Just as we are

When the flyer about the Spring Fling dance came home in Rhema’s backpack I was momentarily confused. Rhema? A school dance? Somewhere along the way I’d tucked that one in my back-of-the-closet suitcase of Dreams Deferred.

And even as my mind raced with excitement I was reluctant to pull out that old suitcase and dust off that dream. Because then I might go crazy and start hoping and believing and letting other dreams and expectations out. Pace yourself, girl, I warned. And then I ran to the computer to search for a new dress for Rhema.

I wanted it to be perfect. I spent hours looking for a dress that she would be comfortable in and dreamed up ways to do her hair. The day of the dance I tried three different outfits and she rejected them all, throwing them off moments after I put them on. She refused to let me style her hair.

This was not how it was supposed to go. I envisioned mother-daughter bonding time as I readied her for her big night, not shrieks and a tug-of-war! She went to the dance in a faded, old dress with some spaghetti sauce on the front and her usual fuzzy ponytail.

I was still in a huff on the drive over to the school. My friend Emily’s words came to mind: “It’s time to throw out my ideas of what I thought life would be, should be, and let joy fill up those brand-new vacancies.” Ok God, I prayed, I’m opening wide my suitcase of dreams and expectations and once again I’m giving them all to you. I know your dreams and plans for my children are so much better than mine.

When we arrived, all of the school staff was waiting for us at the door, and my heart filled and nearly burst with gratitude. This is so much more than a job to them. How they give, how they love and care for our children. Just as they are.

They take her in her spaghetti sauce dress with bite marks on her arms, slime on her fingers and chocolate ice cream on her face, and they celebrate her. They put a pinwheel in her hand, a circle of flowers on her head and take pictures like she’s an A-lister on the red carpet. They help her with every step.

Just like this. I wait for you and I wait for them. Just like this, I love you. I love them.” I can hear Him whisper it.

FullSizeRender

Rhema at the Spring Fling dance.

Rhema had one-on-one staff with her throughout the night (thanks Megan!), and when we picked her up she was so giggly and HAPPY.

She played, wore a flower hat, and devoured ice cream, marshmallows and sprinkles.

r_m_dance

And she danced.

I wanted it to be perfect. It was. She was.

Thank you, thank you to Rhema’s school for a beautiful night.

Ask me about the glory

Rhema’s coming upon another birthday. Brandon and I were recently reflecting on the adventures life with our precious girl has brought us. We recounted some of the stories aloud, others we just shook our head smiled – no words necessary.

Remember the early years? The worrying, wondering and waiting? The silence. Remember when her brain continuously seized forty times a minute.

eeg

Oh, she was such a little tornado. It took every ounce of energy to keep her safe. The most tired days of life. Remember how much she loved the big windows in the old house? She would climb up and stand in that window all night long. There were those old, double-hung rope and pulley windows with stained blue panes. The ropes were broken, and every night she would pull down on the ropes. I can still hear the counterweight inside the frame screech up to the top and then come crashing down. She liked the sound, and she particularly liked to hear it over and over in the middle of the night.

And then there was the poop art. It seemed I was cleaning her and scrubbing the floors and walls every day. I never thought it would end, I really didn’t. But it did. And now she’s toilet trained. (!)

We can never forget the severe lead poisoning that came from eating paint off those walls and windows. We can never forget that dark period, and the many months of chelation treatment. But she made it. We made it.

How about the hair-pulling and swallowing and the resulting gastro problems? Another struggle I was sure would never end – even when we cut her hair short. But now she is healthy again, and I can brush her curls into a ponytail.

IMG_0557

Those days are behind us and now we face new and different challenges.

For I consider the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. ~Romans 8:18

A couple weeks ago our pastor said something that has stuck with me. He said there are bumper stickers that say, “Ask me about my grandchildren.” But you never see stickers that say “Ask me about my daughter’s labor.” Yet in life we can be so focused on the labor… on the hardship… we forget about the glory that’s coming. The challenge is to say, in whatever circumstance, Ask me about the glory.

I think it has something to do with searching for the secret of contentment that spills into joy and thankfulness. Lord, I won’t compare. I won’t count any losses today. I won’t take this, all I have, for granted. Thank you, thank you, thank you Lord. There’s God-glory in that.

The magnificence is seeing God do what he does – make beauty out of ashes and the impossible possible, sing a song without words, stretch faithfulness to the sky.

The hope of glory to come is all in Him. One day when we will be disability-free, pain –free, sin-and-sadness free. As my friend Lianna wrote years ago: ‘I cried when I imagined Rhema, who doesn’t necessarily respond when you call her name, rising up at Jesus’ voice calling her. I pictured her hearing him and responding, unhindered by autism. Autism and epilepsy will be non-factors.’  She’ll lift her head and dance upon gold-paved streets. She will open her mouth and sing praises to her Lord forever.

That glory.

Finding a way

I woke up this morning
With this feeling inside me that I can’t explain
Like a weight that I’ve carried
Been carried away, away
But I know something is coming
I don’t know what it is
But I know it’s amazing
My time is coming
And I’ll find my way out of this longest drought

It feels like today
I know it feels like today I’m sure
Feels like today
~Rascal Flatts, Feels Like Today

Several months ago I watched an interview with a young man named Ido who is autistic and non-speaking. In the video, he is asked about learning to read and type: “How did you learn how to type?”

Letter by letter Ido slowly, purposefully types the words: I saw letters would liberate me from my isolation.

{To watch the video, go to http://idoinautismland.com/ . In the sidebar: “Ido Answers FAQ (1/2) and (2/2)}

I’ve thought about his statement on a daily basis.

We’ve never doubted for a moment that Rhema is a deeply thoughtful, intelligent, amazing young girl with so much to share with us. We have, however, struggled to believe that she’d ever find her voice. As she grows older I sense a restlessness in her and I feel it, too… this urgency to free the words inside. To liberate her from the isolation. She longs to be understood, to be heard.

Every day we pray that God will make a way. Recently we’ve been telling her not to give up. We promise that we will not stop working to give her a variety of tools that will help her communicate. Saying these things out loud to her has increased my own faith. When I talk to her, everything I see with my eyes tells me she’s not listening, not understanding, not even interested. By now I know there is so much more than meets the eye with my Rhema. She has taught me more than anyone the meaning of walking by faith and not by sight.

I’m thankful for people like my friend Jess who remind me to keep believing. The following is a text conversation we had a while back…

Jess: I was just talking to my friend (who is non speaking and types to communicate) about kids still searching for their method of communication. She wrote… Words don’t age before we can type them. They are always ready, for when we are.

Me: Thanks Jess. That’s comforting. I just worry/wonder what if they never find their method of communication. What happens to all those ready words?

Jess: I hear you 100%. I can only imagine the frustration. You will help her find the way. I truly have no doubt. And that doesn’t happen a lot. I have faith. She’s writing her name. That was unthinkable. So what is unthinkable now? Isn’t.

In the coming months we’ll be trying some new interventions that I trust are really going to help us.

Y’all, I can hardly wait.

Carly Fleischmann, non-verbal autistic teen and author

Carly Fleischmann, non-verbal autistic teen and author

The constant

“They got it back.” I smile at Brandon in amazement. “They got it back!”

Rhema’s words. Her handful of words… “Hi, bye, yeah, help, Ho (for Hope).” She’d lost them. Or somehow they’d become inaccessible to her. When she began learning to use the communication app on her iPad, her ability to speak those words seemed to vanish, for a solid year at least. A few months age we expressed our concerns to her teachers, and it was eerily familiar to when she was 15 months old and I worried and took her to the doctor: “She stopped saying ‘Hi.’ I don’t know what happened. She stopped saying ‘Hi.’”

Rhema’s teachers, being the incredible teachers they are, worked so hard with her to get those precious words back.

And all throughout this weekend we heard her words! I could cry because we’ve known the heartbreak of working so hard and long for something, and then somehow it slips away. And we’ve known the glory-strength God gives to keep moving forward. And we’ve known the joy of finding what we lost. I’m learning on this journey with Rhema not to take any of it for granted, to treasure every little-big gift.

Less than a year ago she competed in the Special Olympics Summer Games, and with the help of her beloved coach Shea, she won three medals in gymnastics. It was a day I will cherish always.

Then Shea went away to college. Special Olympics took a break during the summer and winter. And now it’s like we’ve taken five years of steps back, back at the very beginning for my girl who needs so much consistency – every day consistency – to maintain skills. Today we’re just trying to help her cope with being in the gym again. Desire and motivation seems to have flown the coop. Her feet no longer run, skip, jump or walk on the beam as they once did.

I look at empty hands, the spaces between my fingers.

Skills gained and skills lost.

And the one constant, my darling, the one thing you cannot lose, is our love.

“I heard a song today that made me think of you. It’s based on a Bible verse that says nothing can separate us from God’s great love for us. Not anything in this world! Not the present or the future, not height nor depth, not the worst sins, not hardship, not pain, not sorrow, not even death can do it. That means so much to me, Rhema, when I think about my life and things I’ve done. That He loves me still, anyway, even though.

I can’t even make sense of that kind of faithful, unending love. But God gave me a taste of it when He gave me to you and Hope.

Because nothing can separate you from my love. Not silence or distance. Not aggressions and regressions. Not flopping or bolting. Not lost opportunities. Not stares in public. Not broken things and broken dreams, not heartache. Not weakness or failure now or ever. Not the present or the future. Not highs or lows. Nothing can take you from my love.”

~Adapted from a December 2011 letter, “I Belong to You.”

My one defense

It’s one of those times when we look up to find Rhema quietly weeping. We don’t know what brings on her sad tears. But every time, we drop everything, Hope and I. We swoop down on her holding her hands if she’ll let us, stroking her hair, sheltering her in love.

She cries.

His faithfulness will be your shield, I read it this week.

Yes, there are days even weeks and months when so much hurt and painful information crowds around like enemies of the soul. Broken bodies, fragile hearts, temptations, what I can’t undo, disappointment one every side – they roar their mockery.

Can we be helped?

In the battle I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

So bring the arrows, bring the swords. Bring the peace that passes understanding. When it’s over bring the victory song. My Glory, my head-lifter, my one defense.

Faithful then, faithful now, He is ever faithful. He lifts it up like a shield.

Safe.

near

(Quotes from Psalm 3, Psalm 91).

Go with me

Mothering Rhema causes me to hold tightly to small moments. Things that may seem inconsequential at first blush I treasure and think on long after the moment has passed. There’s this thing she does when she’s gone on ahead of me… or Brandon is taking her to school or she’s being called out of a room. She stops and looks back for me. And since words are not at her disposal, she comes and takes my hand.

There was a time I wanted her to demonstrate that she set me apart as her momma. I know she did, but she did not show it in a way that I understood. No calling my name. No trouble separating from me. No greeting when I picked her up after a day at school, no change of expression on her face. No running to me when she skinned her knee.

It’s been ten years in the making, but now she looks back for me.

C’mon, Mommy.”

That’s what my heart hears.

I am thrilled that she wants me to go and a little scared, too, in the way that special needs moms get scared. Because it’s me she needs. She needs me! I want her to know she always has me. That my hand will be there when she reaches.

I caught a snippet of Beyonce singing “Take My Hand, Precious Lord” at the Grammys the other night. I grew up listening to my mother sing that song with visions in my head of a weary Rosa Parks getting on that bus. And old Mother Whatley used to sing it in church with more heart than Beyonce ever could, in my humble opinion.

But it reminded me of the need for the abiding presence of God in our every moment. I confess I am helpless without Him. I need His hand to hold me, His voice to guide me, His grace to heal me. Even still I am “prone to wander, prone to leave the God I love…” without so much as a look back. But He never fails. He waits for us to return, to set Him apart as Father truly. To say, I will go, but only if you go with me.

 

So teach my song to rise to You
When temptation comes my way
And when I cannot stand I’ll fall on You
Jesus, You’re my hope and stay
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You

~”Lord, I Need You” Matt Maher

socksandals

Because she asked

For us, autism means that life is a series of workarounds. The grandparents are in town and we wanted to take them to the Museum of Science. It’s one of Hope’s favorite places… and something akin to torture for Rhema. I suppose leaving Rhema home with a sitter was an option but it’s not one she or I could stomach. I never want her to feel that she’s been left behind. So we took the train because Rhema and Hope love the train. We split up at North Station in the middle of a snowstorm: Brandon, Hope and the grandparents went to the museum and Rhema and I went off in search of the best chicken lo mein and cookies in the city.

I was happy to spend the day holding her hand on a snowy adventure, just the two of us. One thing I know about my girl: she’s not so interested in the destination but she very much enjoys the going, the process of getting there, wherever there is. (So it goes with opening presents. I was thrilled when she finally got into unwrapping gifts. Nowadays she’s happy to rip off the paper, but once that’s done the thrill is gone. She tosses the gift aside without so much as a glance!)

We settled on a food court in a small mall and ordered her favorite chicken lo mein.

IMG_2720

I was contentedly watching her eat when she reached into my bag, brought out her iPad and tapped the “I want” symbol and then the “ketchup” symbol. “I want ketchup.” So simple. So earth shaking. Of course! Of course she wants ketchup. My girl wants ketchup! I cannot put into words how powerful it is when she communicates with me in this way. I want to leap and dance and kiss her face and trip over myself to get her what she wants. Just because she asked.

I grabbed her hand and we went over to McDonalds and asked the kid at the counter for ketchup. And he did. He gave us ten ketchup packets. Just because she asked.

After the ketchup-with-a-little-lo-mein lunch, we trudged through snow and ice to get to a Boston bakery selling Deflate-gate football cookies. We waited in a long line only to discover that they had sold out of the cookies making fun of the deflated football scandal. We got some Patriots jersey cookie instead. Of which I ate two. To show my support. Yeah.

IMG_2722

Then we rode the subway to the end of the line and back. I think she would have been content doing that all afternoon, rocking in her seat and humming softly. We caught the train home and as glorious creation sped by and we stared at icy rain on the windows I got to remind myself of this: “Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you then, imperfect as you are, know how to give good gifts to your children, how much more will your Father in Heaven give good things to those who ask Him!”

And this, something Brandon once wrote when he was deployed to Iraq and wanted more than anything just to be able to take Rhema swimming: I’m comforted because I know with all that this life has for us in terms of challenges or desires or whatever, I WANT Rhema to go swimming… as her father, I WANT nothing more than to take her myself. Our heavenly Father sees us looking through the window at life, and WANTS good things for us. Just like I see Rhema looking and innocently desiring to jump in that water, so too He watches us and CARES about our desires. I have to TRUST Him that He will give us what we need and, when it is good for us, He truly wants us to have what we desire.”

And this: “Now to Him who is able to do far more abundantly beyond all that we ask or think…” Eph. 3:20

 

IMG_0496