome. Outside of that, they are as unique as you or me. As an example, for each person with Down syndrome who does not mind being touched, there is another who reacts negatively. What will the training teach – to touch or not touch? This could make a significant difference during interactions with law enforcement. Examples like this are many – too many to craft an effective plan for working with all people with Down syndrome.

Training to a false standard of Down syndrome only creates further confusion for those working with this population. A person with Down syndrome will react as an individual, based on his or her individual needs and on the unique situation. No amount of specialized training can teach law enforcement what they should already know: treat people with respect, keep calm, read the situation carefully, and do not escalate unless all other options have been exhausted and the person is an immediate threat to himself or others.

Consider what this kind of training says about the Down syndrome community at large. It furthers the belief that community members require highly specialized training to work with individuals with Down syndrome – an argument often used to deny individuals access to jobs, schools, and other community resources. Just this month a teenager with Down syndrome was denied a gym membership because the gym has no “qualified” staff. This concern is real and immediate. What will the training teach that being a reasonable, kind human being cannot? People with Down syndrome require dignity, respect, and perhaps a little extra time or a little extra support. No one needs special training to work with them, spend time with them, or, in the case of law enforcement, to protect them.

I urge you to please consider these three points as you develop training for law enforcement. Please do not let this become a step backward for the Down syndrome community’s push for independence, dignity, and respect.