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.

DSC_0238 DSC_0243 DSC_0250 DSC_0246

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.

DSC_0254

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…

DSC_0159

DSC_0269

DSC_0202

IMG_8942

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.