With Hope

This is not at all

How we thought it was supposed to be.

We had so many plans for you

We had so many dreams,

But now you've gone away

And left us with the memory of your smile.

Nothing we can say

Nothing we can do

Can take away the pain, the pain of losing you.

 - "With Hope" by Steven Curtis Chapman

A year ago today was a Wednesday.  It wasn't a normal Wednesday.

Fresh on the news that Ryan was going to come home under hospice care and that maybe we'd get a few days to cram in as many joyful memories as possible, I was trying to figure out a way to sneak a pool into his backyard, get it filled, get it stocked with fish, and give him one last chance to go fishing...an activity he dearly loved.

I was exhausted.  I'd woken up suddenly just before 5 am.  Not the bleary eyed roll-over-and-go-back-to-sleep waking, but the kind of waking up where you are suddenly alert and untired.  I sat up in bed and thought, "Ryan.  Something's going on with Ryan."  I considered calling his mom, but it was five in the morning and a phone call seemed intrusive.  So, I prayed and I waited to feel sleepy again.  It took about a half-hour before I could lay down and get a few more minutes of sleep before going in to work.

So, there I was later that morning...running around trying to figure out how to help Ryan's parents make his final days at home the celebration they wanted it to be...when my phone lit up with his mother's name.

"Tara, where are you?" 
"I'm at work, with the kids."
"But where are you?  Are you driving?  You're not driving, are you?"  And I knew.  I knew, but didn't want to know and didn't want it to be true, so I pretended not to know as if that would somehow change reality.
"No, I'm in the kitchen.  Do I need to sit down?"
Through tears, his mom said, "I wanted you to know that there's another angel in heaven now.  Ryan...a few hours ago, around five o'clock this morning.  I wanted you to hear it from me first, I didn't want you to find out another way."

Did you know that when your heart shatters, you actually feel it happen?  That the pain is physical, right in your center, and that all at once the world becomes both crystal clear and a blurry mess?  That you hear your own breathing stop...and even when it starts again you aren't sure that it has?

The details of Ryan's last night and final hours are not mine to share, that story belongs to his parents.  They were both with him, holding him and loving him as he peacefully and, finally free of pain, gracefully slipped away from our world.   It wasn't until the next day that I realized my sudden waking on August 10 coincided with the time that Ryan's soul was on the way home.  A convenient coincidence?  Maybe.  Maybe not.  I've chosen to take it as a validation that choosing to love a child who is not your own means something, something important and something significant to the universe.  If you disagree, please keep it to yourself, because I NEED to believe this in order to cope with the unimaginable grief that comes with losing a child.   I need to believe this so I can continue to choose to love other people's children, rather than protecting my heart from the possibility of ever having to feel this again.  I cannot be a good nanny if I cannot choose to love the children entrusted to my care...so I have to believe that the choice to do so matters beyond the walls of the homes where I work.

And now, somehow, a whole year has passed since that sunny, grief filled morning.

Never have I known

Anything so hard to understand.

Never have I questioned more

The wisdom of God's plan

But through the cloud of tears

I see the Father's smile and say, "Well done."

And I imagine you

Where you wanted most to be:

Seeing all your dreams come true

'Cause now you're home

And now you're free

- "With Hope" by Steven Curtis Chapman

I thought that by today, it would hurt a little less.  I thought that by today I'd be able to hear someone call a little boy "Ryan" without tears clogging my throat and that I'd be able to drive home at the end of a work day without those tears spilling down my face.  I was wrong.

Grief, I've learned, can bring out the best and the worst in people.  I have seen some beautiful acts and relationships come from this loss.  I've watched an extraordinary school community lift up Ryan's parents and family and carry them through this year.  An incredible hospital staff that has stayed in touch and not forgotten a little boy who was but one patient among many.  Two desperately grieving parents reach through their tears and create a non-profit that will, someday soon, provide cancer stricken children with outdoor adventures just like their son loved to have...turning their grief into something productive and supportive for families walking a similar journey to their own.  Countless people who have never met Ryan, Kristen, or Bob but who allowed a very sick little boy into their hearts and who find ways to honor and remember him because they grieve him, too.

I've seen the ugliness that comes when emotions are strong and people do not know how to respond.  The person who ranted, just a few weeks after we buried Ryan, that friends offering me a shoulder to cry on were "indulging in drama" and that no real friend would do that.  The friends who made a point of telling me they didn't want to hear about his journey because it was "too sad" for them to bother with, they only like happy things.  The so-called friend a few months ago who told me that she..."and others"...were of the opinion that the only reasons I bring up Ryan are to get attention or to have people feel sorry for me, commentary which left me feeling like I had no right to express my emotions or to remember him with others for fear of being so harshly judged or becoming the subject of further gossip and derision.

And, while it was painful to realize that some of the people I'd thought of as friends were not truly friends...were not people I could lean on when I needed it, were not people who were willing to allow me a full range of human emotion...I've also had other friendships strengthened and renewed.  Some of those people, I've never met in person.  They've merely reached out through the internet and offered their love, prayers, and ongoing support to me and to Ryan's family.  The friend who, even though she never met Ryan, has helped raise money for St. Jude's in his memory.  A friend whose own infant son is buried just yards away from Ryan...who always knows the right thing to say because she knows a greater grief than I do and who, when she visits the cemetery, sometimes stops in to visit Ryan, too.  She doesn't have to, but she does, and it means the world to me.  The friends who don't run away if Ryan comes up, but who welcome his presence in our conversation even if it means that tears may follow.  The ones who bring him up themselves. The ones who, today, flooded my facebook and email with messages of support and sharing how they were remembering Ryan.

I've become a better nanny.  There are no moments that I take for granted any longer.  Even in the midst of the mundane, the irritating, the frustrating, the exhausting, there is a bone deep appreciation for the ability to have the moment, even if it is not sweet or joyful or giggling.  They are here...and no matter how difficult a day with them might be I am always always grateful that I have the opportunity for that day with them.  It is a gift, I now know, to have them here to give those frustrations, those exhaustions, those irritations.  I am able to more fully appreciate every single moment, not just the ones that are filled with laughter and fun and cuddles.

I've also learned that I really can't fix everything.  I want so much to be able to heal the indescribable pain Ryan's parents experience with every breath they've taken since their brave, beautiful boy died.  Kristen and Bob are two of the kindest, most genuine people you could ever meet.  They always have been and I am in awe that they still manage to be so.  As much as I miss Ryan, it is nothing compared to what they are going through.  I can't heal this for them, nobody can.  We can only be there for them, and help them face each new day without him and hope that they can feel how loved they are.  We can remember him with them, cry with them, laugh with them, and celebrate Ryan with them. We can allow them all the time and ways they need to cope.

We can cry with hope

We can say goodbye with hope

Because we know our goodbye is not the end

We can grieve with hope

Because we believe with hope

There's a place

By God's grace

There's a place where we'll see your face again.

- "With Hope" by Steven Curtis Chapman

I've learned, relearned really, that for me grief is not linear, it is circular and twisting.  It doesn't progress through the famous five stages in any predictable order. Some days, it is overwhelming and stuns me with its force when I least expect it.  It is solitary, separating, lonely. People don't know what to say or are afraid to say the wrong thing, so they often say nothing. They get frustrated that their words of support or comfort have not...cannot...magically lift the sadness and anger away and so they do not offer them.

It has strengthened my faith.  I don't believe that God causes death and destruction in the world, and I do not even begin to try and comprehend why He allows it to happen when He does have the power to prevent it.  I have, though, learned to accept that some things truly are beyond explaining and, more, that I do not have to defend this faith to those who find the death of a child a reason to not believe in God.  I don't understand why Ryan died...but I have to believe there is a reason even if it is a reason I cannot understand.

I've learned that love is worth it.  That at the end of the day, what I will regret are opportunities not taken, kindnesses not done, love not given freely, help not offered.  No matter how much any of this hurts, no matter how wretched it gets, I will never regret loving that little boy.  If I had to do it again, knowing the outcome, I would still choose to love him and to have been his nanny. 

I do not know if this kind of grief is something that has a finite end in this life.  I don't know if any of us who loved Ryan will "get over it" or "get past it."  I think we will adjust to it, but it will always be a part of us.

And I know that, someday, we'll see him again.  Whole, happy, laughing, free of pain.  We'll see him again.

That's the only hope that makes this survivable.











 

Red, White, and a tiny bit Blue

 It was the plastic star spangled tablecloth that did me in.


Every summer, for the past 5 summers, the tiny people and I have thrown a "Red, White, and Blue Playdate Party."  It started our second summer together as a themed excuse to have lots of friends over all at the same time.  I thought it would be a one off, but the children had other plans...and thus, a tradition was born.  We've had plenty of other variously themed playdate parties, but one thing has been constant:  Every summer, some time near the 4th of July, we host this one.

This year, there was a niggling bit of sadness tucked into a corner of my heart as we planned our party, our fifth...and final...Red, White, and Blue fiesta.  As we sorted through Pinterest for the children to choose which colorfully themed snacks, games, and crafts we'd have I was awash in memories of past parties:  The year the Twincesses had just learned to walk and spent most of the event fighting over a wagon (it made for adorable photos!).  The year that weather sent us scurrying inside and the children all picnic'd around the area rug in the den, unfazed by the dark clouds outside.  Two years ago, when I taught all three (then ages 3, 3, and 5) to recite a portion of the Declaration of Independence.   Last year when, for the first time, Little Litigator took a seriously active interest in every detail of the party planning. 

This year has memories just as sweet.  The day was a whirlwind of preparations, people coming and going, a backyard full of nannies, moms, kids, sprinklers, water balloons, beach balls, and the noises of happy, frolicking children. 

After the last guest had left, as I began to clean up the detritus of devoured snacks and of crafts we never got around to doing, I silently congratulated myself on simply enjoying the fun of our guests rather than allowing myself to get caught in the grief of remembering that this is a "final memory"...the last of its kind with these particular children. 

And then came the tablecloth.  It was one of the last things to clean up...a cheap, plastic, flag looking tablecloth that we've used for a couple of years now to cover one table or another for this party.  On this day, it was covered in crumbs and candy sprinkles.  Instead of wiping it down so it could be folded up and used next year, I began to fold it around the mess so it could all be thrown away at once.  "We won't need this again," I thought.

And that was my undoing.  

I don't know if I thought the tears just weren't there yet or if I thought I could  hold them off until August, but what I do know is that I didn't expect them this week, and I certainly didn't expect the crumpling of a cheap tablecloth to be the catalyst that brought them.  While I am blessed beyond measure to already have my next nanny job secured, and to know that it is a position I will love just as much as this one, it doesn't change the fact that I'm dreading having to say goodbye on our last full day together in August.  In fact, I think the only thing that keeps me sane about leaving is knowing how much I'm going to love and enjoy being nanny to the next family.


I let the tears fall and, when they were done, I wrapped up the sadness and put it in the trash with the tablecloth.

I suspect there may be many more unexpected moments this summer where some small random act throws reality into my face and calls up the tears that I don't want to shed.  But, as much as I can, I'm going to wrap myself and these three precocious, funny, compassionate, imaginative, wonderful little people into a protective bubble of summer fun and fill it with as many loved traditions and sparkling memories as possible.

They deserve that, and so do I.

Bittersweet

I don't like dark chocolate. It's bittersweet...like it cannot make a decision about being sweet and delicious or bitter and startling. It's frustrating. Something bittersweet cannot be sweet.

This Christmas, I find that my heart is in a bitter, bittersweet place. I cannot seem to find a comfortable place between the bitter and the sweet. I bounce unpredictably between the two with no clear place to land.

We found out a week ago that our local district is moving from half-day kindergarten as the standard to full day kindergarten as the standard. This means that, come fall, the Twincesses will join their brother at school all day long...leaving my employers with no need for a full time nanny. We are all sad at the prospect. We knew the day was coming, we just didn't know we'd be forced to it. Without much warning, this Christmas has become our last Christmas together.

There is sweetness to it, to be sure. Watching the children delight in the season certainly brightens the gloomiest of days. This year they've taken to heart the idea that giving is as much fun as receiving. They are forever making cards for people they love and taking into consideration what those people would like to see on a card. Their heartfelt efforts and capacity to love so freely is humbling, awe inspiring even.

I watch them respond to the impulses of their hearts and I am overcome with pride in their sweetness...and as quickly as that swells up in my heart, I am equally overcome with sadness that, in a matter of months, I will no longer be with them to witness their compassion and generosity.

I wrapped their gifts and I was torn between tears and excitement, thinking of how excited they are going to be with their bounty (and bounty it is...it took two full rolls of wrapping paper to wrap everything up!). I know that next year, I'll be wrapping gifts for different children. After 5 Christmases of wrapping gifts for my trio, that's going to be a tough adjustment.

Bittersweet.

It isn't just at work that my holiday is bittersweet this year.

Overshadowing everything is a grief that is still raw, ever present, and...at times...crippling. Just when I think it is easing, it sneaks up on me and leaves me grasping for breath.

There is one more child I want to be buying gifts for. I want his parents to be able to bring him to see Santa and whisper into Santa's ear what he really wants this year. I want his family to be wrapping his gifts, anticipating his excitement. I want them to sit at their holiday table and not have an empty chair. I want them to be able to light off Christmas Eve fireworks in their yard, not at their little boy's grave.

I want all of us who loved Ryan to not have this aching, gaping hole in our hearts.

Every Christmas, my favorite cards are the ones with pictures. I especially treasure the photos of children I've previously nannied...to still see them growing and becoming. I save them all. I come home every day eager to open the mail and to pull sweet smiling faces from the envelopes.

There's one I'll never get again, and every time I open an envelope my excitement battles the grief.


In all the sadness, I am deeply angry. I don't know where to direct that anger. No person did anything wrong. I'd be angry with God (if I'm completely honest, my heart is so) but my head knows that God is not the author of death...He does not cause our suffering or want us to be traumatized. He simply holds us through it, even if I can't feel one whit of that right now.

Sadness + anger = bitter, doesn't it?

There isn't much sweet about that.

I know that in time I will find that place of balance, a place where the grief isn't so blinding and where I can give the sweetness of my experiences the full focus. I will find a place where the bitter doesn't distort the sweetness, but makes the sweetness all that more sweet and precious.

I just wish I had a map of how to get there.

Blackest Friday

Two weeks.

Two weeks to the insanity and deals and craziness of Black Friday. It's never been my thing, to get up at the crack of dawn so I can score great deals on this or that item. Let's face it, it has never been my thing to wake up early, period.

This year, Black Friday is a little blacker than normal.

This year, Black Friday also happens to fall on Ryan's 8th birthday. Or, rather, what is supposed to be his 8th birthday.

It is still his birthday even if he is no longer alive to celebrate, right?

It is three months and one day since his mother called me, asked me if I was somewhere safe ("You're not driving, are you?"), and broke the news that Ryan was gone. My head and my heart have yet to grasp this. How does a little boy die? How does he suffer so excruciatingly much and not get to live as a reward?

How does time keep marching on, without him here?

We don't get to throw him a party this year. We don't get to sing and snap pictures as he blows out eight candles. There won't be any gift wrap detritus to clean up while he explores new toys and presents.

Instead, we can leave balloons and flowers at a snowy gravesite and pray that somewhere, that sweet, brave little boy knows we remember him on his day.

Will you help us remember him? Will you help us to celebrate in some small way?

Friday, November 25. Ryan's Birthday. Do Something Nice for a Child Day.

Anything nice. Big, small, secret, public, for a child you know or a child who is unknown to you. Just do something nice, that you might not otherwise do that day.

Maybe while you are out shopping for deals you buy an extra toy to donate to Toys for Tots. Maybe you drop some children's books or children's mittens at a shelter. Maybe, when your own child does that one annoying thing for the millionth time (leave the lights on? forget to clear their place at the table? forget to flush?) instead of calling them back and nagging them to take care of it, you simply take care of it yourself and take a moment to be grateful for the fact that your child is still here to make those messes. Maybe you let your kids have ice cream for dinner, or stay up late, or make them their favorite breakfast in bed. Maybe it is something else, entirely.

Just something nice...just because they are still here, because you still can.

I promise you, when all is said and done, you will not regret one single loving act or word or moment that you shared with another person. You'll just wish you'd had more chances to share.

Nannies need other nannies

In deference to this week being National Nanny Recognition Week, I would like to take this opportunity to recognize the nanny community for the support they have given to me over the past year. I hope that my non-nanny family and friends will not take offense. This recognition does not, in any way, mean to negate or diminish the extraordinary ways in which you continue to show me your love and support, nor the ways in which you allowed Ryan and his family into your hearts. It is all of you, together, who make me better than I am and there will never be enough words or ways with which to adequately thank you.

A wise nanny often tells me, "Only a nanny knows another nanny's heart."

She's right.

Our jobs are unique...we work in someone else's home, usually without coworkers or supervision. We are entrusted with the care and safety of someone else's children, a task that cannot under any circumstances be taken lightly. We are asked to give our hearts fully and completely...then to pack it up at the end of the day, take our heart home with us, and bring it back tomorrow. We are both employee and part of the family...a part of the family who can, at any time, be cut out forever at the whim of a jealous parent.

I have a lot of friends who have bosses...but they don't fold their bosses underwear or help them navigate a difficult in-law. I have a lot of friends who raise children...but they are the parent, and they get to make the final decisions about what is right, what is wrong, what is important. A nanny navigates her professional role in ways that other professionals are usually not called upon to do. It is my nanny friends who do these things, like I do, and who thus understand the intricacies and intimacies of my work...because it is their work, too.

It is no wonder, then, that when I'm having issues in my job or dealing with nanny related things that I turn first to my nanny friends for advice, for support, and sometimes for a good kick in the pants back to reality. The internet has broadened my nanny support base from just a few local nannies I happened to find in real life to an international network of smart, compassionate, dedicated professionals who are always willing to share the wealth of their knowledge and experience.

And, as I have discovered over the past year especially, they are willing to share their hearts.

It was less than 13 months ago when I turned to my nanny friends for support when a former charge of mine was admitted to the hospital with painful, mysterious symptoms and then later diagnosed with an aggressive beast of a cancer. I wanted to be able to BE a support for Ryan and his family, but I couldn't do that without also receiving support. I needed a place where I could weep and wail and vent...a place away from Ryan's family because the very last thing I wanted was for his parents to feel like they needed to support me. They needed to support their son and each other. I needed people who understood what it means to be the nanny...a person who loves a child wholly, completely, without condition, and without being the parent. A nanny's love does not compare to nor compete with a parent's love, but it is still a vibrant, powerful, freely given love strong enough that every nanny I know would unhesitatingly lay down her life for her charges.

The first nanny friends I turned to were my real life friends, April Krause and Maria Harrington. Their response was instant. "We'll do a fundraiser for them." In just a few minutes, they had the whole framework for a fundraiser planned. Over the next several months the two of them dove into planning. They coordinated a team of volunteers...other nannies, teachers and parents from Ryan's school...and planned a spectacular fundraiser that netted thousands of dollars to help the Millers pay expenses. Nannies from all over the country found ways to participate, and I know that I don't have the full list of those who did. They sent monetary donations as well as items for the raffle. Kristin Grau, Beth Taylor, Petra Ortiz, and Ruth Bernero all showed up the day of the event to lend their hands and help things run smoothly. I got a lot of the credit that day, and it was entirely undeserved. The idea wasn't mine. The planning was hardly my doing. The credit belonged to a lot of people...to everyone who helped out...but mostly to April and Maria.

As Ryan's journey continued on, I leaned heavily on a group of nannies I've never met in person. I've met a couple, but most of them are known to me by their email addresses through an email group, Worldwide Nannies. In the early days I worried that my frequent mention of Ryan would grow old and irritating. I was immediately and strongly reassured by the group that this would not be the case, that they were happy to be the place I came with my worries, fears, tears, and joys about Ryan's progress. They reassured me, they told me it was okay to cry and that crying didn't mean I was weak or failing the family. They cried with me for him, they prayed with me for him, they cheered with me for him. And, because they did, I was able to be there for Ryan and his family. I could not have shown up for the Millers if I did not have people who showed up for me, even if the only way they could show up was through the internet.

Ryan was declared cancer free on St. Patrick's Day. It was on that day, when I shared that wonderful news with my friends, family, and nanny community, that I realized how truly and wonderfully generous they had been in their support. They weren't just supporting me, they had chosen to care for and even love Ryan. And, because they had chosen to risk their hearts on a child they had never met, their hearts broke with mine...not for mine, but with mine...when Ryan's cancer returned in May.

Word spread through the online nanny community. The support came not only for me, but directly to Ryan and his parents. For that, I am forever grateful. As much as I needed support, they needed it more. Nannies from around the US...and even beyond...sent cards and letters for Ryan and his parents. They had their charges make cards and draw pictures. Charlotte Hilliker, a nanny who made a special place in her heart for Ryan, raised hundreds of dollars in just a week or two and used the money to by Ryan an iPad...something to keep him entertained and busy while he was stuck in bed, paralyzed by a tumor in his spinal cord. She got donations from her own family and friends...as well as from the nanny community at large. People in the industry that I'd never even heard of were posting her request on facebook and on their own websites. They didn't know me. They didn't know Ryan. But they knew that someone in their community loved a child who was desperately ill, and so they stepped up to help.


When Kristen, Ryan's mom, called me on the morning of August 10 to tell me that Ryan had died just a few hours earlier, my first instinct was to call another nanny. I got ahold of Maria and choked out the news to her...and then asked her to do what I could not: to call our other nanny friends and let them know. I don't know how she did it, because she was crying as hard as I was, but she did.

There's a lot of the week or so following Ryan's death that is just a haze to me. Constant tears blur both eyesight and memory, and a shattered heart does little to retain events. Here is what I remember vividly: Going to my mailbox, day after day, for weeks, and finding cards from other nannies, many of whom I've never met and have never really interacted with; likewise, going to the post office box I'd set up for the family and finding cards for Ryan's parents. As broken and grief stricken as I was, I was able to take each step forward...each breath...because of the incredible network of support that reached itself out to me to hold me up. While much of that came from my non-nanny friends and family, I cannot discount the enormous wave of love and shared grieving that came from the nanny community. It is what held me up.

My real life nanny friends, too, were there. They showed up, en masse, to the funeral home, each bearing a cold Diet Coke (they know me well!). They grieved, too, because they had let this extraordinary little boy into their own hearts. During the sharing of memories, April...who usually is loathe to speak in public...got up and shared her own memory of Ryan and how much he'd impacted her life.

Several of those same nannies took the next day off work in order to attend Ryan's celebration of life service. I didn't want to get out of bed that day. I didn't want to have to say goodbye. I knew I had to, though. Ryan's parents had asked me to sing at the service and we had chosen a song that I sang to Ryan all the time during his infancy. If nothing else, I had to show up and do this one thing. I flipped on my laptop and there, on facebook, was the most unexpected outpouring of support. It had started the day prior, but it had grown into epic proportions. I'm not sure exactly who started it, if it was April Krause or Glenda Propst. My profile picture, for months, has been a photo of Ryan and me together, taken last April when he was healthy. Nearly every nanny I knew...and dozens I did not know...had borrowed that photo and made it their own for the day, noting that it was a show of support so that I would know I wasn't alone on this horrible, terrible, wretched day. It was enough to help me get out of bed, get dressed, and go to the church. It was so much more than that.

In order to sing, you have to be able to breathe deeply and well. I hadn't felt like I'd taken a full breath since that phone call from Kristen. I didn't know how I was going to sing, how I was going to not fall apart and just cry through the music. Taking the advice of a friend, when I got up there I simply shut my eyes. As I did so, the last thing I caught sight of was the row of my nanny friends. When I closed them, what I saw was the rows and rows of changed profile pictures from facebook...all that same shot of a beautiful bald boy being held by his former nanny. Somehow, that was all it took. I knew how loved and supported I was and, more, I knew how much Ryan had been cared about by so many people who would never get to meet him. I knew how much he had mattered beyond his family and friends, how much his life had made a difference in the world.

In the end, what has meant the most to me is exactly that: the love and support that so many of you gave to Ryan and his family. While your advice, prayers, encouragement, and reality checks make it possible for me to be one of many, many, many people supporting and loving the Millers, the fact that you opened your hearts to them directly is what has been the most inspiring and enormous gift.

At the funeral home, one of the mothers in the community said to me that my love for Ryan had not gone unnoticed. As she embraced me she said "You loved him with a mother's heart." What I was too choked up to say in reply is that really, I loved him with a NANNY'S heart.

And so did my nanny friends.

For that, I am forever deeply in their debt.

At a Loss

Ryan's gone.

Those aren't words I ever thought I would have to write.

The depth of this grief isn't something I ever imagined possible. I've read before about arms that ache for a lost loved one but it wasn't until now that I understood this truth: the ache is real. It isn't just a sentimental turn of phrase. It is a real and physical ache that I can feel deep in the bones of my arms.

In the midst of my own tears, my own questions, my own angers, my own deep desire to stay in bed until Christmas, I am left trying to help three small children understand and cope with the loss of a boy they considered to be their friend.

They loved him, too.

They didn't get much time to prepare for this. None of us did. But I had no sooner explained to them that Ryan was moving into hospice care and what they meant when Ryan's mother called me to tell me that he was gone.

There have been a lot of questions. The girls are 4 1/2. Their brother is 6. They are trying to understand what it means to live and what it means to die. I know a lot of adults trying to still figure that out.

We've talked about Ryan's soul...that this is the part of Ryan only God can create, that no matter what Ryan's body looked like or how it changed that his soul is what made him Ryan, his soul is what gave that body life. It challenges them that, like the wind, we cannot see a soul but only see and feel its effects.

After many questions about what a soul is and where Ryan's soul is now, it finally occurred to the Little Litigator to ask about Ryan's body. I had been dreading these questions, but I also was prepared. Ryan's parents included me in family-only events after he passed. I saw him in his casket before it was closed for the public visitation at the funeral home. I saw it lowered at the cemetery and covered with earth.

So when the questions came I was able to answer them. "What is he wearing?" His karate gi from "Kids Kicking Cancer", the Nike's that he custom designed online with his grandmother...they are bright red and yellow and have green stitching that reads "Ry Rocks". "Is he alone?" No, he has Banks (his blankie) and his two stuffed dogs with him. "What else does he have?" Oh, lots of things that he loved...like a baseball, his fishing pole and flies, his favorite book from when he was little, a hat from his school with his award on it... "So his special stuff, right?" Exactly.

Then came the questions about how burial happened. I explained how everything was done to keep Ryan's body safe because we already know Ryan's soul is safe in heaven, that the casket keeps him with his special stuff and keeps him dry and clean and safe. It's hard to explain burying a child, to a child.

"What's a cemetery look like?" Well, it kind of looks like a really big yard or park without a playground. "Can we go there? Maybe have a picnic?"

Well. *That* wasn't a question I expected.

I realize there are those who will think I was crazy to even consider the idea: A picnic, at a cemetery, with children. I apologize if the very thought of it offends you, but all I could think about was the little boy in front of me, grieving his friend, and telling me what he needed to try and cope with this ridiculously unfair loss. He needed to see where his friend's body was, he needed to say goodbye. The only other people whose opinions I cared about were Ryan's parents...and they thought the idea was wonderful.

And so, last week, I found myself packing a picnic lunch, bubbles, and water pistols for a day at the cemetery.

Shortly before we left, Little Litigator asked if he could change clothes. I told him he could, and he came back down in his church clothes. Please understand...usually, he fights and screams and protests at having to put on his church clothes. Yet, there he was, shyly proud in his khaki's and button down shirt.

He's 6. He doesn't necessarily know how to identify and verbalize "This day is a very big deal to me. It is an important day." Instead, he said such by putting on the clothes he knows he wears for important things, even though he prefers a sports jersey.

I feared, in that moment, that this might be too much for him.

Ryan's grave is not yet overgrown with grass. The headstone is not there yet, either. The large patch of dirt is what tells us "Someone much loved has been laid to rest here."

Little Litigator approached slowly, not at his usual run. His sisters danced and twirled around.

He stood, silently. "Ryan's under there?" I nodded, and reminded him that it was Ryan's body below, his soul in heaven. "Can we dig to see him?" No, honey, we aren't allowed to do that. He lay down in the grass then, alongside his friend, and whispered what he needed to say.

After we ate, he told his sisters that they needed to pray with Ryan. They sat, curled into each other, at the edge of the grass graveside. (see photo above) I stayed back and gave them their private time together.

Then, they remembered the water pistols. It probably isn't often that the solemn silence of a cemetery is shattered with shouts of laughter. That might be offensive to some, too, but it seemed appropriate to honor the life of a child with children dancing and playing and erupting into giggles.

When it was time to go, we stood together to say goodbye.

"I wuv you, Wyan. I hope you are havin' fun pwayin' wif Jesus and I'm gwad your body doesn't hurt anymore" (Twincess A)

"I miss you Ryan. I feel so sad and I love you." (Twincess E)

Little Litigator was quiet. Then he did something unexpected and extraordinarily, heartachingly sweet. "I want to kiss my friend," he said. Then he dropped to the ground and kissed the dirt that covers Ryan. This little boy who, over the past many months, has started to restrain his affection towards his male friends because "love is for girls", let go of the restraint he has somehow learned from the world and unabashedly poured out his affection for his friend. Over and over. His sisters enthusiastically followed suit.

It wasn't far off from what I had wanted to do myself just 6 days earlier...to lay down on that dirt and never leave. Children seem to have a way of expressing that which adults are often afraid to let loose.

It was a quiet ride home. Peaceful, but quiet.

I don't know how to ease their grief. I can hardly bear my own grief. I do not have satisfactory answers to everything they ask. I can't promise them much, other than that I will allow them to keep asking questions and to keep mourning and healing in whatever ways they need. I will hold them in my aching arms when they need to be held and I will give them their space when they need some time alone with the emotions they are struggling to process.

That's all I know to do for them and, for now, it will have to be enough.

Fixing

I'm a fixer by nature.

I am certain that we could examine my life and come up with all sorts of psychological reasons that I am so compulsively compelled to nurture, caretake, and solve problems but the end result is still the same: I'm a fixer. I like the work of it, having something to do that is of service and purpose. I don't need the credit, just the opportunity.

That sounds wrong...I'd be happy if there were no need (thus, no opportunity) for fixing in this world. But, let's face it: We live in a world replete with wounds...visible and not...and so, while those wounds exist, I will fix.

A very wise and trusted advisor has invested a good bit of energy and effort over the past several years to help me see that I cannot fix the entire world, that I have the right to fix myself, and that I even have the responsibility to sometimes say no to demands on my time and energies. For the most part, I've learned to be more judicious with my efforts...to take the time to nurture myself and to not feel guilty about that.

Sometimes, though, there are situations which threaten to undo much of that growth. Situations which take my heart, rip it to shreds, and leave me consumed with the need to make it all better. Situations which leave me internally wailing and screaming with frustration because no matter what I do there is nothing I can actually do to fix it.

There is nothing more frustrating to a fixer than to be completely helpless to a situation, to be entirely unable to fix a thing about it but to want nothing more than to make it all better, to be able to wave a wand (or find the words or create a solution) and make the wounds or pain in front of us disappear.

There have been a few situations like this in my life. When I was told that my marrow recipient was, indeed, terminally ill I shattered inside and wished with all my being that I could trade places with her to spare her family the agony of losing their beloved wife, mother, daughter, and sister. I wished that for years, long after she was gone. Even still, sometimes. When I first met my godson in Honduras...a 4 year old who weighed 13 lbs 8 oz because there hadn't been enough food to feed him so that he could grow. Holding his starved, fragile, weak, deprived little body I felt smaller than I knew was possible. I could be part of the team that loved and fed this one child...but what of the millions more I could never help? Irrationally, it felt like a personal failure. I would watch this breathtakingly emaciated child begin to grow again, to smile again, and when my heart would leap with joy at his progress it would also sob in frustration at all the children who would never get what he got: A home. Food. Love.

Most recently, the situation that leaves me broken and without any answers is one that has left many others in the same dizzying spinning place as myself.

Ryan has cancer, again.

He's only 7 and he has been in the hospital since May 10...more than 9 weeks now and almost all of that in the PICU.

If you've ever loved someone going through treatment for cancer, you know that cancer is terrible awful wretched heartbreaking a mother fucking bitch. (warning to parents: this blog may contain inappropriate language.)

There's nothing I can do to fix this. I cannot take the beast away. I cannot offer his parents several different solution scenarios to try out, the way I usually can for parents struggling with a parenting dilemma because cancer is way beyond "parenting dilemma". I cannot take away his tumors, one of which has taken up residence inside his spinal cord and left him unable to feel or move from the midchest down. I cannot take away the unending pain he is in...but if there were a way for me to feel it so he didn't have to, I would. I don't say that out of altruism, I say that because, quite selfishly, it would be easier to feel his pain myself than it is to watch him feel it, easier to be in pain myself than to be helpless in the face of his agony. When he vomits from chemo and radiation, I can hold a basin and wipe his face and cradle his head and murmur soothing words...but I can't stop his suffering. I can't share it. I can't even ease it. More often than not, just as I am about to truly break it is Ryan who fixes it...an impish grin, a giggle, a joke...his ability to mentally and emotionally rally around and just be a boy reminds me to focus on the small successes, on the sparkle that exists in every darkness.

I don't know how his parents stand it, every day. They are two of the strongest people I know simply for the fact that they are still coherent and upright. I don't know how they do it. I'd do anything so that they didn't have to, so that they had their laughing running dancing boy back, healthy and strong. They suffer with their son, and there is nothing that can be done about that, either.

This past week what I could not fix was a massive, raging, infection that has ravaged Ryan's defenseless system. Chemo has left him without much of an immune system and the infection ran rampant, wreaking havoc on his already embattled little body. With his blood pressure and temperature skyrocketing, the decision was made to sedate him and put him on a ventilator so that his energy can go entirely to fighting the infection.

Seeing a child you love on a ventilator is a sucker punch that will knock you to your knees.

When Ryan's mom texted me to tell me about this new development I asked her what I could do because I was at a loss. I needed to fix it for them, but knew I could not. She told me that what she needed from me was my prayers..."massive prayers."

Have you ever come up with an idea that you know didn't come from you? My faith based friends know what I am talking about, my non faith based friends just think this sort of thing has a diagnosis behind it.

Sometimes, we are merely instruments of the Spirit.

See? You either know exactly what I mean or you think I need heavy medication.

I've been used by the Spirit before. Sometimes it has been an outpouring of advice and wisdom that just pours forth, without any actual conscious effort from me. Sometimes it is a sudden very clear plan for something. When it happens, I feel different. It is hard to explain...if you felt it, you'd know it for what it is. It is a quiet and joyful peace, a secure knowing. It comes from something far greater than self.

There is a Fixer who can fix what we cannot, and that Fixer often asks us to be His hands.

A clue for me that I am just an instrument, other than that peaceful knowing, is that my heart leaps eleventy twelve thousand miles ahead of my brain. I am led by impulse, not a thought out plan.

So it was when I found my fingers typing out event invites for a prayer gathering for Ryan to be held in the hospital chapel. Without actual thought I just knew the time, place, and people. I knew the people I invited would invite others. I sent out invites, sat back, and realized with complete panic that I had no idea what I was doing.

Faith and prayer are an integral part of who I am but I am not a prayer or worship leader. I have never been comfortable in that role or even been called to that role and so I've never filled that role. And now, here I was with an event in less than 24 hours and because my heart had leapt ahead of my brain.

As amazing grace would have it, I have many friends in ministry. They are gifted and generous and compassionate and kind. Two of them were also willing, at a moments notice, to plan and prepare a prayer service complete with music, readings, reflections, and prayers.

That's how it happens when we allow ourselves to be His hands. What could be a ridiculous disaster falls magically, perfectly, effortlessly together. We have to allow self to step back, get out of the way, and reach His hands out. Sometimes, when we want most to be the fixer we have to hand the fixing over to someone else, to something else.

Oh, how sweet the sound to hear 80+ voices raised in prayerful song in that tiny hospital chapel that we used without asking permission. Standing room only, every heart as desperate as my own to heal this one child. It is a safe bet that every person who showed up wants, as badly as I do, to fix this for Ryan and his family.

And because not one of us is a miracle worker, we joined together to ask God, the one miracle worker we know, to fix what we cannot. We raised our shouts to the Lord, who can heal our every ill, and knew we were joined by hearts from all over the globe in one prayer: Heal this child, and hold his parents up.

Maybe sometimes being a fixer means knowing you can't fix it and asking the one who can to take over.

Ryan is stable for now, still sedated, still on a vent, still trying to get rid of the infection.

I can't fix that.

But I know who can.