Sorry

An apology is a good way to have the last word.
~Author Unknown

I’ve long struggled with how to handle conflict between Rhema and Hope. When an offense has been committed, I’ve often observed other parents go through the make-up routine, facing the children to each other and prompting one or both to say sorry and/or even give a hug.

This little drill works somewhat in our house. When Hope is in the wrong, she is corrected and prompted to tell Rhema she’s sorry. In earnest remorse, Hope will say, “I’m sorry, Rhema” to… the air. Rhema is usually long gone. Or her back is turned or she’s engrossed in a new activity. She does not seem to hear, want, understand or care for Hope’s apology.

Rhema’s offenses against Hope stack high by the end of the day. She swipes toys and food. She breaks Strawberry Shortcake’s head off. She rips Hope’s prized artwork to shreds. She colors in Hope’s books. She unintentionally crashes into Hope and knocks her down as she sprints about the house in a continuous loop.

Rhema does not often seem to “get” that she’s hurt her sister, and while Hope has often tried to hug Rhema, Rhema has never hugged Hope. I have tried to get Rhema to give Hope a high-five (in replacement of the make-up hug), but this is usually far from smooth. I have often wiped Hope’s tears and said, “Rhema’s sorry, honey. She’s sorry. She just can’t always show you.”

After Christmas, the girls were playing and Rhema somehow slammed the lid of a toy onto Hope’s finger. It was unintentional, but Hope seemed deeply hurt and cried hard. I stooped to her and tried to comfort her, but she was dramatic and distraught. I grabbed Rhema with one hand as she ran by.

“Rhema, you really hurt Hope’s finger. You have to be careful.” I said, thinking I’d used way too many words.

I looked at Hope. I sensed that for once she just really needed Rhema to acknowledge her, to look at her and see her tears.

Rhema tried to squirm out of my grasp, and then she threw her head back and burst into laughter. The harder Hope cried, the harder Rhema laughed, her body shaking with it.

Uh oh.

“Um. Rhema, say sorry to Hope… Say sorry.”

Until this point, I had never tried to get Rhema to say sorry. Never. I was simply sure she could not do it. Perhaps reading the “sorry stories” of blogfriends emboldened me. And the crying and laughing had escalated to such a degree in the house that I thought, hey, what the heck.

“Rhema. Say sorry.”

Rhema stopped giggling.

The heavens opened and the stars aligned and Hope and I nearly fainted when Rhema said, plain as day,

“Saw. Eeee.”

And then she bolted.

Even Hope’s tears were in shock because they stopped dead in their tracks on her cheeks. As we stared, a wide grin popped out on her face.

“She said sorry!”
“She said sorry!”
“Rhema’s sorry!”

We danced around the living room, saying it over and over.

That Holy Thing

“…Therefore also that holy thing which shall be born of thee shall be called the Son of God.” Luke 1:35

 

After the children were put to bed, I had big plans for Christmas eve: SLEEP.

But alas ‘twas the night before Christmas and all through the house, the creatures were stirring…

There was my youngest with her periodic crying and then the Tylenol and the middle-of-the-night nebulizer treatment.

There was my oldest with her ceaseless humming and then a potty accident.

There was my tossing and turning in a bed meant for two, my midnight prayers for loved ones, my heart with a friend spending her last days in a hospice home.

I remember the nights as a child when my sisters and I were too excited to sleep – for the promise of sunrise and Christmas miracles downstairs.

This morning found me still tired, my loved ones still in pain, my husband still away, my daughter still autistic, my house and heart still a mess. Christmas.

“Today is baby Jesus’ birthday,” Hope informed me.
“Yes, today we celebrate His birth.” I said mechanically. We’ve been over this.
“But why???” she asked. She always asks why.
“Because… it’s His birthday.”
“But why???”
“Why what? Why do we celebrate? Because it’s His birthday.”
“But why???”

Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Saviour, which is Christ the Lord. 
(Luke 2:10-11)

Oh yes. It’s the message that was preached to me this week as I sat at my friend’s bedside, her body failing, but her soul well. That this has everything to do with Christmas.

And we knew Immanuel – God with us. God come near.

The Son of God come into my mess. The Light of the World come into my darkness. The majestic come into my mundane.

We celebrate that holy thing that has come and entered our world, and given us a chance to make room for Him.

We celebrate… for with the arrival of that holy thing in our hearts comes the promise: God will wipe away all tears from their eyes, and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain. (Rev. 21:4)

And for the first time in 34 Christmases, I know the great joy.

Thank You

Holidays have been kind of bittersweet for me the past few years. Rhema still does not “get” Christmas or birthdays. And, honestly, it took some of the fun out it for us as her parents. Why make a big fuss when Rhema seems to have no clue or care about such things. Last year we did not even put up a tree, and instead relied on the grandparents to do Christmas (as we have done for the past few years).

This year has been different. With Brandon deployed, our annual trek to Michigan was not really an option (how we miss them). This year it has really been my desire to make Christmas special and meaningful to Rhema and Hope. But I had no idea where to start – I’m not naturally good at this stuff.

Enter the Wilson’s. Matt came over and put up our tree, and Jess gave me lots of ideas and sent Rhema-safe decorations (pom-pom garland and tinsel).

And then, this weekend, the Wilson’s brought Christmas to us. Matt dressed up as Santa, Darby was an elf, Kendall was a reindeer (and Jess came as Jess.)

   

Oh, if you could have seen the look on Hope’s face when Santa came through the door, bearing gifts galore!

She was literally frozen for a moment — wonder, surprise, excitement, dreams comes true. It was the kind of moment that a mother treasures forever. (Most of these moments have come for me in seeing others love my girls, and nothing touches my heart more).

During the visit, Hope asked to see Santa’s Nice List. (Up until this point she had been very concerned that she might be on Santa’s naughty list… due to transgressions committed earlier in the week). Santa had come with just about every prop in the book, but he didn’t bring his list. Jess quickly came up with the excuse: “Oh, Santa left his list at the North Pole.”

While Kendall dazzled me with her drawings of Boots, Benny, Tico and Isa and all the cast members of Godspell, Darby worked on her own little project. Some time later Darby produced a piece of paper with lots of names written on it; across the top it said: Nice List. And Hope, of course, was the very first name on the list. And Santa, of course, showed Hope that she was indeed on the Nice List.

Darby cares about the details. The entire time her focus was on making this a special time for Rhema and Hope.  She is 8 ¾ years old, and there’s no doubt this girl is already having a profound impact on this world. Darby and Kendall both were so amazing and sweet. I seriously think Jess and Matt should write books and teach seminars on parenting. These two little girls are the best of the best.

When it was time to go, I stood Rhema to her feet and told her to give a high five to Santa. She had not acknowledged Santa or shown any interest in him. But when I stood her up, instead of giving him a high five, she clambered up his legs, climbed over his big belly and right into his arms. It was PRICELESS… and perfect.

And she didn’t want to let go - I had to pry her out of his arms! Rhema doesn’t give her hugs to many people. But I’m convinced that she recognizes love. And it made me wonder (again) if she actually understands more than I give her credit for… like maybe she does get the idea of Santa. Truly it seemed that in that room with Jess and her family, just about anything was possible.

Jess came with the gifts and well-wishes of many dear bloggy mamas. For the past few months I have been receiving ‘encouragement packages’ from friends – some of whom I have never met. Seriously, the timing is always impeccable - a package arrives just when I’m having a particularly rough day. (Thank you, Michelle, for the way you inspire kindness).

Try as I might I can’t be eloquent about this. The love and support we have received has been like nothing I have ever seen or could have imagined. It’s like God really did open the windows of heaven and is heaping blessings upon my family. The only thing I can liken it to is the gift of grace through Christ – so lavishly given, so very undeserved.

I can only say thank you, and hope you know that that does not come close to conveying our gratitude. Thank you for the thoughtful gifts. Thank you for your generosity. Thank you for the prayers.  Thank you for the cards and letters to Brandon. Thank you for being here, and thank you for sharing in our lives.

 

Hope-ism

 

I told myself I would not be one of those parents who ooohhhs and aahhhs and details every little thing my kid does and says, but alas…

God gave me Hope.

She turned 3 years old a couple weeks ago, and I had not known merriment until she blessed my life.

Some of my favorite Hope-isms of late (- her words in pink, of course):

“Good dinner, Orange Blossom. You get a token.”

. 

“Hope, what are you doing?”

“I’m blowing little bubbles in my bum. That’s what I like to do.”

 .

“Mommy, let me pray for you. You. need. it.”

.

“Hope, do you want broccoli or green beans with your dinner?”
“Broccoli and green beans.”
“No babe, broccoli OR green beans. One or the other. Which do you want?”
“The other.”

.

“Mommy! I pooped out all my chocolate frosting!!!”

.

(singing…) “The farmer in the hell. The farmer in the hell.”

 .

“This whistle needs batteries.”

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“Um. I don’t like your sweater… but I love you.”

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“I’d like a happy meal, please.” (said to the CVS employee at the drive-thru pharmacy)

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After bath time and before I put her pajamas on, Princess Hope likes to stand on a chair and look at her royal self in the mirror. She grins and waves and giggles and turns every which way.

The other night she placed her hands on her chest appreciatively and said,

“Oh, Mommy. Just look at my two acorns!”

 

Hound of Heaven

**Thank you so much for the cards to Brandon. I think he’s going to be the most popular soldier in Iraq! I know it means so much to him that people are thinking of him during this time. Thank you!**

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A few weeks ago, after Rhema’s Special Olympics gymnastics practice, I stopped to get the mail. It was 5:30 and already very dark outside. Our mailbox is located next to a fairly busy road, at the end of a long semi-circular driveway. I put the van in park, grabbed the keys out of the ignition and jumped out to get the mail. (Getting the mail was Brandon’s jobs and now that it’s mine… well, I’m doing good if I check the mail once a week.) It crossed my mind that it was risky to leave the van with the girls in it, but the mailbox was only a few steps away. We had lots of mail and it took me a few extra moments to gather it all.

As I climbed back into the van I saw that Rhema’s car seat was empty. I scanned the vehicle fast – maybe she had climbed into the back seat or the trunk? Not there. I felt sick to my stomach. “Hope, where’s Rhema???” I said desperately. My heart was pounding so loudly, I could barely hear myself speak. “Did she get out???!!!” I demanded.

“Yeah, she got out!”

After a few minutes of frantically searching the streets and calling her name, I heard her soft, happy hum. She was obscured by a huge evergreen tree, but I knew she was making her way down the other side of the driveway. I grabbed her in my arms, Rhema, and led her back to the car.

The thing I found most troubling about this particular escape is that Rhema seemed like she was on a journey of which I could never be a part. Completely oblivious to the danger or the cold, she was contentedly on her way, her eyes seeing things I could not see. She did not need me or anyone else – she was making her way, enjoying herself, her thoughts and her freedom in the dark. It seemed like if I had not stopped her, she would have just kept walking and walking and walking.  

It reminded me of something I read in the book Jewel by Bret Lott. A young man tells his mother that his sister who has Down Syndrome will always need someone to take care of her, to follow her as she walks through her life. “Momma, there’s somebody going to be following her the rest of her days,” he says.  

And I see myself following, chasing Rhema constantly, continuously– be it to prevent her from putting some non-edible in her mouth or getting into a mess or running into a busy street.

And our lives, hers and mine, stretch out before me.

And I will not grow weary; I will readily follow for as long as it takes. For I love her more than life.

 .

In this Advent season, I cannot help but think of God the Father chasing after us, longing to share the journey with us. From the first page to the last, the Bible tells the story of the Lord pursuing relationship with us. But all we like sheep had gone astray… turned our backs, took our own path… got lost. So great was His desire to bring us back to Himself, He sent His son to walk our road in this world.

C.S. Lewis wrote of his encounters with this ‘Hound of Heaven’:

“You must picture me alone in that room in Magdalen, night after night, feeling, whenever my mind lifted even for a second from my work, the steady, unrelenting approach of Him whom I so earnestly desired not to meet. That which I greatly feared had at last come upon me. In the Trinity Term of 1929 I gave in, and admitted that God was God, and knelt and prayed: perhaps, that night, the most dejected and reluctant convert in all England …The Prodigal Son at least walked home on his own feet. But who can duly adore that Love which will open the high gates to a prodigal who is brought in kicking, struggling, resentful, and darting his eyes in every direction for a chance of escape?”

Why would He choose to pursue me again and again? Me with my fickle, wandering heart and stubborn pride. How could He still want me as I am, and then bathe me in new mercies and healing forgiveness? I cannot understand why, but grace is the story of His pursuit of me.

When I think of myself chasing my daughter “across the margins of the world,” I think of the compassion of the Lord of Christmas, come down from heaven to be our Emmanuel, God with us.

He will not grow weary; He will readily follow for as long as it takes. For He loves more than life.

Mail Call

Soure: www.517prct.org

Friends, I have a request.

During our last conversation, my husband casually mentioned on the phone that there’s this huge box – like the size of our kitchen table – in his unit in Iraq, and every day it’s filled with mail.

But there has not been one single piece of mail for him.

Sniff. I’m. so. bad.!!!!!!

.

As you are dropping beautiful holiday cards or family newsletters in the mail, would you address one to him???  If sending a card, all you have to do is put a stamp on it and drop it in the mailbox (-no need to go to the post office).

Believe me, he loves this stuff. He hasn’t lived in his hometown since he was eighteen, and he still receives the town’s 4-page newspaper and every Sunday church bulletin. And he actually reads them. (I’ll be boxing all those up and sending them to Iraq).

His address:

MAJ Brandon Russell
STT/HHC/HBCT/3 ID
FOB Sykes
APO AE 09351

(He told me what all those letters stand for. HBCT stands for “Heavy Brigade Combat Team.” Ugh. Sounds… heavy.)

Anyway.

Can you help a sista out?

Smear Campaign

Oy, I don’t know if I should hit the Publish button on this one…

 

“One should either be a work of art, or wear a work of art.”  ~Oscar Wilde

 

 

Before the snow hit, we had some unseasonably mild days last week.

It was late afternoon and I needed some ingredients for a dish I was making. I grabbed a light gray sweatshirt out of the “clean” pile in the laundry room and slipped it over my head. As I got the girls ready to go, I caught a whiff of… smelly pebbles.

I checked pants (the girls’, that is). Clean.

I put them on the potty for good measure, and we were out the door.

It was nice out, so we didn’t even bother with jackets.

What I thought was going to be a quick run to the grocery store turned into a full blown shopping trip. With Rhema in the front and Hope in the back, I filled the cart. Midway through the shopping I sniffed The Smell again.

I checked the girls’ shoes for dog poo. Clean.

Gosh, someone’s really got to go. Better get home.

But there was a long line at the check out, and as we waited, The Smell seemed to get stronger. Especially when I bent over… to get my 24-pack of bottled water under the cart. But I could not determine The Smell’s origin. I even turned around in the line to see if it was coming from someone else.

Once in the parking lot, I could no longer detect the troubling odor so I decided to tempt fate and make a couple more stops. We picked up a couple prescriptions at CVS. We stopped in the Hallmark Store for some thank you cards… but it was there that the odor seemed to re-surface.

As soon as we got home, I made the girls go to the bathroom. But they didn’t have to go.

I was baffled.

I sent Hope on a reconnaissance mission around the house for lost smelly pebbles. (She knows the drill; we always do this before guests arrive at the house).

Hope came back reporting the coast was clear.

Then she stopped, scrunched her nose and pointed at me.

“Ewww Mommy. Your shirt is yucky!”

I glanced down at myself for the first time that day and discovered that I’d been a walking Poop Art exhibit, my sweatshirt the canvas.

.

(Note: I’m totally fine if you want to laugh at my expense.)

Brave

‘Cause it’s been fear that ties me down to everything
But it’s been love, Your love, that cuts the strings
~ Brave, Nichole Nordeman

 

 

To treat her MS, my twin used to take daily injections. The shots were extremely painful, and caused a number of unpleasant side effects. Every day, every shot was an emotional battle, and for a while, she was losing.

She came up with a game plan. She would rotate injection sites on her body over a week – Monday would be the right arm, Tuesday the left arm, Wednesday the stomach, Thursday the right hip, Friday the left hip, Saturday the right thigh, Sunday the left thigh. She assigned a loved one to each site – for e.g., “right arm day” was my day and she would spend the day praying for me.

A few times a week I would go and administer the shot to her. Afterwards, the pain would hit hard and fast for several minutes and she would spend the whole time, with clenched fists, praying for whosever day it was. I would spend the time willing her pain to pass, amazed that she would focus on someone else in the midst of it.

(But then again, she loves the One who was flogged, stabbed, ridiculed and crucified… the One who endured the pain of the cross and, all the while, thought of us.)

.

Even though she no longer has to take the horrible shots, she continues her fight against MS.

Hope and I visited her today while she received an infusion. She is receiving three thousand milligrams of solu-medrol intravenously over three days. The purpose, they say, is to reduce the inflammation around lesions in her brain. A metallic taste in the mouth, gastritis, weakness, depression – the side effects are brutal on her.

Hope is no stranger to hospitals and infusion clinics, but today she took issue with the nurse smacking my sister’s arm, searching for a good vein (there are no more good veins).

“What’s she doing to my Aunt?” Hope asked, none too pleased.
“She’s going to give her a long shot,” I said softly, trying to keep it simple.
Hope brightened, “Oh, but then she’ll get a sticker!”
We both smiled.
“But what face does my Aunt have?” Hope asked, serious again.

We play a game with Hope where we ask her to make different faces. Show us your happy face, Hope. Show us your confused face. Show us your surprised face.

I looked up at my sister. Her features so similar to mine, me wishing I could take her place. Her eyes shining with unshed tears. I saw tired. I saw sad. I saw serene. I saw gracious to a fault. I saw strong. I saw her, as usual, thinking about us.

“Brave, baby. That’s her brave face.”

She’s the bravest girl I know.

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Strengthen the feeble hands,
     steady the knees that give way;
say to those with fearful hearts,
     ”Be strong, do not fear;
your God will come…
     he will come to save you.” 

Then will the eyes of the blind be opened
     and the ears of the deaf unstopped. 
Then will the lame leap like a deer,
     and the mute tongue shout for joy.
Water will gush forth in the wilderness
     and streams in the desert.

Isaiah 35:3-6

The Trouble with Autism

 

Rhema has had lots of trouble with toileting lately. She’s had accidents on the bus, at school, in her bed, everywhere.  Car seat covers, sheets, blankets, clothes, socks, shoes – I could not keep up with the laundry (well, nothing new there), and I felt my frustration growing. No matter how much I put her on the potty she was having accidents on the hour, it seemed.

Last night, after bathing her for the third time that day, she climbed into a toy box and wet herself again. She did not even seem to notice what she was doing.

And Momma lost it.

I grabbed her by the arm, dragged her upstairs to the bath tub, and then yelled at her, “What are you doing to me, Rhema!!??”

Growing up, no matter what kind of trouble my sisters and I found, my father never yelled at us. He never once raised his voice to us.

And here I was screaming at my little girl.

She stood there by the tub, arms at her sides, head dropped. Her sweet face was contorted, her little lips trembling. And I died. All at once my anger dissipated leaving only sadness and shame that I could hurt her like that. I dropped to my knees and gathered her in my arms, tears on both our cheeks.

It takes so much – a big voice, an exaggerated tone, an animated face, lots of movement – to get a response out of Rhema. I’d succeeded in getting a response, but it was so not the way I wanted it.

I just held her. Those minutes holding her I finally started really thinking about what was going on. And then the pieces to the puzzle started coming together – frequent urination, wetting herself even though she’s toilet-trained, rash… and there were other signs. A urinary tract infection. That was it. Suddenly it made so much sense.

A trip to the doctor this morning confirmed it.

It’s just a UTI. No big deal, really.

But this is my beef with autism: My girl has no possible way of communicating to me if something is wrong. She can’t tell me if something hurts, she can’t tell me how she feels… and she doesn’t seem to have the inclination to tell me even if she had the words.

The not knowing if or what is wrong is one of my biggest fears.

She’s been having symptoms of a UTI for weeks now, and I’m just figuring it out. (If you’ve ever had a UTI, you know how uncomfortable they can be.) I forgive myself for that – some of the signs could have easily been blamed on “behaviors”, the new drug she’s taking, changes at school, etc.

What is hard to forgive myself for is the way I yelled at her last night. The image of her standing there by the tub trying not to cry is seared on my memory, and it breaks my heart.

Today a friend reminded me of something new I got when I woke up this morning: mercy.

“It is of the LORD’S mercies that we are not consumed, because his compassions fail not. They are new every morning…” Lam 3:22-23

And that’s what I’m holding to.

On Expectations

“Just wanted to let you know the EEG results are back. Dr. C will be calling to discuss them.”

I check my little equation: Nurse will call = good news, Doctor will call = not so good news.

I wait for the rest of Thursday.

And all of Friday…

And all of Saturday and Sunday…

“Dr. C never called,” I say on Monday morning.

“No? He’s been really busy. I’ll send him a message again to call you.”

I wait for the rest of Monday.

And now, Lord, what wait I for? My hope is in thee… Ps. 39:7

“Dr. C never called,” I say on Tuesday morning.

“No? I’ll have him paged.”

I wait some more.

“Dr. C never called,” I say at the end of Tuesday. “I’m thinking maybe the EEG is clean? Because he hasn’t been in a hurry to call me… I just wanted to know before Thanksgiving…”

“Hold on,” she says. A minute later, she’s back on the line: “Dr. C wants to meet with you tomorrow. Can you come in to Children’s tomorrow at 10?”

“Ummmm, yeah. Yes. Sure.” Thinking, this can’t be good.

 

By the time we’re ushered into his office the next day, I have already:
~held Rhema for dear life on the elevator in the parking garage (she likes to bolt when the elevator doors open at every floor
~saved her from crazy Boston drivers at a busy intersection
~extracted her from every wheelchair (some occupied, some not)
~lost my parking ticket
~watched her run in circles in the waiting room, sip someone’s soda, jump on chairs, baptize herself in the water fountain, and try to take a drink from the fish tank.

Dr. C (whom we are grateful for) turns to me and casually asks,

“So did anyone ever call you about those EEG results?”

Um….  No, dude.

For a moment, I imagine myself a spurned lover at his feet. I waited by the phone for 5 days and you never called. WHY DIDN’T YOU CALL ME?????

The image is interrupted by Rhema pushing him out of his rotating chair so that she can spin in it. As I pull her out of the chair, she taps on the keyboard on his desk.

I make a joke: “She’s pulling up her results. The suspense is killing us.”

He laughs… kind of.

Then he tells me her EEG showed no seizure activity during sleep. Good news. Wow! The med is working.

Then he goes on explain that the EEG did indeed show sub-clinical seizures during the day and during drowsiness. I knew this might be the case based on her behaviors lately, and her school nurse had called about absence seizures.

Still, as I skim the report, my hands betray me; they’re shaking.

On cue, Rhema flops to the floor and begins to melt down.

We leave with a plan to increase her current med again and a new prescription for another drug to try. Dr. C says he’s sending our “case” over to a new doctor who specializes in sleep disorders and seizures. “Maybe he’ll have some ideas.” This, he says, after working with us for three long years to treat Rhema’s epilepsy.

Why is it that I keep waiting on things and people, doctors and drugs – anyone besides the One who knit her together in my womb, colored her like a mocha frappuccino, spirited her with an iron will, named her and loved before I knew her?

Ultrasound: Rhema at 29 weeks

 

My hands steady and a peace washes over.

My soul, wait thou only upon God; for my expectation is from him. Ps. 62:5