Sunday leaves

We were doing well. Rhema and Hope were sandwiched between Brandon and me in the pew. Rhema colored happily, feverishly on the church bulletin as the congregation sang.

And then during the prayer time, Hope coughed.

I knew what was happening, but my hands – trying to hold one and protect the other – did not move fast enough. Rhema, overwhelmed, let out a strangled scream and lashed out. Brandon gasped and we scrambled to contain the situation but couldn’t help causing a little scene in the back of the church. Rhema’s marker cap rolled a couple rows forward under the pew and she frantically lunged for it, bumping a gentleman in front of us. Once she had her cap, she and I quickly exited the sanctuary. I saw Hope as we left, huddled next to Brandon with tears streaming down her face. Her hair had been pulled pretty hard. I saw the shock and sadness in her eyes, all too familiar now, and oh it hurt me to see her like that.

We went to a classroom upstairs and Rhema calmed. I tried talking to her about what had happened. Then we came down with more markers and paper and settled at a table outside the sanctuary doors. We would be fine, I thought, as long as we didn’t go back inside the sanctuary. I tried to listen to the sermon. But I was still reeling. The aggression and self-injury that sometimes accompanies our flavor of autism can be absolutely crushing.

My heart broke for Hope and Rhema. And honestly my heart broke for me. I sat there feeling sorry for myself and for the cup we’d been given.

During the service people were encouraged to write something they were thankful for on a paper leaf and bring it to the front. The sanctuary doors were opened and I saw Hope as she stood in line to pin her ‘thanksgiving leaf’ on a board up front. She saw us and waved and gave me a beautiful, peaceful smile, and my eyes filled. Love without condition. There was no doubt in my mind what she’d written on her leaf and who was at the top of her list.

(I found my phone later and Brandon sent a picture of Hope’s leaf).

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I looked at Rhema, her head down and hood up, humming softly and delighting in the swirling colors on her paper. Thanksgiving, true and deep thanksgiving flooded my soul.

One of the church elders approached us. “Would you like to do a leaf? I can take it in for you or I can stay with her while you take it in.”

I hadn’t planned on writing a leaf (probably because I’m stubborn). But I took him up on the offer. Without hesitation I wrote down one word and handed it to him.


It’s not daisies and unicorns here. Eleven years and counting, autism has taken far more than it has given to my darling girl. She struggles daily to live in a body that does not cooperate, and I dream of a time when she can tell me something, anything of what it’s like to be her. Some days all we know is helplessness, heartache and frustration.

I am more inclined to find reasons to be thankful in the midst of a hard thing. But to me, giving thanks for a hard thing was thankfulness on a whole ‘nother level.

But in that moment I was grateful for the limp of ‘disability’ that forces us to lean on Him. For weakness so that we draw from the source of real strength. For God’s glory in struggle and eyes that see Him now in high definition color in the pain and the gifts and the triumph. For precious people in our lives who walk with us, cheer and uphold us. For knowing Gospel love every day that bears all things, believes all things, hopes all things, endures all things.


On a little paper leaf.

A joyful offering of gratitude with all my heart, broken pieces and all, to the Giver of all good things.


The alarm clock says “Go!” and I’m running and rushing. And my big girl, my tween, still needs help with her every part of her day.

The “fight” is part of the routine. I clap loud and sing (annoyingly) “It’s Time to Rise and Shine… and give God the glory-glory.” Then we engage in a tug-of-war with her blanket, and she wins. Later I help her in the washroom, I help her clean and brush her teeth and get dressed. For us, it is work. And all of it involves some fight.

There will be countless moments this like in a day, month, year, even lifetime. This morning I remember it’s something that just we share, this taking care, this striving and fighting just to do the day.

We’ve shared it since the beginning.

I can still see her, newly born, spiky black hair and big grey eyes. I’d laid her in my hospital bed after everyone had gone home. Her father was away fighting in the war. “It’s you and me, girl. Just you and me.”

She’s eleven now and wants to do more, but her body doesn’t always work the way it should. So the glass shatters and the apple juice spills on the table, her plate of wild rice-ketchup-and mayo concoction goes flying across the room. On hands and knees I clean. She efficiently wipes ketchup on the one pair of acceptable pants and in her clean hair.

She leans on me with every step, we body-walk into the world.

Sometimes it seems she needs help with so many, many things.

Sometimes I feel helpless to help her.

But I trust that she is helped.

Tonight I plop down on the couch next to her. Quietly, unexpectedly she gets my glasses and pushes them, upside down, onto my face. My shirt is somehow hiked up over my belly – I mean, my six-pack abs – and I’m too tired to care. She reaches out and gently pulls down my shirt. She does it with the sense of order that she does most everything.

But her tenderness goes into my heart. Without a sound she communicates, I got you, Mommy.

Joy invigorates, and I laugh. That I would be so perfectly cared for by the one I care for.

It’s one of those rare, precious moments that a word is not just in her heart and head, but in her mouth, spontaneous and clear. I already know the answer.

“Rhema, do you love me?”


The Lord is my strength and my shield; in Him my heart trusts, and I am helped. ~Psalm 28:7

Going with us

A routine doctor’s appointment for Rhema these days is anything but. She experiences so much anxiety about hospitals and medical offices that I’ve had trouble just getting her into the building, and we’ve had to cancel appointments. Earlier this year a doctor met with me in the parking lot because Rhema became so overwhelmed. Recently that same doctor conducted an appointment at Rhema’s school – a place where she feels comfortable, safe and supported. I am still amazed and grateful that this doctor was willing to think outside the box and do whatever was necessary to help my girl be ok.

But my gratitude doesn’t stop there. Every day for months Rhema’s teachers and our school nurse have been taking her into a medical office at school. They work on taking off shoes and standing on the scale and getting height and vitals and sitting on the examination table. These things have always been hard for Rhema to manage, lately they’ve been pretty much impossible. Even when she had her appointment at school her heart was pounding out of her chest she was so nervous. But they practice at school every day.

Today she has an appointment with a new doctor at a new facility. New = unfamiliar = anxiety. Every aspect of it will be hard – getting through the doors, sitting in the waiting room (a coughing child could trigger an upset), walking into the examination room, the waiting, staying in the examination room, the appointment itself… she’s scheduled to receive 2 injections.

I don’t know how it’s going to go.

But… but. She’s been practicing.

And at the very least she knows that she’s not alone.

Two of her teachers are going with us. To help her. To help me.

Not enough can be said for how wonderfully and completely people have come alongside us and supported and loved my sweet girl. They go with us, all in, on this journey.

All I can say is thank you again and again to every one of you. You know who you are. And I hope you know how Rhema loves you, how you inspire her.

(Video is an RPM session Rhema and I did last night. The video quality is not so great, but we are talking about going to the doctor. The fact that she is answering questions by spelling answers is an incredible accomplishment, something I could not have imagined a year ago).


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Rhema in 2012 after she wrote her name.

We’ve been practicing RPM and studying Moses in the book of Exodus for months now.

A couple weeks ago I posted this on Rhemashope Facebook page:

We’re at the point where the people have escaped Egypt, they are at the edge of the desert and they don’t know the way… they don’t know how to go on. But again there’s the promise from God to Moses and to the people: I am with you.

Rhema practiced spelling the word PROMISE.

So I wrote God’s promise on paper, and she spelled it on the letterboard:

Letter by deliberate letter, we believe more and more. He’s spelling it out for us, inscribing it on our hearts.


Last night we read how the Israelites were trapped at the edge of the wilderness, with mountains on one side, the Sea in front of them, and Pharoah and his army with 600 chariots closing in on them. God caused strong winds to blow that parted the Red Sea and the people walked across on dry land to safety. Our Storybook Bible described it like this: When there had been no way, God made a way.

It’s good to remember the presence and faithfulness of God in seasons past… when we did not know the way. A friend once wrote: “Remember God. Remember him well. Remember where you’ve come from, where you’ve been, and where you’re headed. Remember how he’s been there each and every time. He’s in it all—past, present, and future, and his faithfulness never ends.”

I said to Rhema, “After Daddy and I got married we wanted to have a baby. But for some reason it was hard for me to get pregnant. I wondered if it would ever happen. And then one day after years of trying I found out that there was a precious life growing inside me. I was so happy. It was you! God made a way.

And then Daddy had go away to war for a year just before you were born… we were stationed in Germany and I wondered how we’d do it. But God showed us the way.

And I’ll never forget the time we needed to get you into a special school as soon as possible. The school had a five year waiting list. You got in in three months! God made a way for us.”

(I find myself telling her things I’ve never told her before. Or, perhaps I did tell her in the past, but our conversations are different now. I now know they are not one-sided. It’s awesome (so awesome!) to really be able to talk with my girl and believe she understands.)

Then I asked her something. And I don’t know if I was messing things up by asking such an open ended question at this stage, but there was no turning back. I held up the stencil board. “So… what do think about when you think of God making a way? Just one word is fine.”

I don’t think it was coincidence, the word she spelled. We’d practiced it once or twice several weeks before, but she had not attempted it since.

She spelled R H E M A.

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July 2012


“Well, no, I couldn’t think of one thing I would rather waste my time on than sitting here with you.”
~Every Minute, Sara Groves


Brandon was packed as usual and ready for his work week in NYC. I came in to say goodbye the night before. Because I am not conversational at 4 in the morning when he heads for the airport.

“Gimme a hug.”

He hugged me and didn’t let go.

After a few moments I tried to break free, but his arms were too strong.

Oh ok. A game.

I patted him on the shoulder patronizingly and put on my Mommy voice: “All done.”

I was teasing, I didn’t mind. And I am always, always too worried about time. How long had it been since we just rested in an embrace?

When I thought we were done, he quickly whipped my arm across his shoulder and around his neck and held my hand captive. I laughed. It was a Rhema move. She has this way of getting you into a Jiu-Jitsu armlock and you’re pretty much at her mercy. When we walk, when we sit, at home, in public, wherever – my arm is usually locked in position over her right shoulder.

I think it makes her feel safe. I think it’s her way of keeping me close.

Lately it seems more than ever Rhema wants us to just be. With her. It forces us to slow down, and I try to remind myself of how awesome it is that she wants this and is seeking it out. Giving her special time and attention means sitting with her while she listens to her favorite songs or plays on her iPad. It means driving, just driving, in the car together. It means a tickle fest. It means hooking pinky fingers long after you’ve tucked her in.

And if you try to leave… well, then the ninja armlock from a warrior girl.

There’s an old Sara Groves song that resonates with me deeply because it reminds me of precious friendships I’ve shared and missed… and times with family I’ll never forget.

I am long on staying. I am slow to leave. Especially when it comes to you my friend…

And I wish all the people I love the most could gather in one place and know each other and love each other well….

And at the risk of wearing out my welcome, At the risk of self-discovery,

I’ll take every moment and every minute that you’ll give me.

Tonight we stole time and my Brandon took extra moments to hold me and be silly. Thank you, faithful love. I’m so glad our arms are locked.

And my Hope, already eight, kind and funny and amazing… she still wants to hold my hand, play with my hair, and giggle in my ear. Oh darling, I will take it. Eight or eighty-eight, I love nothing more than holding your sweet hand in mine. Can you stay forever?

And my Rhema, it seems new, this being jealous for my attention. Our bond is deeper somehow, like she’s shared a secret. Slowly, wondrously blooming, she is an exquisite flower. I’ll try not to rush, dear girl. I’ll take every moment. Every smile, every connection, every sweet sound. Every moment and every minute that you’ll give me.

My hope

When Hope was just a toddler, I wrote the following:

This girl is only 1.5 years old, but she has BIG personality. She is expansive, full of life, rarely shy, always chattering away to family and friends, doggies and cars that pass by. She never acts like she’s the new kid on the block, even though she has only been on the earth a short time. She has the wonderful ability to lighten the mood wherever she goes; unfazed by chaos, she will greet you with a grin so wide that her eyes squeeze shut. She is the merriment of my life.

Hope’s nature helps me understand what it means to “abound in hope.” Abound can mean to “overflow” or “exist in great quantities, a surplus.” When I gave my heart to Christ, He gave me a hope that no matter what happens in my life, I will one day see His glory and live with Him. I know no greater hope. But I only just realized that this kind of hope is one that spawns even *more* hope. I picture hope bursting at the seams, running over, uncontainable. Where there is progress and good news, there is hope. Where there is regression and sorrow, there is still more hope. Hope is plenteous; it never runs out.

…I want to exude this kind of Hope hope. God is the God of hope.


At age eight, she still abounds in hope and fills my heart everyday.

Recently she made a “Stress Pocket” for me and told me to take it to work. She explained that I could pull a card from it whenever I felt the need. I asked her where she came up with such an idea. I thought perhaps our friend Katie had told her about her birthday gift of special cards to her mother. Hope just smiled and said, “I thought of it myself. And I did it one-handed. Haha.” (She broke her wrist a few weeks ago).

I put the Stress Pocket on my desk at work and forgot about it… until one day last week it caught my eye.


I pulled out the instructions…


{This is your stress bag. When you are feeling stressed pick a card (any card) and read it. Hopefuly, you will be encouraged. Your done!}

So I pulled out a card:


{Cast all your cares and anxitey on him, because he cares for you.}

I could have dissolved into a puddle right there on the spot. My girl was ministering to me, not with her own words but with the ancient words – God’s Words – that alone have power to change my heart, lift my soul, spur me on. Even at a young age, she knows these Words, she’s proved them, and they are spirit and life. How I desperately needed to remember and believe that simply He cares for me.

I didn’t know if I was allowed to pick another card, but I couldn’t resist. I laughed when the next card I pulled had hearts and smiley faces and said, “Pick again.”

This was getting fun.


{“Commit to the Lord whatever you do and your plans will succeed.”}

Over the past few days I have pulled more cards and each one is a treasure.


{“Fear not for I am with you.”}


{“do not worry about anything instead pray about every thing.”}


{“consider it pure joy whenever yo face trials of meany kinds because you know that the testing of your faith developes persevearance.”}


Thank you, dear Hope. How you have overflowed my days with love, laughter, joy, and sweet hope… words can never tell what a gift you are to us all. I am blessed beyond measure to be your mommy.

Doing something

We have many rituals, many little things we do the same way every day.

From the way she makes me sit on the stool next to her in the bathroom to where and how she eats, walks, sits, comes and goes – everything has a pattern and must be done in a particular way.

Our routines around RPM (Rapid Prompting Method) practice are quite established now. Terre, our therapist extraordinaire, comes on Saturday mornings and she and Rhema have their own way of working together.

When it’s time for a session with me, she gets up and heads down to the basement. She settles into her broken-down arm chair and hands me the remote. She knows I won’t turn on the TV, but handing the remote to me anyway is part of the process.

I read a story or do a math lesson. She scribbles on paper. I write words and numbers, hold up the stencil board and prompt her to stick her pencil through the letters. We “talk” about it all… how Moses persevered, how Leah found beauty and worth in God’s eyes, and how the yellow in Joseph’s coat must have been brilliant.

At the end she hands me the remote again and pulls me to sit in the broken-down chair with her. She wraps my arm around her and pulls the table in close as if to tuck us in. Silently we sit and watch the same old nursery rhymes. Together. It what we do.

Sometimes I think that through our RPM practice we’re finding a new pathway to each other through a complicated maze. A place where I get a glimpse of the more she has to share, and she discovers that she can indeed share it and be heard. Other times, try as we might there’s no making sense of that board of 26 letters. We’re looking at each other across a great divide. Pages and pages of written on/scribbled on paper like our own Morse code litter the table, the floor, the room.

Nauseating, deep discouragement and panic set in… will we ever make it? Will we find the way again?

I dare to pick up the book again – the Jesus Storybook Bible. Joseph, the dreamer, has been sold into slavery in Egypt. It seems all his big plans have been cruelly ruined. I read to her, to me, “But God had a magnificent dream for Joseph’s life and even when it looked like everything had gone wrong, God would use it all to help make the dream come true. God would use everything that was happening to Joseph to do something good.”

And so the story goes…

But God had a magnificent dream for Rhema’s life and even when it looked like everything had gone wrong, God would use it all to help make the dream come true. God would use everything that was happening to Rhema to do something good…

Take heart.

It’s doing something. Working something.

I don’t know what the “gone wrong” looks like in your space, but I know that nothing is wasted in His hands.

When Rhema was a baby I began quoting Romans 10:8-9 to her as I put her to bed. It’s another ritual – more for me than for her, I think. (And now, Hope too, requires I say the verse to her at bedtime as well). If I’m not there to put her to bed, I slip into her room after she’s asleep and whisper that verse. In the past I’ve written it on her bedroom door.

“Rhema, the Word is near you; it is in your mouth…” I touch her lips.

“…and in your heart…” I trace a heart on her chest.

And one day out of the blue, when she was five years old, she said words in her verse. ‘Mouth’ and ‘heart’ and ‘saved’. I hadn’t known she was listening or remembering or even caring. But the words had made their way into her heart and they’ve never left.

Our many feeble attempts, our messes of paper, pencils, stories, numbers and letters. Our never ending, seemingly meaningless routines. Our long days of trying and praying and hoping. I can’t always see it, but I have to believe. It’s doing something good.