.

I was born on a church pew.

Not really. But since I was little my parents have been involved in religious ministry – from hosting Bible studies in our home in Panama to pastoring a church for the past 25 years. I’m forever grateful to my parents for the seeds of faith they planted and watered in me.

Things got interesting one Sunday during the altar call. I was surprised to see my sister crying and walking to the front of church to receive Jesus. Not wanting to be outdone and risk appearing more sinful than my twin, I followed her, produced some tears and prayed to accept Jesus Christ into my heart. I was eight years old.

When the pastor baptized me I flailed, and he ended up dunking me twice. He concluded I’d be a good Baptist. My sister concluded I needed all the extra dunking I could get.

There were many, many times after that day I would pray the prayer repeatedly, just in case. “Jesus, I believe in You! I believe You died on the cross and rose again. Please forgive my sins, and come into my heart. I accept You as my Lord and Savior. Thank you for saving me. Amen.”

Growing up as a preacher’s daughter, my attendance was mandatory at Sunday School and VBS and youth group meetings. But I went gladly. Over the years I’d seen people lost, broken, grieving, angry, empty – and I saw them changed (not necessarily their circumstances, but their lives). I could not explain it. But I had no doubt in the power of God to transform, to give Life and hope.

In college, I came to love the words in my Bible. Those words became my lifeline when I lived in Ethiopia.

Marriage and motherhood have stretched, challenged, wrecked and re-built my faith more than anything ever could.

‘Till sin be bitter, Christ is not sweet. I’ve long understood the doctrine of grace, and I’ve been encouraged by it as I’ve seen it demonstrated in the lives of others. But in recent years I experienced the way of grace in my own life like never before. I fell. I fell into a horrible pit, not only hurting myself but others around me. When I saw myself apart from God’s grace, I found the ugliest heart and guilt so terrible, I could have died. But then the very nature of Christ reached through friends, through my husband, to love me. Amazing grace, I will never forget.

Some friends/readers have admired my faith, so here’s my story. I am utterly unfaithful, and God has been ever faithful to me. I can tell you I’m like the father whose son had no speech, “Lord, I believe. Help my unbelief!” I can tell you I’m learning that “without faith, it is impossible to please God”, and all I want is to please Him. I can tell you that I love much because I have been forgiven much. I can tell you that I still pray with eight year-old faith: Jesus, I believe in You! Thank you for saving me. Again and again. Amen.

.

Sweet baby.

I was sad she was sick, but overjoyed at the excuse to take off from work and spend days at home, just me and my girl. It’s been a year since I went back to work, and I enjoy my job. But I still struggle (suspect I always will) with balancing work and home. When the day is done, that outbound train can’t chug fast enough – all I want is to see them, hug them, care for them, make sure all is well.

Busy tricks me – the busier I am, the more valuable I am. Or so I think. Sometimes in all the running, I wonder why I’m running from me?

Hope’s illness forced me to slow down, and the days to be still were good medicine.

“Be still and know that I am God…” Psalm 46:10

We laid on the couch and watched four Strawberry Shortcake episodes. Twice. We read books, colored and played music. I folded *and put away* laundry. I prayed in the closet. I made soup, administered meds and nebulizer treatments around the clock. I kissed her warm head every hour and savored every long minute. She let me baby her, and I love mothering her – hands down the best feeling, the best job I’ve ever had.

It just felt so good to be home. Doing the small, mundane, not-so-glorious things that I know have lasting significance. I’m a decent cook and a horrible housekeeper, but I get to spend my life serving my family, and that is an unbelievable gift.

“Mommy, what color do you get when you mix black and white?”

“Gray.”

It’s a question she asks almost daily – one day it’s what color do you get when you mix red and blue, another day it’s green and yellow, next it’s purple and orange. We’ve learned to answer the question in our sleep.

Later she presents me with a picture she’s made of herself.

“Nice, Hope. But why are you gray?”

She smiles sweetly, “Because you’re black, as they call it. And Daddy’s white.”

“As they call it??”

“And so… I’m gray!”

Oh my goodness, this kid.

“Har har har.”

Thank you, Lord, she is well.

We hang her picture, and I wish you could hear her laugh.

The girls and I were downstairs loading on the winter weather gear, preparing to take Rhema to school. I grabbed a new red hat for myself, stooped down, and made a funny face at Hope. We laughed extra long because being around Hope makes you laugh extra long.

Rhema was turned away from us, as usual, humming, seemingly oblivious.

“Rhema. Look at me in my silly red hat.”

Child does not respond to name. I remember the assessments as if it were yesterday. The people from Early Intervention in my living room, calling her name, trying to get her attention… but she was a million worlds away. The only way to get her to notice anything – even a highly desired object – was to wave it directly in front of her eyes.  

Lack of eye contact. God gave me a child with the most incredible brown eyes, and for years I hardly ever saw them straight on.

Zero joint attention. I remember standing at a window, jumping and waving and chanting her name while she and the babysitter stood right there, on the other side. The babysitter said “Mommy’s here!” and pointed at me. She never looked. She could not look at the babysitter and follow her gaze to me.  

Poor receptive language. “Word deafness” possibly due to seizure activity in the Wernicke’s area and Broca’s area of the brain. She seemed to have absolutely no understanding of spoken language.

Hours upon hours, days and days and years of work and therapy and tears and prayers. And we are here.

On this day she turns around. She looks at me. She lets me see the magnificent smile spread across her face. She walks over to me and ever so lightly touches my head.

(Pause with me now. This heart was once broken. Amazingly God mends it everyday, more and more. Sometimes He fills it with joy and gratitude to bursting.)

Then she turns away and resumes her humming like it’s nothing. But it’s not nothing.

On this autism journey, I’ve always focused on the present, tried not to think too much of the future – good or bad. So I didn’t really imagine this... and it’s happening every day now. When I can actually say something to my girl and…

She responds. Appropriately. She looks. She sees what I see. She understands.

 .

Bless the Lord, O my soul: and all that is within me, bless his holy name! Bless the Lord, O my soul, and forget not all his benefits! ~Ps. 103:1-2 (exclamation points added by me for emphasis)

My mouth shall speak of wisdom; and the meditation of my heart shall be of understanding ~Ps. 49:3

Gena, My mother!, Baby Michaela, Jenee, me, Chelli

My sisters and our families were all together this past week.

We filled the time partying, eating, baby dedicating, football watching, church-going, and eating some more.

Chelli and her husband Darren were highschool sweethearts and when they come home and the Palmers and the Roys get together, it’s a bona fide good time.  

Our family boasts about every shade of human color on the spectrum – we’ve got Black, White, German, Polish, Panamanian, Scottish, Puerto Rican (hey Joel!), and Lord knows what else, up in the mix.

I look at all our children, and I am amazed by the creative handiwork of God. How we look so alike and so different. How Brandon says “Ant” and I say “Aunt”, and we are all connected. How there’s a piece of me in her, her, and him, and a piece of them in me. How we love. How God has not only blended us through marriage but through a saving faith in Christ; we are brothers and sisters. Thank you, Lord.

.

I think this weekend we got a taste of what heaven is like… when all God’s children get together, what a day of rejoicing it will be.

I think this weekend we were the best of MLK’s imagination. 

.

.

We live the dream, and it really is beautiful.

Yes, this is our autism.

We’ve made up our own names for some behaviors.

• Blind Girl routine – when she refused to open her eyes and walked around crashing into things. (This one, quite troublesome, lasted on and off for months.)
• Autism Bumper Bandit phase in which she would rip magnets off cars and break them into tiny pieces.
• Mommy Be Quiet! – A (thankfully) short period in which she screamed/tantrummed if I spoke. At all.
• The Squat Walk – a phase in which she would take a few steps, drop and squat, take a few steps, drop and squat, etc. We spent a lot of time in parking lots, and fortunately this did not occur simultaneously with the Autism Bumper Bandit phase!

The latest behavior du jour? Shirt sucking/chewing/eating.

I’ve been saying to her what my mom used to say to me when I inhaled my food, “Girl, you make it look like I don’t feed you!”

When I discovered she’d lost a tooth the other day, the light bulb came on. Oooohhhhh. The sensation (or even pain) of the loose tooth caused her to gnaw her clothing! This theory was confirmed by her teachers who track many of her behaviors: the chart for mouthing showed a significant increase over the past few weeks… and then a sharp drop to zero as of two days ago.

Mystery solved! And with that, (sniff), we turn the page on the Eat the Shirt Off Your Back chapter.

So we lost our shirts this go round (ha!), not a big deal. But there are times when certain behaviors send us into crisis mode. These are the days when every little thing is hard – sleeping, eating, dressing, leaving the house, transitioning from one thing to the next. These are the days that break my heart, bring me to my knees.

And no matter what the behavior looks like, one thing remains. I wish I knew. How I wish I knew what goes on in her beautiful mind. I long with all my heart to have a real conversation with her. I have so many questions, so many things I want to know. What is your favorite color, really? What are you saying when you hum? What do you love and why? Why do you weep at night sometimes? What do you need from me? Sweet baby, does anything hurt?

“I want to trip inside your head,
spend the day there…
to hear the things you haven’t said
and see what you might see…”
~U2

It’s in a mother’s wiring to give her child what she needs. What do you do when you don’t know what that is??

A promise:  

“…For your Father knows what you need before you ask him.” Matt. 6:8

He knows. And knowing that He knows is a comfort somehow. The One who has the count of her every thick curl, collects tears in a bottle, painted her like sweet chai, named her and loved her before I knew her, knows. She is not a mystery to Him.

(So Lord, I need you. Teach me how to take care of my girls, and my husband, too. Give me better understanding, deeper love.)

“…For your Father knows what you need before you ask him.”

.

We made an interesting discovery today…

Brandon: Rhema, where’s your iTouch?

Rhema throws her head back and laughs and laughs.

Brandon: Um, not funny.

He finds her iTouch nearby and realizes that he’s being recorded with an app called Voice Memos.

He comes to me and we scroll through nearly 50 recordings that Rhema has taken.

There are several of her making her sing-songy sounds.

There is a conversation between Hope and our wonderful babysitter, Laura.

There’s a recording of a voice mail of her cousins singing Happy Birthday.

There is a snippet of conversation between me and the ER doctor last month. (Which boggles my mind because I remember Rhema sitting on the bed playing with her iTouch, but had no idea she was recording me.)

There’s water running,  TV in the background, Hope jabbering, Rhema humming, multiple conversations at the same time.

Brandon and I smile, thoroughly intrigued as we listen, it’s like hearing the sounds of life and home on replay, but for the first time.

And then he tilts his head, furrows his brow,

“Hey! Did you just call me a jerk?”

“Huh? Wha-? No. Noooooo.”

We laugh. (I really didn’t call him a jerk. Really! Just ask Rhema.)

That girl.

So often she seems to be walking on the edge of the world. Silent except for her humming and shrieking. With us, but not. And all this time she’s been recording life around her, and we did not know.

I wonder how often she plays back the recordings? I wonder what she hears - these voice memos in her life? Does she hear love and joy in our family? Does she hear frustration or impatience when I say her name? Does she hear complaining and backbiting or does she hear us building one another up?

As I listened, I heard her. Her sounds that are ever present and make up the background music of our days. All too often I stop hearing it, but I was reminded again to listen for her sweet song over us.

A couple years ago I proudly wrote a blog called Her Language and recorded her. She sounds much the same today.

She really is remarkable.

.

When I wake Hope in the morning she, with heavy eyes and outstretched arms, makes her daily demand.

“Hug.”

There’s an instinct in most children when they are hurt or frightened or sleepy or sad or happy to seek out the loving arms of a parent or grandparent.

For Rhema that impulse was absent for the first 7 years of her life. She was tactile defensive, and it seemed the only time I could get close to her was when she slept.

Even now she’s still learning. Often, it’s not natural for her to seek out a hug for comfort. Other times it’s inappropriate – she climbs into laps or embraces complete strangers.

But she comes. On her own.

And I always tell her thank you. Because I get to see her up close, have her near. Because I didn’t know if she’d ever come to me or learn to show – and receive – affection.

“Let us draw near with a true heart…” Hebrews 10:22

How many times I’ve held out my hands, saying Come? Waiting for her to trust me, to find her home in my arms and a healing kiss for the ache, rest. Willing her to know the embrace will end, but I will never let her go.

I see Him doing the same; Grace calling my name while I run circles.

I am aware of The Wall. In which the bricks of disappointment, the emptiness of life, anger toward God, loss, my guilt, my failings, my debt… have stacked high.

“Our meagre faith brings leanness into our souls; we do not open our mouths wide, though God has promised to fill them… Can we not hear him say “Come, my child, and trust me…I am worthy of thy fullest confidence, cast thy cares on me. Shake thyself from the dust of thy cares, and put on thy beautiful garments of joy.” ~Spurgeon

This year I dare to believe all I need is found in Him.

I drop my sword and raise my arms like my little girls do. ‘Out of my boundless sorrow and night, Jesus, I come. Into thy freedom, gladness and light, Jesus, I come to Thee. Out of my sickness and into Thy health. Out of my wanting and into Thy wealth. Out of myself and into Thyself, Jesus I come to Thee.’  

You have shattered the wall, You have made the Way.

Keep me here.

And draw me nearer still.

Well, it’s been a crappy start to the new year. =}

There are numerous studies that suggest gastrointestinal issues are more common in children with autism. The reasons for this are not all clear – a compromised immune system could be at play, sensory processing issues might be a factor, etc. – but one thing is clear: my girl’s had poop problems for years.

As a result I’ve become sort of a poop professional. (I certainly deserve an honorary advanced degree in poop clean-up). I love a good poop story, and it’s fitting I’m telling one as my first blog post of the year! I have lots of photos of poop art masterpieces – one which involves a toenail-painted bare foot (… the foot was mine, the poop was hers). And once I was so intrigued by my child’s poop that I wanted a doctor to see it so I saved it in a Ziploc bag and put it in the refrigerator. Too much?

From ages 2 to 4, she suffered with chronic diarrhea. The gluten-free, casein-free diet finally stopped the muddy rivers… and made toilet training possible.

For the past year she’s suffered from chronic constipation. We’ve tried a number of things – daily laxatives, suppositories, commode chants, to no avail.

Last month we ended up in the ER because she’d been unable to go for nearly three weeks. The poor child was walking around doubled over, and oral laxatives only caused her more stomach pain. After a hefty dose of magnesium citrate even failed to do the job, we turned to the enema as a last resort.

But there was no way on God’s green earth my autistic daughter with the strength of three linebackers was going to quietly lie still while I squirted warm liquid into her rectum. Even with my fit, Army-wartime-commander husband holding her down. Not happening.

So we ended up at the hospital. I felt like a failure, bringing her in, saying she needs an enema and I really don’t want her to have to go through this here in the hospital. But we can’t do it. Autism is too big for us tonight.

But the doctor assured me they see this a lot – ASD kids with serious constipation issues. I sighed at that – sometimes it seems as if nothing comes easy for our special children.  

They did x-rays, and my poor Rhema had quite the impaction. We waited while they concocted an enema just for her. It was Hope’s birthday, and we told her it was our quarterly Russell Family Field Trip to the ER. She was psyched.

Here's Rhema (unintentionally) in the perfect position. If only I had an enema at that very moment!

It was late and B took Hope home, so I was left to do the dirty work. Ultimately, it took 4 people to hold her down and administer the enema. Rhema was so frightened and upset;  she cried and cried. The hardest part was forcing her to hold it in for 5 minutes after the enema was in. When we released her, instead of running to the bathroom, she leaned over the side of the bed and cried.

As soon as the nurses left the room, Rhema stood up and I rubbed her back. I’m not sure what happened next but all of a sudden Rhema and I, the bed, the floor, the walls, and my backpack on the other side of the room were covered. It was like a volcano exploded and was showering chocolate lava.

I yelled, “Code Brown! Code!!! Brown!!!!!!!”

(Thanks Judith).

But no one came to our rescue. Rhema just cried and let it all out right there, and I was in such awe at the sheer volume, I did what any good mama would do. I took pictures. For the blog, I mean, her scrapbook.

We cleaned up, borrowed some clothes and danced out of there 10 20 pounds lighter.

 .

Rhema’s relief was short lived and her intestinal issues continue. Hopefully, we will see a new gastroenterologist soon. In the meantime, we cheer and high-five for words, good listening, completed puzzles, and poop. Any little poop is celebrated.

“And when ye see the south wind blow, ye say, there will be heat; and it cometh to pass.” Luke 12:55

Writing Dreams

This Dream Does Not Tarry

Writing – Froms Dreams to Reality

.

On the last day of school before the holiday break I carried in small gifts for the many teachers who give to Rhema (and to our family) day after day, year after year. Every year I bring in these gifts knowing they cannot begin to convey the depth of our love and gratitude for the people who teach and care for our girl so well.

So I was caught off guard when Rhema’s teacher, Heather, held out of beautifully wrapped gift to me.

She said that Rhema had a gift for us on Christmas, and I knew instantly it was not one that could be found in stores or ever put a price on.

The card was addressed to “Brandon, Jeneil and Hope”, and that alone kind of got to me. It said something to me about family somehow – that each one of us is important to Rhema and she is important to each of us.

Merry Christmas! Rhema has been working very hard with all her teachers to create this project for you. She wanted you to be surprised so these programs have not been on her data sheet. We are all very proud of her and working with her is a wonderful gift every day!

Love,

Rhema’s teachers

.

I wish I had the words to convey how meaningful and precious this gift is. At the same time, I know many of you know and rejoice with us. I’ll ramble on, but in so many ways the picture speaks for itself. 

So here it is.

This is a gift not just from Rhema, but also her many wonderful teachers. They quietly worked with her on every tedious stroke… all with the intention of blessing our socks off on Christmas. Yeah, that kind of got to me.

Rhema has been learning to write her name for the past two years. When she holds a crayon or pen, her first instinct is to scribble vigorously – it takes much focus and motivation for her to change course. She needs a lot of support and physical prompting to write her name, and even then it’s hit or miss.

But here, it’s perfect. I can’t stop looking at it.

We had no idea she could write or trace any other letters besides those in her name. But she wrote Dad, Hope, Mom and traced I Love You. !!!!!

I’d heard she’d been learning to draw stick figures, but never in my wildest dreams could I have imagined this. Hope’s stick figure has a crown. That kind of got to me, too. (And Hope was thrilled when she saw!)

We’ll hang it in a prominent place, and we’ll treasure it always. But for now I’m like a child by the Christmas tree, clutching a cherished present to my chest.

Every now and then I release it, lean back long enough to stare and be filled with wonder again.

In its reflection I see moments of days I’ll never forget. Sitting my pregnant self down in a small office while Rhema stimmed on a slinky, and a developmental psychologist gently confirmed everything I already knew. Autism. I would never see the woman again, but I remember her name, her eyes, her hair, her clothes, the pearls on her neck. I remember wondering why, why, why. Why my child?

I see us in the hospital room looking at images of her brain lit up with epileptic activity, and the meds not working. I remember wondering How? How can this be?

Then, I’m in an IEP meeting and they’re telling us about a stamp goal. ‘She’ll probably never learn to write, so she’ll need to learn to use a stamp with her name on it.’

And I had no idea of the divine conspiracy. That God would use what I thought to be such a tragedy to be my greatest source of blessing. To lead us to a community of friends and parents and teachers that we are so much the better for knowing. To teach us and help us see sweet, hard, beautiful things we otherwise might have missed.

(Blubbering now, any eloquence out the window). I’m just so grateful to Heather and all of Rhema’s teachers. I’m just so amazed by God and the way He heaps blessings on us. I’m just so proud of my little girl.

And I’m sure of it now every time I see her, her gifts, there’s even more than this to come.

She was attracted by the lights and the star and the ornaments… and the response she got when she shattered them. Wherever we went – friends’ homes, the doctor’s office, the mall – we would have to stand guard in front of the tree, lest it come crashing down.

But the past couple years she has decided to ignore the Christmas tree completely.

Like… Meh. I am not going to pay any attention to these crazy people putting a tree in a  house. Rearranging my living room and oohhing and ahhing and carrying on and putting stuff under it that nobody can play with and stuff on it that’s not even fruit. If I can’t climb it, jump on it, hide under it, spin it, or eat it, it’s of no use to me. Tree, shmree. Whatever people. 

This year we brought her over and showed her how to put a candy cane on the tree. She indulged us.

 She put all the candy canes on!

Oh, sweet progress!!! This was a first!

(Gotta love her style).

.

And she has ignored that old tree ever since.

We’ll take it.

.

And speaking of progress, here’s more:

.

Merry Christmas!!!