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

At first sight

DSC_0220 b
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

I need to be at a certain place at a certain time to give a presentation. So I prep the night before, practice my little speech, pack the school lunches and press the clothes. Wake up hours early, practice the speech again, get the girls cleaned, fed, dressed, out the door and to their respective schools with time to spare. I’m well on my way, but just as I arrive at the train station there’s an accident. The train service shuts down completely.

I resort to driving to the city, honking my horn in Boston traffic with the best of them. I make it, two hours late. But it’s over. Someone has taken my notes, given the speech in my place. And I’d made such a big deal of it in my mind.

It continues to be one of those days when, try as you might, it’s just not enough. For all the rushing you’re still two steps behind. For all your good intentions, you still fall short.

I drag myself home late. Meeting me at the door is dancing laughter, contagious joy, purity and all the goodness of childhood wrapped in the gift of Hope.

Here. Here is treasure.

The pressure and striving and stumbling melt away. The time spent chasing after the wind, forgotten. Only to be replaced by a burst of deep comfort, relief and gladness.

At first sight of her.

And I think, this is how it will be. Joy, unspeakable joy. And He will meet us with “healing in his wings”. Our lack and loss, the suffering and disability, the not-so-important things I’m holding, my guilt and my to-do list. All of this will fade away.

One great day. At first sight of Him.

A silly story

So a while back Hope was telling me how much she wanted a little sister or brother. She kept talking about it so finally I decided to turn it into a game,

“You do have a little sister.”

“No I don’t.”

“Yes, you do.”

“Well then, where is she?”

“She’s um… in my closet of course.”

“In the clawwsett??”

“Yes. I play with her after I put you and Rhema to bed. We try to be quiet and not wake you up.”

She eyed me suspiciously.

“How old is she?”

“Oh, she’s still a baby.”

“Does Daddy know about her?”

“Nooooo. When he comes home from Kuwait we’ll surprise him.”

“Well, what’s my little sister’s name?” she asked hands on her hips.

“Her name is…ahhh… Alana. Yeah. Alana.”

And on and on went the questions and answers. The story got bigger and bigger. I thought we were, you know, exercising our pretend play skills, doing some good old make believe. It took a bit for me to to realize that Hope actually believed the story. As I tucked her into bed that night she asked me if she could meet Alana in the morning… or at least see a picture of her.

“Well… Sure!”

So the next day a very excited Hope sat down next to me.

“Oh Hope. She looks soooo much like you. Can’t wait to show you her picture.”

“I can’t wait!”

“Ready?”

“Ready!”

alana

She hooted with laughter, it bubbled up and spilled out.

We laughed so hard we had tears.

“You got that off the Internet! You tricked me!” She said in between giggles.

“I didn’t mean it. The story just kind of got out of hand.”

I was relieved that was the end of Alana.

Several weeks later as I strolled out of my bedroom I was somewhat disturbed to find a baby doll in her birthday suit sitting in my closet.

Again, the next day, I was in my room and looked up to find the doll staring at me.

Hope entered and exclaimed,

“Oh hey there, little sis!”

Well played, Hope. Well played.

Hope and Alana. (My closet is dirty because Alana made such a mess in there).

Hope and Alana. (My closet is dirty because Alana made such a mess in there!)

Wednesday night miracle

I posted this on Rhemashope Facebook page and I wanted to the story here, too. Days later and I still can’t stop smiling!

Several nights a week Rhema puts on her shoes and hands me my purse and keys. I know she wants to go somewhere, but I don’t know where. So we just get in the car and drive for a while. We’ve been doing this for months – since before Brandon returned home from deployment. I’ve talked about it at school meetings with her teachers, about how I wish she could tell me where she wants to go.

Earlier this week she was home all day after an illness so I wasn’t surprised when she initiated the nightly-drive-routine. She put on her shoes, brought me my keys and my shoes. Then she put “Grocery store” on her Ipad. It was a page/screen on her communication program I’ve never seen her use before. [Later I went into her Proloquo app and found the button. She went through a number of pages to get there: Art Activity->Categories->Places->Stores ->Grocery store.]

Over and over she tapped the image: “Grocery store.”

It was the first time I’d ever seen her associate an image with a place/destination.

We went, of course. In our PJs. I may or may not have broken the speed limit! And she ran to the freezer section of the store and got an Italian ice. Sniff. My girl is just like her mama. Highly motivated by food.

I told people, total strangers, She told me! She told me she wanted to go the grocery store.

She is so patient and smart. I am blown away.

Love-fed

sprinkles

I was sitting on the couch minding my own business when Rhema walked up to me and started pushing something into my mouth. She caught me off guard and I sputtered and resisted at first, not knowing what she was doing. I took her hand and found sprinkles stuck to her palm. Flower sprinkles.

She tried again, pressing one to my lips.

Rhema has a strong opinion about sprinkles: she LOVES them. I keep them on a high shelf so that she doesn’t eat a whole container full in one sitting. She’d moved a stool over to the cabinet, got down the sprinkles, and forced them into my mouth, I mean, offered me some.

Oh my heart.

I think you know. This was no small thing. This sweet girl, seeking me out… not to lead me to something she wanted (and just the fact that she looks for me is something I never want to take for granted). She came to me to give to me.

Brandon and Hope wanted some, too. She generously went to them with her sprinkles.

Thank you, Rhema.

During my junior year in college I had the life-changing experience of living and working at the Missionaries of Charity Home for the Destitute and Dying in the poorest section of Addis Ababa, Ethiopia. The mission was founded by Mother Teresa and I spent my days working with special needs children in the orphanage and sharing life with the young women who lived there. Every day we shared the same meal together: injera – a spongy, porous bread, topped with small portions of meat or potato and a sauce called shiro.

Injera meal (Source: Wikipedia)

Injera meal (Source: Wikipedia)

At these meals my Ethiopian friends would “gorsha” me. Gorsha is when you break off a piece of injera with your right hand, wrap it around a piece of meat, dip it in the shiro, and then put it in your friend’s mouth. Gorsha, they taught me, was an act of love and friendship. And the bigger than handful of food, the greater the love.

Honestly the gorsha took some getting used to. I missed forks and spoons. Our injera was gray, thin and bitter (the poor kind) and the shiro made it all soggy and squishy in the fingers. Sometimes I worried I would throw up. But when I began to understand it, this special way of feeding the ones you love, it touched me deeply. We did not speak the same language, but as my bonds grew strong with these Ethiopian women, I began to treasure our time eating injera. I will never forget sitting through entire meals with my heart and mouth wide open as friends fed me gorsha-style. They forever have a piece of my heart.

“I am the Lord your God… open wide your mouth and I will fill it with good things.” Ps. 81:10

Missionaries of Charity, Addis, 1995. I am third from the left, back row.

Missionaries of Charity, Addis, 1995. I am third from the left, back row.

Nineteen years later and my Rhema doesn’t know it, but she’s given me a precious gift. She’s taken me back.

Once I sat in a circle of women over soggy bread and sauce, in a home for the outcast, the orphans the sick and destitute; they nourished my soul and I felt so thankful and special to be among them.

Once Rhema gently pushed apple slices into my mouth, and I was comforted.

Today she fed me sticky flower sprinkles.

I am loved.

I am full.

Let’s review

I’ve been meaning to blog for the longest time. It’s been a challenge to find the time and energy to think and write. And when I’ve been away from this space for too long, I complicate things in my head and pressure myself to be something other than I am.

Like students in the first few weeks of school, we seem to be in a review course. Right now we’re just simple.

Grace is an ongoing lesson – how to give and be grace to one another. Because we have received God’s never-ending grace. My biggest grace-teachers are Brandon, Rhema and Hope. Even when I am absolutely horrible, those three love me. “Grace means there is nothing I can do to make God love me more, and nothing I can do to make God love me less.”* Every day, every single day that I get to be Rhema and Hope’s mother, God whispers this truth to me.

I watched a video from six years ago when Rhema’s was working with her in-home therapist. Unexpectedly the video brought tears to my eyes. (Nevermind the fact that my precious baby is growing up so fast!) In it, she is so happy. No aggressions, no bites on her arms or self-hitting, no pulled-out hair. Just giggly. And she speaks. She says, “One, two, three, go.” It’s her sweet four year old voice, and it’s been so very long (years) since we’ve heard clear, articulate, spontaneous words like that. It was like hearing her speaking voice for the first time again and I played it repeatedly, memorizing the sound.

And I wished for a different story. And I wondered and worried. Did we miss something? Did the seizures do this? Did she regress so much? Is it that we failed to consistently practice “One, two, three, go” that we lost it somehow?

This morning I underlined a sentence in the commentary that accompanies my Bible study of Joshua. “People in biblical times viewed a name as a living sign representing the future potential of an individual.” I reviewed: Her name is Rhema, which means ‘spoken word, a thing said’ Her name is a promise. Some have encouraged me, saying that I speak for her through this blog. Yes, I record the stories and share what God is teaching me through it all. But I believe that she speaks (and will speak in whatever form that may be – vocally, in writing, pictures, etc.) for herself. I simply still believe.

Though we could not have imagined the challenges and setbacks we would face, God still has a good good plan for our loved ones, for our dear children.  My friend Judith once said of her son, “Two steps forward, one step back. I still believe in you, Jack.”

I still believe in you, God, able to do ‘exceeding abundantly above all that we ask or think’**.

I still believe in you, Rhema-girl.

*What’s So Amazing About Grace, by Phillip Yancey

**Ephesians 3:20