Four Years

Seven Junes ago,

we moved from the desert to the Pacific northwest. Julianna’s care was getting more and more complicated, so we moved to be closer to family. We left one hundred degree days for sixty degree ones, sand for evergreen, established jobs for uncertainty. 

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One of our first weekends in Washington.

I have moved twelve times since leaving home for college. Moves are always stressful, but when young children are in the mix, they are doubly, maybe triply so. And when one of them is medically fragile, the stress is exponential. 

We bought a house with wide halls,  because we knew there would be a  wheelchair in our future. We installed a power generator, because she depended on a machine to breathe at night. Her medical team was already in place, because I did the research months before. 

So many moving parts, because we had to keep Julianna healthy. I didn’t let myself think about the alternative, but it fueled everything I did with a sense of urgency bordering on desperation. I organized and executed because her life —  my heart —  depended on it. 

 

Six Junes ago,

we were in hell. The thing I didn’t let myself think about was happening: Julianna was dying. I couldn’t face it, but I knew it, deep in my bones and gut and soul. It would have been easier to die myself, but she needed me. 

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All of our hospital pictures were taken towards the end of her stays, when she was on the mend. You can see in her eyes, though, the toll it took.

Five Junes ago

was a lovely reprieve. Julianna was dying, but once acknowledged, we lived, with purpose and beauty. 

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Photo – Capturing Grace Photography

And the next June,

four years ago today, I held her in my arms and told her she could go. Run, jump and play, little one. Go to the place where things are what they were always meant to be. You are free.

 

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If having a child changes everything, losing one changes more.

Something fundamental shifts, and it cannot go back to the way it was before. Grief makes you an alien in your once familiar world. You see, hear and feel everything differently. How could it be that the sun still rises and sets, that gravity still grounds?  The seasons continue their relentless march, always onward, indifferent to my split reality. 

We’re not supposed to live with one foot in the grave, but is it more acceptable to have a part of your heart there?  Love isn’t safe, and she, with her soft pink cheeks and startling, sweet eyes, took a part of me with her. There’s no shame in it, just as there is no rising above or moving on from the death of your child. It just is. 

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Her first Christmas. Patch from her flight suit, one of her first Halloween costumes. 

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It’s June again,

and time for another move. We’re leaving our comfortable home with its wide halls and pale pink princess room and going back to the desert.  It’s a temporary move and much less complicated than the one seven years ago, but it’s been agonizing. It’s hard to leave her last home, the place where she was so happy. 

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We bought our home because it fit our Julianna needs. I thought that the view was just a bonus — but she needed it, absolutely. 

 

We’re moving so that I can do an HPM (Hospice Palliative Medicine) fellowship. I thought I finished my medical training twelve years ago when I graduated from  neurology residency. I didn’t know then that there would be a girl named Julianna, that she’d teach me  how to live — and how to die. I couldn’t have imagined surviving the death of my child, and I wouldn’t have believed anyone who told me that hospice would make her last months the happiest of my life. 

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photo – Capturing Grace Photography

 

It happened, though. It all happened, and it has produced and demands change. The second half of my medical career will be spent with families whose lives are upended by serious illness. I know the suffering that comes from fear, and I want to help them face it, in their own time and in their own way. I think it’s what I’m supposed to do. 

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Four years ago,

my world ended. I mourn it every day, and I take it with me, everywhere and always, for the rest of my life. 

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photo – Charles Gullung

 

 

Mother’s Day

Motherhood is joy, and it is pain.

Joy is easy, and it is polite. You can put it on a card and take it out to brunch.

Pain is hard, and it is ugly. You want to hide it away, but, like joy, it cannot be contained.

For the bereaved mother, there is no separation of the two. To ignore one is to deny the depth of the love you carry for the child you can no longer hold.

This Mother’s Day, I went deeper into the pain and wrote a piece for CMTRF. It wasn’t easy to write, so it may not be easy to read. It’s a part of my motherhood, though, and millions of others who know that love has a cost.

I would do it all over again, for the privilege of being her mother.

 

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Armor (and t-shirts)

I wasn’t a hermit, exactly, when Julianna was here, but I came close.

Work, grocery and toy acquisition took me out of the house almost every day, but the outside world felt distant, almost irrelevant. Everything real and important was contained within the walls of our home. We were cocooned in a soft, magical space where the wit matched the décor (sparkling). There were every-colored ponies, Julianna tigers and vaccines delivered with soft needles.

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photo by Charles Gullung

 

Cruelty existed only in the form of the disease that necessitated our cloister. It spun its web and counted down, but on every day except for her last, we were safe in our lovely cocoon. There was nowhere else I wanted to be.

When Julianna died, it – everything – was ripped open. The world hadn’t ended like I felt it ought, and I was in it again.

It was a shock. On the first airplane ride after she died, I heard a pair of passengers dismiss our flight attendant as “old” and “rough looking.” Apparently, it was funny.

“Really?” I thought. “Is this what it’s like out here?”

And I missed it even more, the world we had created, the one that followed the rules of a girl whose love flowed out of her heart, onto her shoulders and into the dozens of kisses she blew to me every day. How would I survive in this other world?

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The answers didn’t come all at once. I put a bright pink streak in my hair — because she marked me. I had a necklace made, a snowflake with a little pink diamond center, and asked for a chain strong enough to last the rest of my life. Hair dye and bespoke jewelry were my armor against a harsh, bewildering world. Unconventional, perhaps, but I knew she would approve.

 

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The jeweler added a surprise message on the back.

 

Finding a new life after monstrous loss has been a dance of stepping forward (to what?) and retreating, humbled and shattered. Compartmentalization can pass for courage, but it’s like treading water: it buys time but takes you nowhere. And you can’t do it forever.

Peace and purpose in a post-Julianna world have been hard-won, first coming in flashes, then in fleeting bits turned into stretches of time. I do best when I carry her with me and look for her everywhere. Yes, it keeps me closer to the pain, but I can’t have it both ways.

She’s gone – my God, she’s really gone…but she was glorious, and she was mine. How lucky was I?

Life outside the cocoon is still bewildering. She’s here, though. I just have to keep following her lead.

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At a very special wedding…

 

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and a talk.

 

One more thing….

 

T-shirts like these are another piece of my armor.

I hadn’t planned on doing another set of shirts, but people keep asking — even if they don’t know the story behind it, they respond to the message.

For the next week, you can get them at cost ($9 for adult or child’s short sleeve and $19 for adult long sleeve) — click here.

And if you are able, please donate to the CMT Research Foundation. 

Nine

Today she would have been nine. But what does that even mean?

I can imagine six – she almost got there, after all. And seven isn’t so different from six. But eight, now nine, next year ten. A decade! My mind can go there, easily, but my heart doesn’t allow it. It won’t be crushed for a fantasy, not when life already contains such abundant substrate for brokenness.

An older Julianna is not an option, so I think of the past. Babies are magic, and she, with her perfectly round head and gummy smile, was no exception.

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almost one here

She was not an easy baby, though. My strongest memory of her first few months is crying — mostly her, but me too as I rocked and paced, rocked and paced. Why wouldn’t she stop crying? It was colic, and I couldn’t wait until it was over.

She outgrew it, but then the real problems started: worry over missed milestones, a diagnosis, determination to beat stupid CMT. Then, abject fear when we realized  we would not.

Life was a serious of obstacles. Things would be OK if we could just get past them. When she starts walking; when we get the feeding tube in; when we get out of the hospital…it will be OK. 

Security based on supposition is not actually very secure at all. What if it doesn’t work out and life is most certainly not OK? You go to Plan B (then C, D, E and F) and get more desperate. If the cause is noble and you fight hard, it will work out, right? It has to work out.

This, as it turns out, is another supposition. The most earnest and pure longing of my heart, the desire to simply see her grow up, was not guaranteed. At some point, I stopped looking into the future; I couldn’t face it anymore.

Enter Julianna. If you spent any time with her at all, you knew she was special. If you managed to put away your phone and internal checklist and worry, you entered a world created by an agile mind and tremendous heart. And it changed you.

Her eyes said it all. They contained ancient wisdom and saw things that a child shouldn’t face, but reflected only peace and deepest love — and mischief.

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I wish I knew what she was thinking here. Photo by Aubrey LeGault

They told me that things would be OK in the end, the real end. If I had ever doubted it before, I couldn’t now because she made it too real.

But enough of all that, they said. Life is short for all of us, so you have to play and sing and laugh.

And move, as much as you can, because you can. For the joy of it.

It really will be OK in the end, but right now, live.

So on the day she would have been nine, I’ll look for something beautiful and do something fun. The past is not accessible, not in the way I really want, and the future seems too long without her. All I have is now.

She was happiest when I stayed there with her.

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