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.

Dance1

Dance2

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.

Magic wings

Disney World survived us!

We made it there and back with the help of a number of individuals and organizations coming together: Wings for Autism of the Charles River Center, ASD Vacations and Autism on the Seas. This trip was a first for many and it made the news. Hope, Rhema and I are in the video below briefly and there’s a great shot of the back of my head as I’m trying to get our bags checked. (Ha).

Channel 7 News story (video)

Channel 5 News

It was both and. Our trip to Disney. It was really fun and good and really hard and challenging. All worth it.

And already I find myself letting go of the hard and treasuring in my heart’s memory the GOOD stuff.

For families thinking of going to Disney, I wanted to briefly share our biggest challenges: waiting and food. Even though we went during one of the less busy times of year, it was still very crowded and the lines were long. Rhema has only one mission in amusement parks and that is to ride rides – as many as possible, over and over. She has little patience for shows, exhibits, characters, parades, etc. We used the FastPass system to book three rides in advance each day, but these were all spaced an hour or two apart. We also used the Disability Access Services (DAS) card. We could take the card to a particular ride and get assigned a time to return (usually an hour later) so we didn’t have to physically stand in line. We could only use the DAS card for one ride at a time. So you can imagine all the planning and juggling that was needed to manage the waiting and keep things moving.

Rhema constantly wanted to bolt. The second we took hands off her she would take off, and on a number of occasions we almost lost her. So there was a lot of me or Brandon holding her and a lot of her resisting. This made the waiting tedious. But Rhema amazed me with how well she waited. She had to wait so much and she was flexible when she couldn’t get on a ride. There were times when I was sure she was going to lose her stuffing but she would keep it together. I was so very proud of her.

At Magic Kingdom, we met up with Lyah who served as 1:1 respite for Rhema. She used to work at Disney and now teaches kids with autism. She was a wonderful support to us. We’d corresponded a good deal in the past month, and she immediately seemed to understand what Rhema needed and how to help. She helped us maneuver the park and stayed with Rhema while Brandon went to sign us up for rides. Whenever Rhema bolted Lyah was right there. Thank you, Lyah!

Lyah with the girls

Lyah with the girls

The food was insanely good! The food was insanely expensive! Rhema is a picky eater and basically refused to eat. Almost every insanely expensive plate of food put in front of her she pushed away. I think she’s only person to go to Disney and actually lose weight (wish I could say the same!) Hope is allergic to nuts, wheat, dairy, eggs and soy. Everywhere we went they were very accommodating to Hope’s needs. The challenge came in trying to find a place that served food Rhema would eat (many a meltdown occurs in restaurants because she’s frustrated by the food) and that was safe for Hope and that fit into our Disney dining plan and that didn’t have a long wait.

It was a comfort and relief to travel with the group of 21 Magic for Autism families. The heavy weight of worry I usually feel when we’re traveling (or when we’re in public places in general) was lifted. On the plane, parents periodically checked in with other parents: “How you doing?” or “How’s [Ben] or [Sarah] doing?”

On the trip home, one boy had a particularly difficult time getting through the security check point with his mother. Even though TSA had set up a separate line for our group and tried to expedite the process, I think the crowds and confusion and noise and unfamiliar was just too much for him. I saw his mother was in tears and so did some of the others. Instantly we left our own precarious situations – our children/families in the line – and went to this mother to lay a hand on her shoulder, to encourage her son, to see if we could do anything to help, to even just a shed a tear with her. Because we got it. We so got it, because each of us has been there and we needed her to know more than anything that she was not alone.

My friend Andrea wrote something years ago that I’ve never forgotten:

“All of us had made similar choices, seen beauty in the same light, endured related pangs, been patient for healing, and bear the same badge with pride. Without much explicit sharing or rolling up of any sleeves, we knew each other’s life stories–in large part … a sisterhood. Women are amazing creatures. And adversity is an amazing bonding agent. Autism is like Krazy Glue.

Autism mums can be a diverse lot. Some are angry, some are militant, some are bitter, some depressed.

And yet, some glow.”

The ones that glow – these are the women with whom I traveled.

I am excited to share stories from our trip. More to come…

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Trusting still

We’re off to Disney World today!

We’re doing it through Wings for Autism and ASD Vacations, and the travel agent coordinating our trip has a child on the spectrum. We will have our own check-in line at the airport. Our plane from Boston to Orlando (and back) will be completely occupied by families who have children with autism. Cool, right?! When we arrive, we’ll meet with Guest Services to learn how to use the Disability Access Service (DAS) cards. We’ll also meet with someone from Dining Services to talk about special dietary restrictions (‘cuz we have A LOT!). We will have 1:1 respite while in the parks.

For us, I think this is the way we pull this off. It’s going to be crazy and fun (I hope!).

I thought I’d post an oldie in the meantime – this has been on my mind a lot lately:

“Trusting still sits well with my soul.”
~Christina Levasheff

When Hope prays she asks small and big things of God: to lose her tooth before her sixth birthday (she did), that her food allergies would go away, that Rhema would “talk.”

I love the faith in her, so genuine and unreserved.

She was afraid of the dark and I told her that when I was a little girl and I was frightened at night I would ask Jesus to come. I would hold my hand open and believe that He was right there with me holding my hand.

Later that night when I peeked in I found her resting peacefully, her little hand open atop her blanket.

The answers to the petitions of my heart have not always been yes. And some answers are a long time coming. But I still whisper prayers in the night. In the morning I still know the comfort of God’s hand in mine. Because He is faithful. Every moment He’s been faithful.

Decades from now, when life is hard, when life is good, when life is unexpected, when she’s afraid, when she’s waiting, I hope she will say,

“Trusting still sits well with my soul.”

(Originally published November 2012)

Words of life

She got a promotion to heaven this week. She was not my biological grandmother. All of my grandparents died young and I never got a chance to know them. So Gramma, aka Mariam Smith, “adopted” my sisters and I as her own. The moment she decided we were hers, she poured into our lives — from when we had long skinny black legs and puffy ponytails to the day each of us walked down the aisle to the time we were handing over a new baby for her to hold. My sisters and I have always been amazed and baffled by how she loved us so much. She shaped us, she fed us, she showed us what it looks like to be a good wife and mother, she taught us about life and love and how Jesus never fails.

Now that she’s gone I feel almost lost without her comfort and wisdom. She’d often call me up (or email me) after reading a blog I wrote and preach me a little sermon. I’m so glad I saved her letters and comments.

Gramma had many, many grandchildren and great-grandchildren. She was connected to this little section of the blogosphere just because I was here. And if she met you she’d adopt you, too. No matter who you are or who you’ve been, she’d gather you under her wings and bake you a pie. You would feel loved and valued, you’d have no say in the matter.

Her words that I share here were for me and Brandon, but perhaps you might take some encouragement from them as well. And get a glimpse of her beautiful heart.

On marriage

And again I say PRAY. For the other half of you. You are so Blessed to have each other. Prayer and Praise will PREVAIL. Love you both. Gramma

You know Jeneil I believe actions speak louder than words,You can say I love you until the cows come home but it is what you do to prove or show your love. Hope I have not been too preachie but helpful cuz you know I love you and Brandon. Love, Gramma

Dear Jeneil, I just read your blog and wanted to comment to you and Brandon privately. My four children all know and will tell you they were well loved by their Mother and Father,but they always knew that their father put their mother first and vice versa… We never had Date night because we enjoyed staying home an being with our children,but we did thing to show how special we thought each other was…

On food

Hi Jeneil,How are you doing?Have you eaten the pie yet? I hope it was alright.It is not the best I can do,I was a little short  of my crust so I called it apple pie crumb.I will do better next time:) Love you much,Gramma

Dear Jeneil and Brandon, I LOVED making the food for you and will make it anytime. I was thinking next of baking a chicken and stuffing. It takes such a little effort and I loved knowing my grandchildren are enjoying it. Let me know okay? Love you much, Gramma

Hi, Let me know if you want me to cook something for you I will be glad to. It will include chocolate cake with lots of frosting. :) Love you much, Gramma

On parenting

Baby steps,baby steps how gigantic they are to us.

Go Rhema and Hope.

Love, Gramma

This walk (or run )with Autism has made you and Brandon wiser.Isn’t it funny how we think some things are so important at the time and later we look back and say what was the problem?I could tell you a lot of stories of things I put such emphasis on and later could not for the life of me remember why.

Keep on keeping on Jeneil and Brandon Rhema is teaching you a lot. Love, Gramma Smith

Her comment in response to a story I told about a pair of women who sort of implied that Rhema was not smart. It still makes me laugh!:

Good for you.I wish I had been there I would have said all of those things for you and then smacked them.:-)Love, Gramma Smith

Happy birthday RhemaLove. Because God does not have deadlines for his Blessed children (and aren’t they all Blessed,)Love and kisses from GreatGramma and Grampa Smith

HE IS STILL ON THE THRONE JENEIL AND BRANDON…YOU WILL KNOW WHAT TO DO FOR RHEMA BECAUSE GOD WILL TELL YOU. LOVE YOU MUCH. GRAMMA

Praise GOD from whom all blessing flow. I know God has a PERFECT PLAN for our precious Greatgrandaughter. When the praises go up Healing comes down.

Hang in there Jeneil and Brandon, I am so proud of you and your parenting. Try to get some rest. Love,Gramma

You are not making the decisions your faith is.God knows all that Rhema is dealing with and has her in his hands.I know your and Brandon’s parental instincts kick in( and Thank God they do) but you have always given over to God and he has given you two the wisdom to do what is right and safe for Rhema and Hope.

I will pray and pray for all of you but know in my 76 year old heart and wisdom he has it all under control. Love you much,Gramma

I cannot tell you how my heart and eyes filled up reading your beautiful words.You are such a good mother and an excellent author.I love all of you so much and I know that God is reaching and teaching you and Brandon so much through Rhema’s life. We know she is and will be blessed so many times and in so many ways.Do we really appreciate our children’s accomplishments or do we take them for granted? God is teaching you and I to appreciate them. Love to you all and give me a call when you can I really enjoy talking to you.I do not have too much communication with the world now so a telephone conversation with love ones is appreciated. Love, Gramma

When I lived in Germany, she sent me this:

Hi Jeneil, Just to let you know I am praying for you and counting the days until you come home. Love you, Gramma

Hi Gramma, Just to let you know I am forever thankful for you and counting the days until I see you again. Love you, Jeneil

Precious in the sight of the LORD is the death of his saints. ~Ps. 116:15

Precious in the sight of the LORD is the death of his saints. ~Ps. 116:15