One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Monday, January 16, 2006


Annika will be leaving the PICU soon. We heard those words first from one of the transplant surgeons here, "So," he asked Sunday morning, "what is keeping Annika here in The Unit?" ("The Unit", aka Pediatric Intensive Care Unit). The more cautious of the doctors listed a few reasons to watch her closely, but mainly the question was met with smiles exchanged among the 8 doctors gathered outside her room. And as we were readying ourselves to take our leave of this place, our long-time neighbor and PICU buddy, Matthew, was taking his leave, as well. But his departure was met with tears and that infinite sadness, almost too much to contemplate. It's that moment when you suddenly lose sight of your child in a crowd and your heart implodes at the same time that your entire body tingles with the feeling of loss, like a part of you that you absolutely cannot live without has suddenly disappeared. But then you twirl around, standing on your tiptoes for a better view, and you catch a glimpse of a familiar red jacket. And a few seconds later, with your child back beside you, you let out your breath and feel the dizziness in your head subside. I try to imagine that feeling going on for hours, days, months, years, and wonder how our gentle and lovely friends will be able to keep moving. To go back to a life without their precious one, the boy they fought for and cared for and loved so fiercely not just these past few hard months, but every day of his four years with them.
A little over a month ago, after Annika had another bleed after the shunt surgery, back when she was clearly getting sicker by the day, she started showing signs of growing anxiety. We decided to insist that all medical talk be done outside her room, in order to avoid scaring her unnecessarily. But I always asked her, every day, if she had any questions about what was going on with her and her liver and all the hospital stuff. After all, I didn't want to keep Anni in the dark, but I wanted to be sure that the facts were given to her in a way that a 5-year-old mind could grasp. On that day, a little over a month ago, when I asked her if she had any questions for me, she nodded her head and gave me an earnest look, "Am I going to die?" The question, naturally, took me by surprise, even though I had been worrying about that very issue myself. Without even stopping to think about how best to formulate an answer, I blurted, "No! Of course not! You are not going to die for a very long time. You are sick now, but the doctors are going to make you better very soon and then we'll go home again." I didn't say "The End," but it was there, anyway. We called in the Child Life Specialist to give us ideas on easing Annika's anxiety and her growing unhappiness. I told her about Anni's question, and she replied a bit skeptically, "But does she really know what death means?" And I had to admit that I couldn't be sure she did. But the concept has certainly concerned her for many months now, ever since Aunt Pat's death, which she mourned in her confused way for weeks. For much of that time, her mourning was that of a child, typically and innocently self-centered. So, for instance, she mourned the fact that Aunt Pat, a famously gifted storyteller, would never be able to share her stories with Anni. And she cried over all the Aunt Pat singing and telephone calls and visits that would now never be a part of Anni's life. Just the week before Annika began the repeated bleeding that landed her in the PICU mid-November, and a few months after Aunt Pat's death, the girls and I were out in the front yard planting a new maple tree. It was fairly late for planting in the midwest, but I was encouraged by the unseasonably warm fall weather into purchasing the little tree at a bargain basement price, and hoping for the best. The girls, each with a plastic sandbox shovel, helped me dig a hole, loading the dirt into the wheelbarrow to use as backfill. Once we had the tree in the ground, we began refilling the hole until it was time to water gently to remove any air pockets. Anni enthusiastically volunteered to go fill the water bucket from the hose, proud of her ability to turn the outside faucet on and off. She hurried off while I stayed by the tree with Frankie, trying my best to curb Frankie's apparently irrestible impulse to jump into the hole with the little tree and fondle its delicate roots. Just a bit later, Annika ran back to me with her mouth pulled down unhappily and her eyes all shiny with tears. "What is it?" I asked, concerned. "It's a bird. And I think it might be dead. Or something." She pulled my hand to lead me over by the wild rose bush that grows in front of the house, near the spigot attached to the front of the house. Sure enough, there was one bird from the mourning dove pair with a nest near our house, the ones who spent the early morning hours of the summer cooing softly outside our windows. It lay there, right beside the brick front of our house, obviously dead. After ascertaining that Annika had not touched the bird (fear of disease rules our lives, I admit), I asked her to take Frankie to the backyard while I took care of the bird. Then Annika started to cry. "But now he won't get to fly around, or eat any more bird seed!" And just like that her sorrow shifted outside herself, as she realized that death also meant that the one who was gone would miss out on life, that sadness was not just about what Annika would miss. So, although I still wasn't sure that Annika really knew what "death" meant, I also knew that the same could be said of me. I did know that she grasped the consequences of death in heartbreaking simplicity.
Matthew had had so many close calls here at the hospital, and he pulled off amazing feats of strength and resilience. Even as the list of medical problems assaulting his little body grew in number and severity, there was still the feeling that he could pull it off. Somehow. And, yet, eventually your rational mind knows that there are only so many assaults a body can take, no matter how strong the spirit and will. When I left Annika's room that morning for a cup of water, I saw the privacy divider up outside Matthew's room, and the crash cart parked outside his door. I knew then that Matthew was approaching that border, even before I saw the strained and exhausted face of his father in the hallway. If love and devotion were enough, Matthew would be home playing with his baby sister by this time. His parents, Brad and Angela, kept a constant vigil at his bedside, reading him stories and massaging his legs, even after he was on the ventilator and fully sedated. Even as he lay unconscious, they spoke and read and comforted him. Their strength, kindness, and compassion held firm throughout their roughest times and deepest worries. Just after Matthew's latest complication, I walked with Angela to the PICU waiting room, where her 2-year-old daughter, Lauren, was waiting for her, a meeting arranged back when Matthew was looking more stable, a meeting now so much more difficult because of Matthew's troubles. But despite the weight of awful worry practically pushing her shoulders down as she walked out of the PICU and into the waiting room, she opened her arms to Lauren unreservedly and closed her eyes into the embrace. Her mommy instincts undulled by the harrowing experience of the morning, she praised Lauren's bravery, giving her a love unshadowed by the fear we all knew she held. I know that Brad and Angela will make it through this, and they will be back to Mommy and Daddy for Lauren, whose inevitable questions may be more difficult than any others. I know this, somehow. Although my heart aches with the thought of the days ahead, always missing Matthew and trying not to let their sadness weigh down the happy leaps Lauren still needs to make. I don't know how they will do it, but my respect for them tells me they will. After Brad and Angela left the hospital today, arms empty and eyes red, I walked down the hall to the toilet. Passing their room, I saw the privacy divider had been taken down and the crash cart returned to its proper place. No codes were called for Matthew's last moments. He went wrapped in his parents' arms, quietly. I'm glad we're leaving this place, now that Matthew's gone. Passing his room and seeing his bed, empty; it's heartbreaking. But the sight of someone else's child in that room, another parent keeping vigil, would be unbearable.
Of all the conversations I had with Angela over these past weeks, the most poignant one was the morning after Matthew had to be reintubated. He had spent a week off the ventilator, and hopes were high until the night before, when he coded and was put back on the vent. That morning, Angela told me with red-rimmed eyes about her fears, and how she had waited all that week to see him open his eyes and to hear him speak. "I was all ready to write down his first words off the ventilator," she told me. "I had my journal all ready. I didn't write down his first words when he was just a baby. I didn't write those words in a baby book, but I was so ready to record his first words this time... But he just didn't speak." That conversation was about so much more than just first words. It was about the regret of opportunities missed, a regret that haunts all of us PICU parents. For myself, I regretted spending my one precious day back home from the hospital between Anni's bleeds decorating the girls' room upstairs, all by myself, in a misguided attempt to do something special for the girls. I should have been playing with them, and hugging them, in that time that I didn't know was to end so quickly. Because who cares about paint? There's this country song (isn't there always a country song relevant to any sad conversation?) sung by, I believe, Tim McGraw. It's called something like, "Live Like You Were Dying." The song endorses a message that sounds reasonable enough: don't sweat the small stuff, and enjoy every moment of life. And I know that every parent can list things they would have done differently, if they were to be told that their time with their children would be short. But, on the other hand, this song also pisses me off a bit. I mean, think about it. If we were to really take this song to heart, where would we end up? We would all head off to a beach somewhere to chill out and feel the sun on our faces and listen to the waves and just enjoy the moment, right? Then, a few weeks later, we would all look around at each other with our sunburned faces (because who wants to be bothered with sunscreen if you're living like you're dying?) and wonder where we were going to come up with food (because who feels like harvesting corn if you're living like you're dying) and head back to our dark homes (because who feels like showing up to work at the power plant if you're living like you're dying?). Hey, thanks Tim. You just can't live life that way, not really. So Angela and Brad will go home and pull out the pictures they've taken of Matthew, and remember his life with them. I hope Angela never again feels regret about something as small as a first word. Life is more than just a series of moments. Annika was taken off the ventilator a week after Matthew went back on the vent. A few days later Angela stopped by, and saw Annika sitting up in bed with her eyes open. Lovely friend that Angela is, she cried with happiness to see Annika's eyes open again. But I know she was seeing what she wanted for herself more than anything else in the world, and we hugged and we hoped for Matthew, too. Annika's first word off the ventilator was "More." More: the grasping of life with both hands. But also, More: the very essence of grief.
If you'd like to send a card to Brad and Angela or make a memorial in Matthew's memory, the information will be posted on Matthew's web page in the next few days.


Blogger Phantom Scribbler said...

Oh, Moorena. My heart is breaking for Matthew's parents.

1/16/2006 1:44 PM  
Blogger Sarahlynn said...

What a lovely tribute.gnzhi

1/16/2006 1:58 PM  
Anonymous Anonymous said...

just sitting here crying, and wanting to comfort the strangers i read about. I never again want to tell my children 'just a minute' in my 'too busy mom' voice i seem to have now and then...

And it is so good to hear anni is doing so well.

1/16/2006 2:00 PM  
Anonymous Laurie, Ashley's Mom, CLASS said...

Moreena, I wanted to leave Matthew's parents a message on his website but I am unable to log in. Can you help?

I am happy that Anni is recovering well...what a fighter you have there!

1/16/2006 2:15 PM  
Anonymous Mary Lee said...

A beautiful eulogy for Matthew.

1/16/2006 3:13 PM  
Blogger Running2Ks said...

I am just weeping in devastation over the loss of Matthew, that special little companion. I am so sorry. So very sorry for everyone's great loss.

And my heart is hopeful that Anni will continue to recover as you rejoice in more of her firsts.

1/16/2006 4:24 PM  
Blogger monica said...

I don't know you but your litle girl, your precious family, and your friends will be in our prayers. Thank you for sharing this beautiful, heart breaking story. I will go run and play with my son now. If I could hug you, I would.

1/16/2006 4:59 PM  
Anonymous Joanna said...

Any of us parents who have spent time in the PICU with our child have experienced how a child's situation can change so quickly in either a wonderful or heartbreaking way. I will be praying for Brad & Angela and of course you. I am so happy that Anni is finally out of the PICU. Hoping for good days and good nights for you both.

1/16/2006 6:17 PM  
Blogger Jen said...

Oh no. What lovely words you've written.

I will keep them in my prayers.

1/16/2006 6:29 PM  
Blogger Rev Dr Mom said...

Oh, Moreena. I have tears in my eyes as I read this, for Matthew's parents and for all parents who've lost a child.

I am so happy that Annika might soon be out of PICU. You all remain in my prayers

1/16/2006 7:11 PM  
Blogger Sarah said...

Oh my Moreena. I got the e-mail from Matthews care page. I have been following his story, and was praying for him to pull through. My heart breaks for his family.

1/16/2006 7:22 PM  
Anonymous Jamie said...

Your way with words is so profound. I hope Matthew's parents get to read your words. Still sending prayers to them and you.

1/16/2006 9:37 PM  
Anonymous Rowan said...

Oh my. You give such a beautiful tribute. I have nothing to add except my love. I feel so deeply for you all. Such joy for you. Such sadness for Mathew's family.

1/16/2006 9:49 PM  
Anonymous chasmyn said...

This hits WAY too close to home. This is a beautiful tribute to Matthew's parents. I am so, so sorry for them. I know too well the journey they are on. My heart is with them.

1/16/2006 10:14 PM  
Blogger nancy said...

Prayers. For everyone.

1/16/2006 11:15 PM  
Anonymous Sheryl, Justice's mom said...

my greatest fear...and yet it took your tribute to Matthew to remind me to take a breath and appreciate my exasperating moments with Justice because they are moments I get to have....

I am thrilled for Anni's gains and sorry for the loss of Matthew

Prayers for all...

1/17/2006 3:02 AM  
Blogger Kathryn said...

You have said all that could possibly be said, so beautifully. I'm full of such conflicting feelings right now..of joy and thankfulness that Anni is doing so well, but such saddness for little Matthew's parents.
Praying for all of you.

1/17/2006 6:06 AM  
Anonymous Anonymous said...

Oh Moreena, how beautifully you express things, both minutely everyday and vastly existential--and how beautifully you link the two. I am sorry that Annika's recovery (hooray!) is twinned so sadly with Matthew's death. Thank you for sharing a bit of his life, along with hers.

xo Catherine

1/17/2006 9:03 AM  
Anonymous Lauren said...

Hi Moreena,

I'm so sorry to hear of the loss of your special neighbor.

But I'm also so happy to hear Anni's good news. I hope things continue to look up.

Let me know when you or Anni are up for a visitor, or even just in need of a quick hug!!

Love, Lauren

1/17/2006 9:34 AM  
Blogger Shelli said...

That is more than sad. I am sorry for their loss and rejoicing for Annika's increasing recovery.

1/17/2006 10:17 AM  
Blogger cheesehead said...

This is just so, so awful. Words cannot express. I'm praying for everyone who loves Matthew.

1/17/2006 10:22 AM  
Blogger ccw said...

A beautiful and touching post for Matthew.

1/17/2006 10:36 AM  
Anonymous Anonymous said...

I followed Matthew's last weeks after you last wrote about him.
I'm heartbroken for him and his family.

1/17/2006 11:07 AM  
Blogger halloweenlover said...

I am crying here too, what terrible and wonderful news in the same post. I am sending prayers to Matthew and his family also.

1/17/2006 12:19 PM  
Anonymous peripateticpolarbear said...

This is beautiful. (o)

1/17/2006 12:48 PM  
Blogger Yankee T said...

Oh, Moreena, what a beautiful post on the hardest of all topics. Bless you (always),all of you.

1/17/2006 12:48 PM  
Anonymous Candace said...

Thank you Moreena for sharing this with all of us. I can't imagine what Matthew's parents are going through. I'm overjoyed that Annika gets to leave the PICU. I know we can't live every single minute like it's our last, but what a reminder to treasure our loved ones in what ways we can.

1/17/2006 3:00 PM  
Anonymous Tammy & Janna said...

So glad to hear that Annika may be getting out of PICU. So sorry to hear about Matthew. I can only imagine their pain. You are in our thoughts and prayers...and Matthew's family too.

1/17/2006 3:52 PM  
Anonymous Anni Metz said...

as everyone else has said, you wrote this beautifully. i've been keeping matthew in my thoughts along with anni these past few weeks as i read about the latest happenings in the PICU, and it's heartbreaking to hear that he's gone. i hope anni continues to get better and that you continue to embrace and enjoy and celebrate your daughters even through the hard times! keep the good news coming! -anni

1/17/2006 4:43 PM  
Anonymous Crystal LaMadline said...

Through tears of joy and sorrow, I read your latest post. My heart and my prayers go out for Matthew's family. I am happy for your family also. Hopefully you will be home soon. Good luck to you, and I hope to hear you are in a "normal" room soon!

1/17/2006 5:18 PM  
Blogger susan said...

Moreena, I don't know how you find the grace and beautiful language to write about the most heartbreaking of topics. My heart goes out to Matthew's family.mj

1/17/2006 7:03 PM  
Anonymous Sarah said...

I've never posted before, although I have followed your family's story for the past few months. The loss of Matthew is devastating and must be difficult and leaving you guilt-filled as your beautiful Anni is slowly recovering, yet something your friends, made during the most difficult times, will now never get to experience. What a beautiful tribute to Matthew's parents. They appear to be the most loving and well-intentioned parents dealt the most difficult hand in parenting, the loss of their child.

Your observations on living today like the last rings so true. While it would be wonderful to have no responsibilities and have days filled with laughter and fun, the realities of living life must preempt living for the moment constantly. Perhaps one should not be live each moment like it could be your last, but take life as it is given and do the best that you can with the hand that your are given. Life unfortunately creates regrets, however, the regrets may hurt just a little less with the knowledge that you lived the best you could with the information and circumstances you had at the time.

I hope Anni's progress continues and soon you will be celebrating her homecoming and your family being able to live a little more "normally."


1/18/2006 12:53 AM  
Anonymous Anonymous said...

Moreena -

First I am sooooo happy to hear that *our* Anni is improving. I hope she is soon able to be home. What a little trooper she is! Bless her heart, her questions - I'm sure this experience has made her do some *growing up*. No child should go through all that she has.

Then, Matthew. I actually read this yesterday and just could not comment. My heart breaks for his family. I cannot imagine what they must be going through. I know that Matthew and his parents have touched your life and I'm sorry you are grieving. I will visit his page today.

Big hugs to you all!!!


1/18/2006 7:33 AM  
Blogger Moreena said...

laurie: I don't know how the carepages work, exactly. But maybe you can just try re-registering with a new username and password?

Jamie: Yes, they have had a chance to read it because I sent it off to Angela to make sure she was OK with what I had written.

Chasmyn: Yes, I know. I am so sorry and think often of the parents who have had to go through such loss. My heart is with you, too.

1/18/2006 10:13 AM  
Anonymous Cheryl and Angel Haley said...

When you described losing your child in the mall, and how it feels for that instant until you find her really is just like that
And as I have said in my own journal over and over again, grief for your child is relentless. Every waking moment must be spent in grief.
It sounds like Angela is a good friend. I am glad, she will need you in the months and years to come.
I continue to pray for sweet little Anni.

2/05/2006 9:11 PM  

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