A Marathon Season

My daughter’s cremains are in a bag, in a box, in a box, in a bag, in my living room, mostly because no one explained how hard it would be to gather up the gumption to scatter them, even though Phyllis and I had already decided where it would happen. So for now, they sit, slightly hidden in the tote bag I brought them home in from the crematorium.

Who knew?

A marathon is run one step at a time.

An excursion of 1,000 miles begins with a single step.

A long haul trucker runs his route one mile at a time.

I know all the clichés, most of which only scratch the surface in explain how hard all of those journeys truly are.

Or that there are gaps in the journey, empty spots filled with nothing but blank stares and open wounds.

I’m still behind, still trying to catch up, still grateful for understanding clients and friends. My lapses have put more than one project’s schedule at risk, and I’m hoping when all is said and done they want to hire me for future projects. I certainly wouldn’t blame them if they didn’t.

I’ve put my own writing on hold, and I’ve sometimes edited far longer during the day and into the night than I should. But of the six projects desperately behind schedule, three have been turned in, one is slightly on hold, and another is close. One more will be tackled in short order along with two new ones waiting in the wings.

I most certainly didn’t have time to take six weeks to stare at the wall…or the floor…or a blank page. But even if I tried to work, my brain did not cooperate. Reading the same page five times, unaware of anything there, does no one good.

I couldn’t read. I couldn’t even pray. There were just no words in my life.

Then…one day…I realized my brain was coming back to life. Adjusting to its new reality.

It’s odd, this new place. I no longer have regularly scheduled trips to Phyllis’s house. I tried at first, until we both realized that our coming together to talk about Rachel was delaying our healing. Our day-to-day had slipped into a kind of normality…until we talked or saw each other. Then the pain came rushing back because we both loved her so deeply and knew the other did as well.

We had lunch this week. We’re better. But the edge is still there, and it’ll take more time to dull.

It’s odd, this new place. I don’t know who I am anymore. Oh, my personality hasn’t changed much…still Ramona…and I have close friends who love and support me. But when you’re the parent of a special needs child, your identity is more completely wrapped up in being “Rachel’s mom” than many parents can grasp. From the time average children can rollover and babble, their journey is toward independence. They move away from their parents, then join them in the regular world. School, sports, ballet, music, jobs, grandchildren.

With Rachel, her very existence depended on our care. She couldn’t eat, drink, talk, walk, or do anything for herself. For almost 29 years, we groomed her, fed her, changed her diaper. (Over her life, she went through about 53,000 diapers. No typo. 53 thousand diapers.) She could not be left unattended at any time. She was too fragile to be more than a room away, in case she choked, scratched herself, or went into a grand mal seizure.

I took great joy in clipping her nails, massaging her legs, even cleaning the jam from between her toes. Even the gritty parts—such as cleaning out her nose or manual bowel extractions—built into our intimacy with each other.

When we changed her clothes, we had to take care to smooth out all wrinkles in the sheets, towels, shirts. We kept a watch on every inch of skin, on guard for pressure sores. Serious vigilance that paid off. Until the day she died, nurses and doctors complimented us on how great her skin looked, remarkable for someone who lay on their back 24 hours a day.

I sometimes wondered if she fussed because something itched or tickled. The next time you have the urge to scratch or flick away a bug or a tickling hair, stop before you do, and consider what it would be like NOT to be able to do those things…or tell anyone about them.

We were her advocates—and she was ours. Adding as much to our lives as we did to hers.

And, oh, that smile! That laugh! She brought into our world the purest of all joys.

It’s odd, this new place. Where none of that exists. And this marathon isn’t just about “getting over” her or “getting through” the pain. Truth is, neither of those things will happen anytime soon. That’s just a reality I’ve a

ccepted.

Instead, this marathon is about finding a center in this new place, a new identity, a new grounding. Work is part of that. And friends. Releasing myself to do things I’ve not be able to do for many years, such as long trips, maybe even overseas. Maybe even a new job in a new city.

 Who knows? Once my world was Rachel…and work.

In this odd, new place, the unknown awaits.

And tackling it is a marathon in and unto itself.

Pineapple-Apple Chicken

I love this recipe. It sounds more labor intensive than it is. If you brine the day before, it takes about an hour from start to serving. Chopping the apples takes about 10 minutes. Waiting for the sugar to dissolve, the apples to soften, and the pineapple to heat takes 15-20 minutes. 

INGREDIENTS, except for brine (see below)

Chicken tenderloins, brined, enough for one layer in a 9 x 13 baking dish, approximately 6-8 pieces.

1 16-ounce can pineapple chunks

½ cup water

¼ cup brown sugar

3 Tablespoons ground ginger

1 teaspoon nutmeg

2 Tablespoons cinnamon

3 small apples, cubed

1 cup unsweetened coconut flakes

1 Tablespoon Worcestershire sauce
Grated cheddar cheese

Brine

¼ cup salt

1 Tablespoon Worcestershire sauce

¼ cup brown sugar

1 teaspoon ground ginger

1 clove garlic, chopped

1 cup water

Brine prep: Mix ingredients in small saucepan over low heat. Stir until salt is dissolved. Cool to room temperature. Pour into storage container (I use a one-gallon ziplock bag). Add chicken. CHICKEN MUST BE COVERED COMPLETELY. Brine for at least four hours. Overnight is preferred.

MAIN PREPARATION

Heat oven to 400 degrees. Grease a 9 x 13 baking dish. Set aside.

Drain pineapple, reserving the juice. Set aside. Combine juice, water, sugar, ginger, nutmeg, and cinnamon into large saucepan (at least 4-quart). Simmer over low-to-medium heat, stirring constantly, until sugar is dissolved. Add apples. Simmer until apples are soft, stirring occasionally.

While mixture is stewing, remove chicken from brine and pat dry. Layer the tenderloins in the bottom of the baking dish.

Once apples are soft, add coconut and pineapple. Simmer until thoroughly heated. Pour over chicken, spreading the apples and pineapple evenly over the chicken. Bake 20 minutes. Sprinkle cheddar cheese to taste over the dish. Bake additional 10 minutes.

Serves approximately 3-4 people, 2-3 tenderloins per person.

I serve the chicken and fruit over organic brown rice with almonds, with a side dish of green beans or zucchini. 

"He'd Still Been God"

First, let me thank everyone who commented on my last post. Y'all are awesome. And I share your grief and hope. Your words meant the world to me, even if I couldn't respond at the time. Grief remains unpredictable and cruel...so naturally, I want to talk about music.

I've been involved in music, in some form or fashion, since I was six years old. Piano lessons came first, then band (I played the flute/piccolo) and choir. I joined my first church choir when I was fifteen; chorus at school followed. Although I walked away from music as a livelihood, creating music has always been a part of my life.

So it came as no surprise to those who knew me that I would test all those "what children are born knowing" theories with music. When I became pregnant, I inundated my belly with songs. And Rachel was, in fact, born knowing some of the songs. (How I know is a topic for another blog...but she did.)

Rachel was my musical miracle. It was a major part of her life as well: it calmed her when she was upset and soothed her when she was sick. She became excited and thrilled when she heard me sing - so much so that I dared not have her in the sanctuary when I sang a solo. She'd squeal so loud with pure joy that I'd lose focus and start giggling.

Needless to say, I had a hard time with music in the first few weeks after her death. I still have trouble with some songs...and will for a long time. But Rachel wasn't the only one who was helped by music. Music has always been my solace as well.

A few months ago, I came across this article about the value of the classic hymns of our faith. I've always loved the hymns, especially in some of the newer arrangements. And the words will move me like few choruses will. But I never overlook the theology in "modern hymns" either...or their ability to bring solace.

I'm a fan of a Southern gospel group called Greater Vision. (I also like the Killers, Coldplay, Howard Ashman, Dwight Yokam, and Glenn Miller...again...story for another day). The songs GV chooses to record can often make me absolutely shout with faith and joy. One of their songs, "He'd Still Been God," has, in particular, helped me during this time. The "theology" behind the lyrics is that Jesus would have been God, no matter what he did. While he performed miracles, he didn't have to. He would have still been God, come to offer us salvation, miracles or no.

Jesus healed people out of his compassion and mercy.

He stills does. That God led me to a place where I would create music for my unborn child, with the result that music would aid her like nothing else would, is to me nothing short of a miracle. One born of mercy and compassion that would make her life and mine much easier. 

But if I worship and love him, and I do, it's not because of the miracles in my life. It's because he was and is God.

And there is infinite solace in that as well.

When an Introvert Grieves: I Am an Actor

The show was A Few Good Men. I was a company member, hanging out with the actors backstage during the show, when I saw a transformation that will remain in my mind for the rest of my life.

He played a young lieutenant, harsh and by-the-book. The actor was anything but. We were kidding about, laughing, when he heard his cue. He excused himself, stepped up to the entrance, bowed his head and took a deep breath. In the next five seconds, he physically, mentally, and emotionally turned into the lieutenant. He looked different, and when he stepped out onstage, he sounded different.

He transformed.

This is me, in the weeks following Rachel’s death. Every time I step out of the house, I am “onstage.” I straighten myself, mentally and emotionally, and I compartmentalize the grief. When someone asks, I respond, “Thanks, but I’m fine.”

This isn’t an attempt to deceive, or even to keep everyone at bay, which is my initial instinct. It’s self-preservation—and it’s the truth. At that moment, I’m fine. And I don’t want to talk about it.

As a friend of mine warned, grief is a “wily beast,” gripping and occasionally unexpected. The grief remains raw and real, and triggers appear to be everywhere. Sometimes it takes a major effort not to collapse into tears. Which is what happened to me Easter Sunday at church. The kids had a program, and when they started to sing, I lost it. I left, composed myself, and held it together long enough to get through the anthem (I sing in the choir). After that, I bolted.

I don’t know if it’s because I’m an introvert…or just odd. But I do not want to talk about my grief, especially in public. I KNOW people care, and I don’t mind if they express it.

Because the truth is…I don’t want to talk about. And I do NOT want to show it. This doesn’t mean I’m not feeling it; it just means I’d rather do my grieving in private, or with a close friend or two. But I did want to say a few things here, so that those who care might understand how I feel.

1)   I lost a child. So did Phyllis, who was, in all the important ways, a second mother. Not a handicapped child, or a child who was expected to die. A child, and the feelings are as raw as if she’d been “normal.” She will always be gone, and there is a PERMANENT hole in my life. It will get easier to live with, but it will always be there.

2)   Just because she was handicapped did not make her death “easier.” Yes, I’ve lived for almost 30 years with the idea that I would outlive her, but after all this time, we got complacent. It MIGHT have been easier had she died sooner, or after a long illness (such as she had two years ago), but I don’t know that for certain.

3)   Because of this, her death was UNEXPECTED. She was well Monday. Baseline. Life as normal. Tuesday she started acting uncomfortable, but no more than if she’d been constipated or had an upset tummy. Wednesday, she was worse, but we still thought she might have a UTI, but little more. By Thursday morning, we’d removed life support. THIS WAS SUDDEN!

4)   Yes, I believe she’s with Jesus. Probably dancing with my mother. This does NOT make grief easier. We’re all still adjusting to the changes in our lives. That takes time.

5)   Words often meant to help actually hurt. We know people want to help. We understand. But you don’t have to, and saying anything that hurts only makes the grief—and our “guilt” that we are not “over it”—worse. The BEST thing anyone can say is “I’m sorry for your loss. If you need to talk, I’m here.” Anything more is just risky for us.

6)   We need to hibernate. That’s OK. Don’t feel as if we need to “come out of our shell.” No. We don’t. We need to hibernate and heal in our own ways in our own time. We are intelligent adults. If we need help, we know how to ask.

As I write this, we’re approaching the two-month anniversary of her death. I still have periods in which I’m non-functional; Phyllis still has days. We are both better. We are both trying to get back to day-to-day living. I, for one, am going to be broke shortly if I don’t. Our “regular” lives must go on.

And the best thing anyone can do for us at this point is to do exactly that. Treat us as you would every day, even if you know that I’m “acting.” Simply leave a space open for us if we suddenly burst into tears. Don’t try to “say the right things.” It’s OK to be silent and wait.

To be honest, there are no words that will help, no actions. It’s all about us working through what we have to, and in the time it takes. Whatever time that is. Until we're fine, for real.

More than a Bug on the Wall

I was watching a television show the other day when a small gimlet of conversation landed on me with a rather emotional thud.

"Grief takes its own path. And it's a different one for every person."

It was said in regards to a woman who'd had a particularly calm reaction to the death of her husband. But it could definitely apply to many people. Including me.

Grief is universal. Everyone experiences it, if life is long enough. Loss is ALWAYS hard, but not everyone walks the same path. And we don't always walk the same path with each loss. My mother died in November 2014; my daughter died in February. My grief for them is remarkably different, and, yes, this surprised me. Mother, in turn, lost her mother in 1985, and missed her every day. My dad died in 1996, and I'm convinced Mother never quite got over that loss. One way that showed up was that she couldn't bring herself to sell the car he bought for her just before he died.

And I've come to realize that grief has blindsided me in ways I didn't expect. One of those is an intense forgetfulness, a loss of memory that is sometimes crippling. I try to recall something and it's like staring into a dark tunnel. I know what I need is on the other side, but I can't seem to get there.

So if I owe you ANYTHING--email, blog post, phone call--please remind me. Although I have a calendar I check every day, I've discovered that I haven't written everything down, relying one a memory that until recently was quite good.

Not now. So don't hesitate to ask. It will not bother me for you to do so.

That memory loss can be short term as well. I often forget I made tea--and sometimes lunch. I call editing projects by the wrong name, and blend due dates (NOT a good thing). 

I honestly didn't expect it to linger the way it has either. Some days I am quite chipper and productive. Others...not so much. The sadness comes out of nowhere and knocks me off my carefully reclaimed high ground. Unpredictable and dreadfully hard on the work schedule.

@2016 by Jerry Box

Friends have been patient, although I'm sure they get tired of me suddenly staring off into space as if I've spotted a large bug on the wall.

The good news in all this is that there ARE good days. A lot of them. More as time goes along. More good news is that I have great friends who have both left me alone (when I need it) and listened to me mourn (when I have to). My church has been spectacular. And God is there too, helping me back toward the high ground. But that journey to the high ground takes time, through the good moments--and the bad.

I tend to only socialize during the good times. So when someone asks how I'm doing, I'll say, "I'm fine." And I am. Truly. One step on the path at a time.

Where I've Been; Where I'm Going

Most folks who follow me on Facebook already know that the last couple of weeks have been consumed with the details and grief of my daughter’s death. Rachel, who had outlived the doctors’ prognosis by almost twenty years, was twenty-eight. Her memorial service was on March 5^th, a celebration of Rachel’s life that drew far more people than I expected.

This was a blessing, making it a day full of hugs, reassurances of love, and plans to come. Reminders that there is still a future for the rest of us can make such a time a touch easier.

Rachel was a true joy to be around, and I will miss her more than I can say. Going on with life will not be easy, as anyone who’s experienced great loss knows all too well. I walked a similar path myself, only 16 months ago, when my mother died. Six months passed before I began to write about her life, remembering especially what she’d left behind: her wisdom, practicality, faith, and integrity, along with a mountain of handmade quilts.

As all of those things began to weave together, her legacy formed clearly in my mind, and I began to write devotionals about Mother. The result was a book, My Mother’s Quilts, which releases tomorrow, March 8^th…only three days after Rachel’s memorial service. My author’s copies of the book arrived at my house the day Rachel died.

It reminds me of an event a few years ago, when I called my writer-friend Krista Phillips to offer her a contract on a book. My call came around the same time that she found out that her youngest daughter needed heart surgery to survive. It put the whole “publishing thing” into perspective for her…and me.

Perspective: That life is filled with extraordinary goodness and unbelievable sadness…and that God will help us through all of it, with strength and wisdom. He will guide us on the paths forward, even as our steps wander uncertainly.

My grief is still raw and unpredictable…but I also want to honor and respect those who have stood beside me. So, yes, I will try now to focus on deadlines and marketing, which are a solace as well as a responsibility. And the Lord, who gave me this gift that has gotten me through so much as well as providing a way for me to honor all those who have gone before.

2016: A Time to Bloom

When asked about a “word of the year” in 2015, I chose FLAME. I summed up the reason in the last line of this blog: “Flame. An indication that I’m putting the sad times behind me and lighting a fire under my career, my faith, and my future.”

I wasn’t sure what that would look like. My mother had died in November, and my job had changed dramatically. I chose that word on the spur of the moment at a time when I was still reeling emotionally and mentally. I hung a portrait of a firebird in my office as inspiration. And I had no idea that by the end of the year I would have put together a plan to launch my freelance career to the next level.

So when I was asked about a word of the year for 2016, I impulsively responded: BLOOM. I stared at it a minute, but realized it was a good choice. I thought I knew what it meant (a flower), but being the nosy editor I am, I went to the dictionary, where I found these alternatives:

• The state or period of greatest beauty, freshness, artistry, or vigor 
• The period of greatest prosperity or productivity 
• A mass of wrought iron from the forge or puddling furnace 
• Also, a moist, lustrous appearance indicating freshness in fish. 

Yeah…I’ll pass on that last one. But as a word to indicate a time of great prosperity or artistry? I’ll make that my vision for the year. To grow, to prosper, to produce my best work.

BLOOM.

Let’s get to it.