The whole first grade

We’ve been waiting for weeks for Brandon’s official orders to come for his deployment. I’d heard about a number of people who thought they were deploying and then later found out they were not. So I started thinking/hoping Brandon would not have to go because we hadn’t received the orders.

Well, we finally got “the word”.

The good news is he doesn’t have to go until July. The bad news is he has to go in July.

It was time to tell the girls.

We’ve been particularly concerned about how Hope would handle the news. This is the girl who tries to barricade the door when loved ones leave.

june12 004 june12 005

Brandon sat her down and told her, and surprisingly she was… fine. She talked about his homecoming after the last deployment and how she wore a bunny costume that day. She said she’d miss their stinky pants fights. (Yes, that’s a game in which they pelt each other with stinky pants, a game in which Mommy does not participate).

Finally she simply asked, “When are you leaving?”

“In a couple months.”

“I’ll miss you, Daddy.”

She hugged his neck and ran up the stairs to brush her teeth.

I looked at him. “Well, that went well.

“Yeah,” he laughed. “She didn’t seem too broken up about it.”

But as I helped her get ready for bed I watched her face grow troubled and sad as the news sank in.

By the time we tucked her in she was almost angry.

“I don’t want you to go! A year is too long. A year is all the way from now until a few days after Christmas!”

It took a minute to realize she was equating New Year’s Day with a year.

“Babe, Daddy will be gone from July to July. That’s a year.”

She looked at me trying to imagine it.

I blabbed on, “You’ll finish kindergarten, and then it will be summer right? So Daddy will be gone from this summer to next summer. He’ll miss the whole first grade. And-”

The pained, horrified look on her face stopped me in my tracks. I turned and saw the same pained, horrified look on his face.

Later I thought about it and I knew what I said was wrong. So I told her as soon as she woke up,

“Daddy won’t miss the whole first grade, Hope. We’ll take pictures and talk on the phone and skype and tell him all the juicy details. He won’t be here here, but he’ll be here.”

“Yeah, I know Mom. It’s kind of like God. Sometimes I don’t see him, but I know he’s with me.”

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pushup

More than all we ask

We moved into our current home two years ago, but we have yet to hang any pictures on the walls.

As a military family it’s hard to ever really feel settled.

The husband recently received notice of pending PCS orders. Permanent change of station. It’s time to move (again). And again we have begun the process of what Brandon calls negotiating and what I call fighting with the Army. We strongly believe we need to stay right here.

We believe it so much that Brandon was willing to take on a dangerous mission in Iraq because it meant our family could stay in place. Upon his return, he continued to make sacrifices that would enable us to remain here.

It’s hard for some to understand that it takes years of searching and advocating and tweaking and shifting to create a combination of programs, teachers, doctors and therapies that work for your special child. And that it’s amazing when you actually succeed.

It’s hard for some to understand when your daughter is severely impacted by autism and has a rare, hard-to-treat seizure disorder how important it is to have doctors and teachers who know her history because they have lived it with her.

It’s hard for some to understand what it means for a mother to know that at the end of the day, good or bad, her child had the best chances to grow and learn.

It’s hard for some to grasp how unspeakably detrimental it would be for a child who desperately needs routine and predictability to be uprooted from the home, school and community she knows and loves.

I’m so proud and grateful for my husband’s service to our country. With four years left until retirement, we are praying for big things. That he will not have to deploy this year, that we can keep our family together, that we can stay here.

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Rhema has this thing she does when she wants something. It comes from years of therapy – creating scenarios that prevent her from obtaining items on her own and forcing her to seek us out and make a request, using PECs or the communication app on her iPad or (hopefully one day) spoken language. As a result she rarely helps herself to anything (with the exception of the lemonade in the church fellowship hall). She always “asks” first. She just puts it – whatever it is – in your hands.

I’ll be doing my thing – cooking, making a phone call, going to the bathroom – and she will come and dump a box of popsicles in my hand. She does this to guests and strangers alike. A friend was visiting and Rhema, without a word, put a bottle of ketchup in her hand. My friend was confused and I laughed and explained that Rhema wanted ketchup. (I quickly made her some fries to go with her ketchup).

She has great difficulty communicating the way most of us do, but she trusts. She doesn’t always get what she wants, but she trusts enough to relinquish into our hands the very thing she desires. She knows we will withhold no good thing from her. (Ps. 84:11)

Lord, these things I’m holding… my family, this home, this life here, my hopes, the future and all that has been in my life until now. I open my hands, put all in yours…

Thank you.

A little help

For years we’ve been eligible for respite care for Rhema through our military health insurance.

For years we have been unable to access that care.

I won’t bore with the details but suffice to say the system is sort of steeped in bureaucracy.

Unfortunately, whenever we mention our health insurance to anyone in the know, we are met with groans.

But God bless my husband who’s never taken no for an answer.

Once, a couple years ago, we arrived at the hospital for long-term EEG monitoring for Rhema. Somehow we thought that we’d be seeing a world-renowned neurologist. We were quickly informed that that was not at all the case. It was explained to us that this important expert very rarely came on the ward. I imagined the good doctor tucked away like a mad scientist in Harvard Medical School working to rid the world of epilepsy. Silly me to think he’d have time for us.  

After we were settled into Rhema’s room, Brandon stepped out into the hallway with his cell phone, a pen and pad of paper. Sometime later, he came back into the room and stated, “Dr. D is taking on our case. He’ll be here to meet with us in about an hour.”

Even the nurses on the floor were shocked.

Brandon has this remarkable ability to make stuff happen, to get people to see things his way. I learn from him because so many times I’ve been ready to wave the white flag, and he keeps pushing, fighting, trying. And I’m so thankful that he does.

As I’ve blogged before, my girl is strong. She’s not the little toddler anymore that I can chase down in a public place or lift off the floor in the midst of a meltdown. She is older and seemingly aware of the fact that her physical strength is a source of power. She receives intensive one-on-one support all day every day at school. But at home, well, that’s just not possible.

She has many, many good days. But then there are days when everything seems to fall apart and… I need help. (So hard to say that, but it’s just the truth).

So when Brandon left a couple weeks ago I was a tad bit concerned. A simple walk to the park – just me and the girls? Not possible. Not safe.

So he spent hours on the phone talking with supervisors of the ECHO (Extended Care Health Option) program, a supplemental program for special needs families. In short, the respite care regulations required that such care could only come from a certified medical professional employed by a home health care provider in the network. (I suspect that this plan works better for families requiring specialized health care from a home nurse or nursing assistant, not a family with a child with autism). It seemed no organization could be found in the entire state that provided the behavioral support and safety support we needed.

He wrote emails, called Congressmen in various states, had conversations with military liaisons.

Portions of his letters:

First, I want to make clear that I am addressing this issue not as a complaint, but as an issue that I suspect many military families with special needs children face. While the TriCare ECHO respite care benefit is not predicated on separations (deployments/TDY/etc.), the unmet need and inaccessible respite care benefit becomes an even bigger issue for military families during deployments or TDY assignments when the 24/7 care burden shifts from 2 parents sharing the duties to 1 parent absorbing the entire load of round-the-clock care. So, I am bringing this issue to light for the general knowledge of the Representatives and the benefit of the general special needs military community…

In our particular case, we are currently stationed in Massachusetts due to my daughter’s medical and educational needs. Our ECHO case manager has been unable to find (over 4 years of trying) any qualified agency to fill the respite care hours for our daughter due to the very specific/high standards for caregivers. As I leave again for a 4 month TDY assignment, we are trying once again to cobble together respite care for my daughter. Tricare ECHO should provide a portion of the respite care my daughter is entitled to, but like many families we are unable to access the benefit due to the language contained in the Tricare ECHO manual.”

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Well, somebody finally listened.

Because a couple days later, after nearly 5 years of trying, not one, not two, but *three* state agencies were in contract negotiations with our health insurance.

And last week I just about hit the floor when someone from XYZ Agency called:

“Hello, we have a home health aide who’s prepared to work with your daughter 4 hours a week. We’d like to meet with you as soon as possible to discuss your needs, but your aide is ready to start this Saturday.”

“… Huh? Wha-? Seriously?… Well, Hallelujah!”

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Again

“Have you told them yet?”

Brandon looks up at me from across the table and shakes his head.

“I’ve started talking with Hope. Just a little bit,” he says.

Every night, honestly every night, when Hope prays she says: ‘Thank you God that we’re all together.’ I don’t know what she knows. I don’t know what she senses. But she seems to understand  – better than me sometimes – that our family is God’s grace-gift to each of us, our togetherness is a blessing.

Brandon is leaving again.

Less than six months after returning home from a 14-month deployment, the Army is sending him away for training. He leaves in a few days and will be gone four months… until late August. He’ll miss another summer at home.

“At least it’s not Iraq,” I’ve been told. “At least he’ll be in the same country, same time zone.” It’s true.

But he will not be here. He will not be here for afternoons in the sun, hours of splashing at the mushroom pool, days at the park, trips to New Hampshire, summer evenings on the back deck of the new home. He will not be here for Rhema’s middle-of-the-night antics and doctor’s appointments in Boston and meetings and birthdays and end-of-year school programs.

In practical terms, we’re just about ready. Got neighbors on the look-out, got special locks on the doors and windows, the 6-foot tall fence is installed so Rhema can’t get out. My work schedule is set and summer programs for the girls are in place. We’re concerned about Rhema – she needs constant, one-on-one support, and she’s going through a med withdrawal and some difficult behaviors have cropped up. But we’re working on getting respite care, hoping the funding will come through.

And still, of course, we’re not ready. Not ready to tell Hope her Daddy is going away again. She has basked and glowed in his attention these past months, delighted to awake every morning and find him still here. (When he first got back from Iraq she cried if he just left to go to the store.) And Rhema… I can’t pretend to know what she thinks or understands. But I know she feels his absences deeply, and I know she is more sure of herself, more settled, when he is near.

No matter how many times he leaves, it hurts his heart to miss so much time with his family. And as for me, I will do this. But I kind of don’t know how I’m going to do this. Again. I’d finally just found my way, found my rhythm with my mate. God’s been teaching us something about what it really means to treasure one another. My husband. I have enjoyed him, I have enjoyed me with him, so much.

And this feels like a very impolite interruption.

So many friends – some of whom I’ve never even seen face to face – have prayed for us. Thank you. I’m asking, would you pray for us again? Four months should seem like a breeze compared to the year-long deployments we’ve endured. But truly, for many reasons, this separation is the hardest.

It’s funny (not really), but last year’s long and lonely summer was bearable only because I was counting on the fact that this summer would be different. Now I wonder if perhaps there are lessons I need to learn again in the heat of day and on dark, quiet nights… that I can trust the Lord to fill the voids in my life, to indeed be my joy and strength, my enough. I would do well to review lessons in humility and contentment and thankfulness and how to ask for help.

And maybe, most of all in this school of some hard knocks, I need to know absolutely that He is here, wherever we are, and all that we need.  

Again and again.

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“I am with you always…” Matt. 28:20

Homecoming Surprise

Fourteen months to the day Brandon left home,

he returned and surprised the girls at school!

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Hope was speechless. And that is saying something. She just hugged him, no, clung to him, for the longest time.

  

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Rhema, who used to never seem to notice us or greet us, was all giggles and melted in Daddy’s arms.

 

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(Here’s a link to the news story if you cannot get Youtube):
http://www1.whdh.com/video/player/?clipId=5239695&clipFormat=flv&topVideoCatNo=72115#?autoStart

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*Link to The Salem News: A Happy Homecoming

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Sweet day. Thank you, Lord.

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One Year Later: A Father and His Girls

One year ago, Brandon sat on the couch with Rhema before she left for school. He held her and explained that he was going away for a while. Rhema seemed completely oblivious – it was just another day. She had no idea that she would not see him for so long. Brandon was thinking ahead to when she would realize he was gone. He wanted her to know somehow that he had not left her.

When her school bus came, I let him take her out. I stayed back, not wanting to intrude on his goodbye to his girl. But I know he was praying that God would keep her safe. I heard the driver call out, “You’re in our prayers!”, and the bus pulled away.

I cannot pretend to know how difficult that goodbye was.

The night I went into labor with Rhema, I was alone in a bedroom in my parent’s house and I journaled my way through contractions. Brandon was deployed then to Iraq for a year, and I was concerned that he would miss out on key bonding moments with his firstborn. I wrote a prayer in my journal:

May she be the apple of her father’s eye. As he is apart from us, Lord, give him a supernatural, blessed connection to Rhema that will always be. Thank you, thank you, oh thank you my Lord for giving her to us.

Despite the frustrating barriers of autism, the lack of spoken language, and two years now of separation, God has honored my prayer. Rhema and her father have a uniquely special bond. Sometimes I think she understands the idea of father better than anyone simply because of who he is. He settles her, and in an unpredictable world that does not often make sense, she trusts him. If he is there to love her, she’ll be o.k.

They always just pick right back up where they left off – as if no time has passed between them. When he came home last May for two weeks of R & R, we met him at the train station. I let Hope run ahead to greet him while I stayed with Rhema in her carseat. Rhema was fiddling and fighting with her buckle, ready to bolt. For a moment she did not notice the hands trying to help her undo her buckle. But then she stopped, looked up and saw him. A wave of laughter overtook her; she threw her head back and giggled herself right into his arms.

Brandon's homecoming in 2005

Brandon's visit in May 2010

 

That morning a year ago, Hope and I watched Brandon load his bags into the car. He had already explained to her why he had to go away for a while – “To pre-tect us!” she would squeal enthusiastically. To us, Hope has always been like a prized exhibit in a museum. Too precious. A rare, irreplaceable gift. She brings us inexpressible joy, and when you’re away from her you feel like you’ve missed out on something. I don’t know how to go a day without her Hope-ness.

I didn’t know how my husband was going to manage a year without it.

When it was time to go, he said, “Give me a hug, Hope,” arms outstretched.

She came running, and as she wrapped her arms around his neck as tight as she could, she said,

“I’m giving you a big DINOSAUR hug, Daddy!”

And I watched the man hold her and weep. In over a decade of marriage I’d never seen a hooah-hooah-fly-helicopters-jump-out-of-airplanes-soldier cry like that.

This past year Hope had her first first day of school – lost her baby fat and grew tall – turned three – had asthma, swine flu and pneumonia – learned to write her name- learned to swim – turned into a princess and became a fashionista – prayed for her Daddy everyday.

This past year Rhema changed schools and medications-  turned six – learned to ride a bike – healed from lead poisoning – learned to say many new words – learned to trace the letters R and H – lost her first tooth – matured into a lovely young girl.

We cannot wait for the day when he comes home to stay.

B, I thought you might like to see how much your girls have grown up to this past year:

Mail Call

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.!!!!!!

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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?

Connections

I had forgotten how difficult communication can be when Brandon is deployed. Those first couple weeks after he left… several times a day I would flip open my cell phone to give him a call, forgetting that I could not reach him.

We have to wait for a call or e-mail from him, never knowing when that might come. When he does call, the connection is bad – there’s a delay, and so it seems like we’re talking over each other and most of the time I cannot hear what he’s saying. And of course the calls are never long enough – we talk the big issues fast:

How are the girls? – Fine, How are you? How are you? – Fine, Fine, Where are you? Where? Did you send a check to so and so? … Hello?

Then the call drops and there’s silence.

I don’t mention that Hope’s getting really tall. That she prays for her Angel Cake everyday. That she’s talking back a lot and I’ve got to deal with that and it’s totally new because I’ve never had a child talk back before. That sometimes I just will not do, she just wants her Daddy, and she tells me so. That she is a huge help to me. That she has an incredible memory. That she wants to play the violin… so we better start saving our pennies. That I told her I don’t want her to grow up and turn three years old in 13 days. That she put a patronizing hand on my shoulder and said firmly, “Sorry, Orange Blossom. I’ve got to.”

I don’t mention that Rhema is really beautiful. (He already knows that. But every day I think, Wow, she’s beautiful.) That she’s not sleeping again. That the EEG results are in, and I had to wait all weekend for the doctor to call. That I worry about her relationship with her sister. That she accidentally ate an artichoke!!! That I wonder if she wonders about him and where he is. That she managed to escape again (but don’t worry, I found her). That the other day her teacher said she repeated, “Hope”, “Mom”, “Dad” when looking at our pictures.

I don’t have time to mention all of the gifts and blessings that have been poured out on us. The generosity of people -unbelievable! – the kindness they’ve shown us. That I do get lonely sometimes. And overwhelmed. That I’ve got really, really good friends. That one of our favorite old restaurants opened up in the next town over. That we’ve got our routine, our pattern, things are just fine. That God is so good! That I wear his old Army T-shirts and sweats to keep him close.

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Every now and then we get to video chat (using Skype). We’ve only been able to do it a couple times since Brandon’s been traveling in northern Iraq. Before he left, he took with him an extra webcam that Jenn sent us. It has been extremely important in helping us stay connected. (Thank you, Jenn!)

I thought that the video chat would be great for Rhema, especially since she does not do well with phones. It was initially disappointing – when Brandon would skype with us, I could not get Rhema to even look at the screen and see him. (Darn, we sure could use some joint attention!) He would call her name over and over, and I would try to get her to look, “Rhema! It’s Daddy.” She would not look, she’d just run away.

The last several times we got to Skype, I closed Rhema in the room. Even though she was bouncing around, never staying still long enough to attend to the computer screen, I told Brandon just to talk to her. “At least she’ll hear your voice,” I said.

And so he talked.

He told her he loved her and missed her and why he had to go away.

She never once showed any sign that she heard him.

Then, the last time that we skyped, several weeks ago, Rhema actually sat in my lap for a few minutes.

I dangled a popsicle above the computer screen.

She looked.

And she saw him.

And he said, “Hi, Rhema.”

And she said, “Hi.”

Another really good gift

I got good news.

But first… the husband recently sent me something he wrote just before he left on his deployment. Interestingly, I could not, would not write details about his departure… (almost too painful, too personal for words)… but *he* did, and now I want to share it:

 

Aug 09

Why Weep?

I cannot seem to put my finger on it.

My Great-Grandmother was the first Christian in our family—or at least the one that sparked generations of Christian families with our last name. When she gave her heart to Him in the 1960’s, she began to live for Jesus and pray for her family. So simple. So powerful. One by one, her children, grandchildren, great-grandchildren, and, if only she could see them now, her great-great-grandchildren learning Bible verses and on their way to knowing Him. How the course of generations of our family was changed.

I last wept when she died in 2003.

I guess that is it. It is grief. Loss.

How do I say goodbye to my kids tomorrow? How do I put Rhema on the bus and watch her ride off to school for the last time? (Dear God, that hurts so bad to even think about.) Does she even know what awaits her over the next many months? Will she think I have abandoned her? How do I hug Hope goodbye on the porch and have her say, “I love you, Daddy.”? How do I walk away from that little bundle of flesh and all of her growing, experiencing, learning, creating, laughing, hugging, teasing, smiling? Will she continue to thrive without me? Doesn’t she need her Daddy?

How do I leave my confidant, my buddy, my comfort, my intimate? How do I leave her to do all of the exhausting work? Have I done enough to make sure she will be ok? How do I stay close to her over these next months?

As I wept today (yes, like a big baby), I could not help to be drawn to Jesus in Gethsemane. (It sounds trite, but sometimes those stories seem to lose significance with us because we hear them so much, but in hard times they often come to life and bring new meaning.) My trial can’t come close to comparing with Jesus’ anxiety, but it gave me great comfort to know that my Jesus has experienced my small degree of pain through his big degree of pain. All I could do today to release my pain is say his words, ‘Lord, not my will, but Yours be done.’

May Your will be done in and through our family. Please use us, Lord, for your purposes. May this time be redeemed day-by-day. May we embrace with all our being the purposes and assignments you offer us during this time.

Psalm 23. The Lord is my Shepherd. I shall not want.

 

Now, the good news: For the past couple weeks Brandon has been undergoing special training in Georgia before he leaves for Iraq. We now know that he will not deploy to Iraq until after Columbus Day, and that he will be free to visit us Columbus Day weekend! We will have three precious days to spend together before he goes overseas. Although, I dread another goodbye, I know this is an unexpected, good gift and I cannot wait for the girls to see him!

Lengths

Months ago I read a post by Andrea that really resonated with me. She posted a video clip about The Horse Boy – the story of a father who traveled all the way to Mongolia so that his son with autism could ride horses and visit a shaman. While we cannot all hop on a plane to Mongolia, the story highlights the lengths we as parents are willing to go to help our children.

It made me think of my husband, Brandon. He leaves in four days for training in Georgia and then on to Iraq for a year. He goes because he loves this country and is committed to serving her. He believes in the cost for freedom, and he’s not afraid of sacrifice.

But he leaves for one other reason: girls

 

Three years ago, the Army sent us to Boston. It turned out to be, in our opinion, the best place we could be in terms of services and medical care for Rhema. She attends an excellent school for children with special needs – a school that currently has a five-year waiting list. She has been blessed with some of the best teachers eva at her after-school therapy center. The skill of her doctors at Children’s Hospital is unmatched; they are persistent and cutting edge.

Last year, the Army came a-calling and said, “Sorry kids, it’s time to go.” (I’m oversimplifying this for the sake of brevity). We knew that we would have to move, and that Brandon would deploy. The Army has something called the Stability Transition Team – it’s a job that involves operating with a small military team “outside the wire” to train and counsel Iraqi police/border patrol. It’s a dangerous and unpopular job – so much so that incentives are offered to deploying soldiers who will do this mission.

One incentive is getting to choose where you live.

You guessed it. Brandon agreed to take the job in exchange for our family getting to stay in the Boston area a little longer. He was getting deployed no matter what, but by taking on this mission, he essentially gave us 15 more months for Rhema to benefit from some of the best schooling, services and medical care in the country.

There are two reasons I’m sharing this information in blogland.

1) By chance a teacher, therapist, respite giver, or aide of a special needs child may come across this post. I want you to know how grateful we are for you, how much we depend on you, how much your work and care impacts our entire family. I want you to know that we will go to great lengths just so our children can learn, thrive, be who they are, and enjoy life to the fullest. Thank you, thank you for your life-changing work.

2) There’s a parallel to this whole concept of sacrifice that just blows my mind. We, as parents, are willing to put ourselves in harm’s way so that our children can live their best lives.

Andrea writes, “Is there a more powerful example than the cross? For God so loved the world that He gave His only begotten Son, that whoever believes in Him would have eternal life. The Easter message is one of sacrificial love. Jesus, who is love, was motivated to go where no man has gone–literally to hell and back–to save you and me…

When we do anything resembling that, whether by affording some outrageous therapy, homeshooling ’til we don’t recognize ourself in the mirror, or driving illogical distances to a qualified therapist, we are following Christ, sharing in his suffering, and becoming more like Him. Go ahead and spill yourself out for someone you love; you’re in good company even if the world doesn’t understand.”

God will go to any length (even death) – just to reach us, to save us, to demonstrate His love for us. The next time you feel unloved or disesteemed, consider this.