Monday, July 23, 2012

The "Beautiful Day" Brownies

I baked a batch of brownies that my BFF Wendy and I will bring with us today when we go to visit her daughter, Julia. We always buy a present for her, too, when we go to the Ann Arbor Art Fair each July, usually a sparkling blue gizmo of some sort; the color matches Julia's eyes, and what child (of any age!) wouldn't love a new toy or trinket? We'll bring that with us, along with the treats.

After work, Wendy and I will meet up and then spend the evening with Julia. We ask her questions, we tell her stories, we give her updates on how things have been. There is always some laughter, there are some serious moments, occasional tears ... the full range, as it should be among loved ones when they get together.

Wendy had told me she'd be "most honored" if I wrote about Julia, so let me tell you a bit about this very special girl.

Julia was born on December 27, 1997, a perfect 10-pound baby. Soon she started doing an unusual thing with her thumbs: she would fold them in, as though she were holding up four fingers, and if you tried to pry her thumb up it would snap right back into the preferred position. It seemed like a cute quirk.

Then Julia would cry seemingly endlessly, inconsolably. She was stiff, and she had difficulty eating. The pediatrician dismissed it as colic, as perhaps food intolerances, as something benign and insignificant, but Wendy knew better ... mothers always do. She searched and searched, until she found the answer to what might be happening to her child. She wanted an answer, even a frightening one; at least then she'd know what enemy she was fighting and could chart a plan of attack.

It turns out that Julia had Krabbe's [krah-BAYZ] Disease, a genetic disorder that destroys myelin - the protective covering of the nervous system - because of insufficient quantities of a simple enzyme. Krabbe's steals the ability to swallow, to see, to regulate internal temperature, to move; and it is excruciating. Julia's folding in of her thumbs was actually the very first notable, visible symptom.

That summer, Wendy took Julia down to Duke University for a cord blood transplant - the only known treatment for Krabbe's, and a terribly dangerous and risky one; it was still fairly experimental in 1998, and is most effective before a child develops symptoms. They spent months in isolation, away from Julia's father and Wendy's two older children, Alison and Cam, who all stayed here in Michigan. There was chemotherapy. There was a seemingly anticlimactic i.v. hooked up to provide potentially life-saving stem cells, which dripped into Julia's blood stream with such anticipation and so many prayers. There were complications, truly near-death emergencies. Julia spent her first Christmas and her first birthday in the hospital, unable to come home because her health was too precarious.

But then Julia and Wendy came home, sort of. They spent more months at The University of Michigan Health System, but at least they were back in Ann Arbor with family and friends for support. Julia started to stabilize, Wendy practically earned a medical degree as she learned how to care for her daughter, and then finally they were able to really go home ... with a ventilator, with tubes and wires and meds, with nursing care, and with hope.

There continued to be crises and problems, but the transplant seemed to have arrested the disease's damage. Julia was able to go on adventures to Alison's and to Cam's soccer games. She would go to school with Wendy, who was teaching in a Montessori program at the time. She went on road trips to visit family in New York. Sure, 100 pounds of medical gear and a specially-designed stroller came along too. But Julia was not denied any experience if there was a way for her to be a part of it.

Julia may have lost many of her abilities, but her hearing was still very keen. Wendy played music for her constantly, all varieties. And if a familiar person came in, Julia would immediately turn her head and say "hello" by moving her lips a bit and blowing kisses. Spiritual people, those who seem to have a far greater sense of other realms than Wendy and I do (we joke about being obtuse and clueless!), inevitably told of Julia's radiance, saying that she had progressed far beyond many other souls. She had both learned and taught lessons, and she had nearly completed her journey.

At the park with Wendy on a beautiful day - and while listening to U2's "Beautiful Day" - suddenly, unexpectedly, Julia died. At the funeral, Wendy noted that Julia had never uttered a word, never held a crayon, never taken one step; but she had survived when so many others with that hideous disease hadn't. She had fought for every moment. She had lived.

But it was time to move on.

Julia was 7-and-a-half ... please don't forget the half. Those halves are very important to children, and to mothers who no longer get to count years.

So Wendy and I will go to visit Julia tonight, as we do so often in the course of our lives, because today is the anniversary of her death - her yahrzeit [YAHRT-zite], in Hebrew. Other girlfriends drink Cosmos at happy hour, Wendy and I go to the cemetery to commune with Julia. She's our guardian angel, our intercessor, a source of comfort and wisdom even when we're too mired in the concerns of this world or consumed with our own daily needs to fully understand what she's trying to teach us, where she's trying to lead us. We visit because Julia is still with us, even if Wendy can't hold her or kiss her anymore.

I can't fix the errant DNA that causes the destruction of the nervous system in children with Krabbe's Disease. I can't take away the memories of Julia's treatments, life-sustaining machines, or pain. I can't bring back the smile that was lost when Julia was still a baby ... who could have known, when seeing it one day, that it would be the last one? I can't take away the sight, seared into my cherished friend's soul, of her little girl in a blue dress lying in a casket.

But when Julia died, I asked what I could do ... what could anyone possibly do??? Wendy asked me to bake brownies; she intended to eat the entire batch herself, knowing full well that it wouldn't bring comfort but still seeking comfort where she could. I obliged. It was all I could do.

And so, I do it every year now.  The brownies are an integral part of our tradition.

Whatever shiny, sparkly toy that Wendy and I have found at the art fair will be hung on the shepherd's hook that stands over Julia's grave, which holds a wide variety of mementos. Others might think it's a tad morbid to seek solace at a child's resting place and to decorate it festively, but this is a place of peace and beauty and, surprisingly, of comfort.

Julia never tasted a brownie, as it would have posed a choking hazard or been aspirated. So when we visit her today, Wendy and I will eat her share for her ... we're helpful that way. And we will inevitably go home inspired - an odd reaction to contemplate if you haven't experienced it, I know.

But Wendy and I always benefit from visiting with Julia. Her "heart is a bloom" which "shoots up through the stony ground" ... the perfect description, which U2 sang to Julia on her last beautiful day.


Jenn said...

What a heartbreaking, yet so inspiring and touching story. Thank you so much for sharing Julia's life with us. xo

Cranberry Morning said...

What a heartbreaking post, and yet so sweet that you two (no pun intended) celebrate Julia's life with your own special tradition. The loss of a child is always there in a mother's heart, and it must be such a comfort to Wendy that you are with her each year to remember Julia in this way. I love the photo of Julia with the angel wings. :-)

Bibi @ Bibi's Culinary Journey said...

What a heartbreaking story, Mary. My heart is crying for Wendy. I love your tradition. Julia was born the same year my oldest boy and I can't imagine my life without him. Please, give Wendy a big hug from me & tell her I am thinking of her & Julia :)

Karen Mortensen said...

What a beautiful and heart warming story. What a special day for the two of you.

Carla said...

Thank you for sharing this special personal story. Bless You!

Nicole said...

WOW. My turn to be speechless.
It is a beautiful day.

carolynla99 said...

What a beautiful blog, Mary. That little girl has a permanent place in my heart, as does her mom. I had the pleasure of being one of Julia's nurses for 3 1/2 yrs, a very life changing experience. I was missing her and feeling s ad and when I read your post, it made me feel happy that you and Wendy celebrate in this way! I'll always think of her whenever I eat a brownie now! Thanks for posting this.

Ellen Barth said...

What a beautiful tribute to Julia.

Anonymous said...

Beautiful day, beautiful Julia. Only when you lose a child, do you realize the importance of memory and traditions - sometimes it's the smallest of things. May Julia's memory always be a blessing. - JH

WlZ said...

Julia taught me more than I ever wanted to know about medicine, and more than I ever could have imagined about the value of love and life, never easy, but always worthwhile. Beautiful days make a beautiful life, of which food and friendship comprise some of the best moments. Mary, you give me the most treasured of all of the above!

Candace said...

So so touched by this post, Mary. Thank you for sharing this with us.

Hillary Miller said...

My heart is broken when I read this post. Believe that Wendy is a tough woman and they'll go through this difficult situation.

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