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.”

*

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.

1028001351a

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.”

.

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!”

.

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.

.

“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!

.

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

  

.

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

 

.

(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

.

.

*Link to The Salem News: A Happy Homecoming

.

Sweet day. Thank you, Lord.

.

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.!!!!!!

.

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?