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

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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.

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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.

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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

 

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All ears and all heart

Life has been full, good, busy and unexpected and I did not mean to be away from here so long. Many times I’ve sat down to blog and only stared at a blank screen wondering where to begin.

So I’ll just start small and share a little update on the family. Brandon will officially retire from the Army next week! I met him almost 20 years ago and I’ve only always known him as a soldier. This is a big change for us, but a welcome one. He already has a new job lined up with a great company, and we are excited for this next chapter. Thinking back over the past years, gosh, we’ve had some hard times (and 3 deployments added for good measure), but somehow the whole thing’s been covered in grace. Like God took one of Rhema’s markers and colored his goodness all over our ugly, restoring to us things and years we thought we lost.

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The girls are doing so well. Hope continues to amaze me with her devotion to Rhema. It seems that from a small age, all on her own, she decided to be her sister’s best friend. She’s made it her aim and pleasure to love, protect and cheer her sister.

Recently Rhema became overwhelmed when we were dining out at a restaurant with extended family. Much to my dismay she scratched/hit Hope who was sitting next to her. Later Hope showed me the mark on her arm and we talked about what happened. Mainly I just listened in wonder as Hope explained to me that sometimes Rhema gets so overwhelmed she just doesn’t know what to do. I asked her how she felt when Rhema got upset in the restaurant and she said, “I just kept trying and trying to think about what could be bothering her so I could help, but I couldn’t figure it out.”

The next day Hope told me that she and Dana gave Rhema the opportunity to say she was sorry. “But she was too happy,” Hope reported. “Rhema just kept giggling! So Dana suggested that Rhema give me a kiss on my arm.” So with a little help Rhema kissed (nuzzled) Hope. That was it, case closed. And Hope laughed at the whole thing because she takes Rhema just as she is and loves her whole.

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I’ve been thinking a lot about Rhema’s voice. How I listen for it, like a hound dog with perked-up ears. According to the speech evaluations she presents with a “limited phonemic repertoire”, and is currently working hard to learn to produce letter sounds. Her voice is beautiful and rare and every sound is precious because it comes from her lips. My Bible study reading in 1 Samuel this week said when the word of the Lord was rare in those days Samuel prayed, “Speak, Lord, for your servant hears.” I couldn’t help but think of Rhema and how I wait to hear her, how her “Bye” in the morning as I drop her off at school doesn’t come easy but when it comes it makes my day. So too, my soul longs to hear God. I know that just one word can breathe new life into me.

“Speak, Lord; for Your servant hears. I have prayed to You, I have told You my grief and now I am just sitting still to hear… I am all ears and all heart. If You will command me, I will obey. If You will comfort me, I will believe. If You will reprove me, I will meekly bow my head. If You will give me the assurance of Your love, my heart shall dance at every sound of Your voice. Only speak, Lord; for Your servant hears.”  ~Charles Spurgeon

I tiptoed into their rooms, prayed for them quietly and said “I love you.”

And I heard it. All this time, all along He’s been whispering love.

The never-forsaking

In the evenings Rhema often puts on her boots and coat and brings me the car keys. Sometimes we go to the store or McDonalds, but mostly we just drive, with the music of a lullaby CD softly playing. She stares out the window and I get to tell her many things.

“Rhema,

When you were a baby I was baffled by the fact that you did not sleep. I thought that babies slept, and you simply did not. You were colicky and seemed uncomfortable in your own skin. And just as you would finally start to fall asleep, spasms would shake your body. Even when swaddled, you would shake.

I was a clueless, new mommy. I read books for advice. I tried home remedies and supplements. Nothing seemed to work, and you would scream all night long. The on-call nurse always brushed it off as colic and suggested I try the things I had already tried. Daddy was in Iraq then –at the height of the war – and we lived in Germany. There were so many long, sleepless nights, that I really thought I might go crazy! I felt very alone.

There was a TV program that came on from 1 a.m. to 5 a.m.  It was simply Bible verses set to instrumental music and nature scenes. Sometimes the crying (yours and mine) drowned out the music, but I would read and whisper the verses. One night these words came on the TV and went into my heart:

For He has said, “Never will I leave you; never will I forsake you.” So that we may boldly say, The Lord is my helper, and I will not fear… ~Heb. 13:5,6

Sweet girl, you and I are such a team. I can’t always physically be with you. And sometimes I fret about you not getting everything you need if I’m not there to translate, to be your hands, to make it so. That’s just a Mommy thing.

Listen close, my dear. You’ve heard this before but let it be my unending ode to you and to Hope. And so much more than me, know it’s our Jesus singing to you over and over, every moment, all of your days.

So remember
never doubt this
hold it tightly to your heart
I’m forever always with you
I will be right where you are
I will never leave you
nor forsake you
Know that I am with you
you will never be alone.”*

Rhema, age 1, timid about the water. I am with her, holding her hand as she prepares to take the first step.

Rhema, age 1, timid about the water. I am with her, holding her as she prepares to take the first step.

*Hidden In My Heart, A Lullaby Journey Through Scripture, “I Will Never Leave You”

That my house will be full

“Church is the one place where we should always feel love and accepted, yet it is one of the most intimidating places of all.”
~Jennifer J. Holt, Homelife Magazine, 2011

This past weekend I attended a Disability Ministry conference with two dear friends. The aim of the conference was to help churches learn practical ways to serve people and families with special needs. It was good to be in the company of others who shared a desire to see churches implement creative ways to reach special needs communities. I came away inspired, armed with notes and a new book (Autism and Your Church, by Barbara Newman), and my head swimming with ideas.

I love this excerpt from the book:

It was time in the worship service for the pastor to give the message. As the pastor began to speak, an individual started making noise in the back of the church. Without missing a beat the pastor calmly said, “Some of you might be hearing my friend Marie. Marie’s mom and dad have asked me to tell you that she has Autism Spectrum Disorder. Sometimes the tags in her clothes or a sound she hears really bother her. I appreciate that Marie is my cheering section today.”

A workshop I attended included a panel of 4 adults with special needs sharing about their involvement in church. This was the best part of the conference for me, and I found myself actually whispering prayers to God on their behalf (and Rhema, too) throughout. The panel was asked about positive experiences they’ve had in church, and I noticed that each response had something to do with friendship. It was clear that community and the relationships they’d formed in church were so significant to them.

When the panel was asked about negative experiences in church, a young woman spoke about how she struggled with the music being too loud for her. She said it actually physically hurt, and she often experienced guilt over needing to leave. For years she thought it was her fault. (And at this point I wanted to put my arms around her). She said that now she understands that it’s ok to leave the sanctuary if she needs to and she is learning not to be so quick to blame herself.

Another young woman, with a speech delay, also answered the question about her struggles in church. Each precious word she spoke took effort and I cannot ever forget what she said: “There’s no other kind of me.” I thought of my Rhema. In our church right now there is no other little girl like her. And I don’t know all that she feels, but I know she enjoys being a part of things even if she’s doing her own thing – that is her part. And I’ve no doubt she desires friends and meaningful relationships, as we all do, even though she may not show that longing in a way we might expect. Oh, how I pray that she will experience true friendship in her life.

There’s no other kind of me. Sweet girl, it’s a burden and it’s a gift.

Another question for the panel was, “What can people in church do to make it more welcoming to people with disabilities?” One answer: “We don’t like to ask for things, we are not being picky, we are not expecting everything to be perfect. Just know that it’s a big deal to ask for help.” A young man with Asperger’s said that he wanted people to know that he has what he has and is what he is forever, and that it’s hard.

As I listened, I was suddenly filled with an odd dream, a desperate prayer and an even bigger hope. God, one day can my Rhema sit on a panel like this? Can we hear from her? – what she thinks and how she feels, the good and the hard, anything she wants to share. I don’t care if it’s her own speaking voice or an automated voice or pictures on an iPad, please please help her find a way. Please just let me hear what’s inside.

The panel did a great job, and I hope there will be many more conversations like it in many churches. An oft-referenced Bible passage is Luke 14 where Jesus instructs, “But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Make them come in, so that my house will be full.”

The ones who require extra help, the ones who are too loud, the ones who don’t speak, the ones who are lonely or bullied or overlooked, the ones who cannot seem to reciprocate – God says they will bring blessings! And they are to be given special honor.

Do not let fear or your child’s challenges (or your own challenges) deter you from finding a church home. I have found that many churches have a heart for the special needs community – from putting trampolines in Sunday school classrooms to setting up buddy programs to hosting “Mom’s Morning Out” for women who have children impacted by disability.

Two years ago this happened:

So there’s another thing about church. We always sit in a small pew, in the second to last row, near the door so that we can make a fast getaway when the need arises. I think it can be overwhelming for Rhema still – all the people, the sights and sounds – but her seat, her pew, is predictable and comforting. In the past, if we’ve arrived and people were already sitting in “our” pew, Rhema has attempted to sit on them. When we re-direct her to another pew, she’s completely thrown. She’s even cried.

This morning before church, B and I had a brief conversation about where we’d go if the pew was already occupied. We had a plan.

But when we arrived at church we found this in our pew:

(I “whited-out” our last name for the blog).

No one said anything to us about it. They just noticed our struggle on Sundays and wanted to make it easier. We often worry that we’re disrupting the service. But that little sign spoke volumes to me – that we are loved as we are, that we belong, that we are family.*

Ed Note: If you are visiting a church for the first time, call the church office a week ahead and let them know about your particular needs.

Some articles and resources:
Is Your Church Open to Autism? By Emily Colson
Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families By Amy Fenton Lee
The Inclusive Church blog
Special Needs Smart Pages: Advice, Answers and Articles About Teaching Children with Special Needs by Joni Eareckson Tada

A rap to remember

I used to ask Hope how her day was or how her dinner tasted she would very enthusiastically spell her response: “G-O-D!” I’d laugh and tell her she forgot an O. But no matter how often I corrected her, she’d always forget the extra O. So it became a thing, her response now is always G-O-D.

I am reminded of how important it is to tell the story of God’s goodness to my children.

To anyone who will listen, really.

In my Bible class we’ve been studying the books of Joshua and Judges. It’s a hard journey, but there are miracles galore from the waters parting to time standing still to great battles won. Then, just a bit of time passes and, “…another generation grew up who did not acknowledge the Lord or remember the mighty things he had done…” (Judges 2:10)

Recently one of Rhema’s teacher wrote on the Facebook page that she is thankful to enjoy the gift of Rhema every day. You can imagine how it touched my heart. And I thought, were it not for autism, we would never have known the beautiful and creative teachers who love and give and teach and sacrifice day after day for her/us, and then say it’s their joy to do it. So good.

For me, I hope I will be found naming the good. Seeing it, digging for it, no matter.

Because these two little girls?

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There’s so much good to tell.

I don’t want them to forget. I don’t want to forget.

In Judges, the prophetess Deborah sings a victory song to remember. My girl Cha says I got skillz (haha), so I wrote a rap to remember. And it goes something like this.

Hey yo. It’s Jeneilly J
Got a lil’ song, got somethin’ to say

Had my fly guy, sweet babe of mine
It was goin’ great, yeah life was a shine
Suddenly the world lost focus
My precious girl got the diagnosis
Faith and dreams and hearts were broken
Trials and tears and words unspoken

The pain and sad, yo, I was feelin’ it
But hold up wait a minute
He be using that girl to teach my spirit
Chillin’ it, willin’ it, fillin’ it, heart-healin’ it.

And it was good,
spell it G-O-D, all G-O-D
Drop the second O, no need to tell me
It was good, y’all, spell it G-O-D, all G-O-D
Drop the second O, no need to tell me

Now check the second verse
about the bestest sister in the universe
She came named Hope with hope to disperse
Giving love and joy in continuous bursts

The pain and sad, yo, I had been feelin’ it
But hold up , wait a minute
He be using that girl to lift my spirit.
Chillin’ it, willin’ it, fillin’ it, heart-healin’ it.

And it was so good,
spell it G-O-D, all G-O-D
Drop the second O, no need to tell me
It was good, y’all, spell it G-O-D, all G-O-D
Drop the second O, no need to tell me

Last but not least lemme switch this dope beat
That fly guy and I? Nearly faced defeat
I served up straight hurt, ain’t no happy meals
Yeah sista girl, I’m just keepin it reals
When I couldn’t stand and I needed it most
Mercy poured out like a fire hose
Grace covered me from my head to my toes

Yeah Love, He put us back togetha
And now we down for whateva
Babe, I’m grateful fo’ foreva

And it’s good, y’all
spell it G-O-D, all G-O-D
Drop the second O, no need to tell me
It’s so good y’all, spell it G-O-D, all G-O-D
Drop the second O,
are you feelin’ me?

~by MC Lil Jeneil Appeal

My favorite part

Hope and I got away, just the two of us, for lunch with the Disney princesses.

At one point during our lunch, she explained that she’d been a little disappointed in one of the (gigantic) slides at the water park we’d visited. “I was hoping,” she said casually, “for something more epic.”

I nearly spit my food I laughed so hard, and then I stared at her.

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My little Hope. Her love for Disney princesses has faded somewhat, but I recall when she was younger and dressed in gowns and wore a tiara over puffy hair almost every day. People would ask her name and she would very seriously tell them Princess Ariel or Rapunzel or Belle. She’d stay in character all day correcting us when we accidentally called her Hope.

Now she’s almost eight and using words like epic. How and when did this happen? As she laughed and talked and ate her food, I tried my best to memorize every detail of her. Lunch would end too soon.

Remember this, I kept telling myself. Remember this.

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After dinner on our last night in Florida we stepped into an open sitting area where a man played songs from Disney films on a piano. They were beautiful renditions. Rhema began rocking from one foot to the other. Brandon took her hand and guided her in a circle: “Spin, Rhema.”

I cannot recall ever seeing them dance like that. As the piano music filled the air – ‘And at last I see the light, and it’s like the fog has lifted…’ Rhema danced. And we cheered.

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When the song ended a woman walked over to us and said, “You are a beautiful family.”

Her words encouraged me in such an unexpected way and she could not know. Because until the moment they danced I’d felt so… ragtag. Just a series of fumbles, barely keeping it together.

Brandon and I are not always good to each other when dealing with lots of stress. Taking a trip like this is stressful, at least for us. And I think the wishing things were different/easier (we do, sometimes we do wish it and that’s just the truth) and the frustration over what we can’t change boils into anger. Anger that we direct at one another.

But then moments later we see our girls and all that God has given us and we know there’s beauty in the life of our imperfect family. It’s then that I am just amazed at God’s plan, that He would let me be a part of it, a part them. (So it is with the group of autism families traveling to Disney. It’s not a club I would have imagined belonging to years ago – and there was a time I did not want to – and now I feel oddly blessed, so blessed, to be among them.)

It’s joy and heartache, it’s beauty and ashes, it’s both and. God’s grace over all. Not one without the other. They spin and swirl and come together, like my daughter dancing on her father’s hand.