Wednesday, December 23, 2015

I Don't Have Time for Tears Today

I don't have time for tears today.

There's a house to clean. Donations to drop off. Cookies to bake. Smiles to fake. Groceries to buy. Presents to wrap. Laundry to fold. Floors to mop.

All these tasks on my to-do list need doing.

So, I don't have time for tears today.

And yet, they fall anyway.


Saturday, December 19, 2015

I Would've Brought a Casserole

Grief takes your mind to some pretty peculiar places.

Since losing our 9-year-old daughter Addie, I've occasionally allowed myself to build a new reality, one in which my child is still here and this happened to someone else.

Someone else I know.

It's never anyone in particular. And it's not as if I'd ever wish for this to happen to anyone. I just wish it didn't happen to me.

With that new reality firmly in place, I think about what I would've done if I were the friend or the friend of the friend or the mere acquaintance that occasionally said hi in the grocery store. Basically, if I were anyone other than the mother of the child who was diagnosed with cancer and died. If I were this person, this magical person who still had all of her children living and breathing alongside her, what would I have done for this grieving mother and her family? Well, of this I am sure: I probably would've brought a casserole. Something cheesy, delicious, and warm. Something sure to bring comfort in a time of crisis.



And that's probably all I would've done.

Sure, I'd wonder about the family, how they were managing, if they were managing. But I would've done this from afar. Which is why I'm amazed by the people who haven't been afraid to put themselves in the eye of the storm, to get their hands dirty, to walk with us in our grief.

Early on, we were told that our address book would change. That we'd be surprised by the people who would step forward. And disappointed by those who would not. They were right. Relationships have changed, friendships have been lost. But in their place new ones have taken root.

Within a couple months of Addie's death, I received a phone call from a woman I'd met just once before. It was a casual meeting at a Saturday morning youth basketball game. She was standing on the balcony, trying to snap a pic or two of her son. I had moved to the balcony in an attempt to wrangle two very active boys who had lost interest in their big sister's basketball game. She introduced herself, we made a few connections, and that was that.

And then our world turned upside down. And out of the blue, a phone call. From her. I know we don't really know each other, she said, but I'd like to take you to lunch. I want to hear about Addie. I want to learn about you. And your family.

And for some reason, after holing up in the house for weeks, I said yes.

That afternoon I opened up about Addie - what a treasure she was - and I worked through the details of her diagnosis and the road to her death, as a platter of Mexican food sat untouched.

What makes a person do that? Get in, get all tangled up in the complicated yuck that is our grief?

Because she didn't have to.

But I'm sure glad she did.

Because even now, three years later, I can count on her to check in on me from time to time and show up on my front porch - fried chicken in tow - just because she knew I was probably having a rough day.

And there have been others.

Those whose hugs have held me together at back-to-school nights when I was almost certain I was going to break right apart. Those who've listened to me tell the same stories about Addie over and over and over again, smiling and nodding because they know the stories are numbered. Those who know I'll never quite get back to the way that I was, but love me just the same.

How do you grow a heart like that?

I wish I knew the answer.

Because I'm trying awfully hard to work on mine.














Sunday, September 6, 2015

Landry's Big Girl Room Reveal

Landry spent the first eight months of her life sleeping in a crib in the corner of our bedroom. There was no chevron stripe for her. No lace detail on the lamp. No letters spelling out L-A-N-D-R-Y on the wall.



Nothing.

While I know babies don't need all that stuff and they don't know the difference, that they don't even see color until they're like four months old, I also know that moms do care about that stuff.

Only I didn't.

I couldn't.

I was still grieving the loss of my 9-year-old daughter Addie.

While I still grieve that loss every day and wish the transition from Addie's Room to Landry's Room involved simply moving a tween girl's belongings down to the basement bedroom as planned, that isn't how it shook out. The tween girl wasn't here to set up her new digs, to pick out her new bedding, to sort through her stuff. And so, I've spent the last three years working on that grief and, yes, working toward a space for Landry.

In what a part of me will always refer to as Addie's room.

I won't go into all of the work that went into arriving at a place that we felt we could do this. Notice I said we here. This was a we thing, not a me thing (well, the decorating part was). All I can say is that it was arduous - torturous at times - and I'm proud of the work we've done.

And the room turned out OK too.


It's kind of funny because when I first started this blog five years ago, I'd intended for it to be a way to keep track of our home improvement projects. And here I am kind of detailing a project that sort of involves home improvement, I guess. So, I kind of feel like I need to get all bloggy sounding again. And all bloggy sounding sounds like this:

The first order of business (see how bloggy that sounds) was painting the room. OK, that's a complete load of bull because there was a lot of behind-the-scenes stuff (messy stuff) that had to take place before we got to this point. But anyway, the first thing we did was find a wonderful person to come in and paint the room for us. She was one of Addie's teachers and we knew she was the woman for the job.

Before she could touch the walls, however, we all took our turn writing notes to Addie. Everybody but Landry, of course. I didn't really want to encourage her to write on the walls. Some wrote more than others, but each note was personalized and, in my opinion, perfect.



There were a couple of DIY projects (as DIY as I get anyway). Here's a look at a bench I bought off that garage sale three years ago. I guess you'd call this the "before" shot.


And here's after:


Here's a little pair of owls I picked up for $1 at a thrift store.



Cute, huh? Here they are after:




The pink frame was a thrift store find as well. Only it wasn't pink until I got my hands on it. Notice the A and the L for my two girls. If you look real closely, you might even notice a chevron pattern on that L.




Addie continues to have a place in the space, just as she continues to have a place in our hearts.








Moosey keeps watch atop the bed.




And I'll forever believe that my two girls are in some way connected.




Overall, I'm happy with the room. It's tough enough to withstand Landry's fury and sweet enough to honor Addie's memory. And as with any space in my house, it'll continue to be a work in progress.

Just like I'm a work in progress.







Thursday, September 3, 2015

Tell Them

I have a spool of yellow ribbon sitting on top of my dresser.

And I'd like to give a piece of it to you.

But usually it's not my style to put things out there.

To put myself out there.

This is different.




Because I have this yellow ribbon.

And I have something that I care deeply about.

I'll cut up a three-inch strand. I'll find a safety pin and I'll get it to you. If you need me to run it by your house, drop it off at work, drop it in the mail, I will. I promise.

As long as you promise me one thing.

When you wear it and people ask you why you're wearing a yellow ribbon, you tell them.

You tell them about the little girl who had plans to be a vet.

The little girl who was practically a card-carrying member of the ASPCA. The little girl who sold lemonade in the front yard and sold her family on spa treatments in her bedroom. All in the name of animals.

You tell them about the little girl who didn't live to see double digits.

You tell them that kids get cancer too.

You tell them September is Childhood Cancer Awareness Month. That we're going gold.


And you tell them about that little girl.

You tell them about the mother who tries with all that she can to live her best life each day, but finds herself failing miserably time and time again. You tell them about the dad who says things aren't good again, not yet anyway.

You tell them about two rough and tumble little boys who said goodbye to their big sister one morning and that was it. The last time they saw her. You tell them about the baby sister who knows big sister only through pictures and videos.




You tell them kids get cancer too.

You tell them it's tough to talk about. And it is. But tell them we need to talk about it.

You tell them 43 children were diagnosed with cancer today.* Forty-three. Trust me, their parents don't know which way is up.

You tell them 12 percent of children diagnosed with cancer will die.

You tell them childhood cancer doesn't discriminate. It doesn't care if you're rich or poor, black or white. It doesn't care if you have a slumber party planned for your 9-year-old daughter's birthday next week. It doesn't care about, well, anything you had planned.

You tell them about 1 in 285 children will be diagnosed with cancer by the time they reach age 20.

Yes, you read that right.

You tell them childhood cancer isn't all that rare.

You tell them research for childhood cancer is grossly underfunded.

You tell them how much that hurts your heart.

How much it hurts mine.

You tell them about the little girl - my little girl, the one who was diagnosed on a Tuesday and died six days later. Tell them what her 9 years on Earth were made of and think about what her life would've been like had she been given 60 or 70 more.

And you tell them that kids get cancer too.

Behind my yellow ribbon is an orange
one that Addie's friends distributed
three years ago.

*Statistics taken from curesearch.org, stbaldricks.org, and cac2.org.


Saturday, August 29, 2015

A Good Life

Two days after we lost Addie I stood at the end of our driveway with my childhood minister. There were others there of course, stopping by to offer comfort and casseroles - but the words she shared with me that day, well, those are the words that have stuck.

"Life will be good again," she said, placing her arms around me. "It will be different, but it will be good."

Life will be good again.

I can't remember if I believed her then, but I knew her words were important. Because she was speaking to me not as a minister, but as a mother.

A mother who knows.

I think of her often.

She was, after all, the one who, despite living halfway across the state, agreed to marry us 17 years ago.

I think of that hot July day often too.




Of course we knew there would be challenges, but we were banking on life's normal challenges. But we made promises that day. That we'd stick together when everything else fell apart.

And when it did, there we were making promises again in a hospital waiting room. Promises to stick out this life, to keep breathing even though both of us just wanted to stop. Promises to live for and to love our children with what was left of our hearts.

Although I can't pinpoint exactly when, I do know that somewhere along the way to making good on our promises, I began to realize my minister was right.

Life will be good again.

There are basketball games in the driveway. Walks around the loop. Cuddles before bed. And water fights.







Glimpses that life will be good again.

But there will always be a catch in my throat. A child missing. One less plate at the dinner table. And one less kiss goodnight.

Still, I have to believe it'll be good again. Different, but good.





Thursday, July 2, 2015

My Other 'Middle' Child

Two years ago I took the time to write about Isaac, my middle child. Isaac had nearly five years with Addie before she died. Because of this, he was the one I was most concerned about, so he was the one who did the grief groups with me. He was the one with the late-night talks. The extra hugs. The extra attention.

Meanwhile, Tripp was left asking me who was going to fill his sippie cup as I lay crying on the kitchen floor.

It's Tripp's turn now and this post is long overdue.

***

Tripp was eight days away from turning 3 years old when Addie died.

Happy Birthday, Tripp. 



I remember his birthday quite well, which is nothing short of amazing considering the fog of grief and all.

Maybe I can remember the details of that day because, well, it was excruciating.

There, I said it.

My 3-year-old's birthday was excruciating.

I remember sitting on the edge of the fireplace with a video camera in my hand, watching it all unfold on my two-inch screen. He opened not one, but two Captain America action figures, and I sat there waiting for it all to be over. Waiting for an acceptable amount of time to pass so I could go back to my bed and pull the covers over my head.

I spent most of the summer like this.

I spent most of that year like this.

Oh sure I took the boys places. To the park. Swimming lessons. Museums. Even on horsey rides.



But I wasn't there.

It was like I was a spectator to my own life. I watched it; but I didn't live it.

And so, I missed Year 3 for Tripp. One of my most favorite years. That year when everything that comes out of their mouths is cute and sweet and lovely. That year when Addie couldn't say tomorrow and said 'tah-mah-wer' instead. That year when Isaac called hot dogs 'dah-dahs.'

I missed it.

Today Tripp is 6 years old and I feel like I'm just getting to know him and how remarkable he is.

I don't mean for this to be a Braggity McBrag post. I'm simply trying to capture what it's like to live within the same bubble as this little guy.



 And Tripp is just that: a little guy. He weighs maybe 40 pounds. Soaking wet.






He's actually what you might call scrappy. Just ask Isaac.



And while he has 27 t-shirts in his closet (seriously, I counted them), he never seems to have one of them on. And yet, he produces at least three "dirty" shirts each day.




He's out there. Definitely. I mean out there.

I'm not sure if he can't hear me half the time or chooses not to.

Regardless, I find myself falling deeper and deeper in love.



And here's why:

Tripp can't wait to grow up and be a chef. 

At Subway. He plans on working Mondays and Tuesdays because that way he can have a bunch of days off. He's more than a little concerned about being fired, so he plans to become a dog trainer if he ever gets canned from his cooking gig.



He loves the Royals and sweets. Stuffed animals too. He's up for just about anything that involves a ball. Basketball, baseball, golf, you name it. He swears he's better at Isaac at certain things. He's certainly better at throwing a cheap shot or two.

I can't remember if this was the 1st, 2nd,
or 3rd time he broke his collar bone.

His favorite color is orange and his second favorite is green. Brown comes in a distant third. Somebody has to love brown, I guess.



There's a lot of emotion in that little body. In fact, he can't hardly contain it. It bubbles out at times for better or worse.

Sometimes I have to ask him if he needs a little extra love - usually after he's done something like touch little sister Landry's arm. Repeatedly. Like to the point of that sweet little girl letting out an ear-piercing scream that would be an indication that perhaps he should stop. Just stop. Touching her arm.




He's quick to laugh.

Uncontrollably.

Especially if bathroom humor is involved.

You can just about guess what he thought of
this word coming up on the iPad.

He's quick to stomp off when things don't exactly go his way.

Quick to dance.

And quick to love.

In fact, Tripp's the one who tells me on a nearly daily basis that I'm the best mom he's ever had.

Yes, you read that right.

The best mom he's ever had.

Hmmmm.






Our Next Move

Note: This is the 13th and final update I made to Addison's CarePages site. 

Posted Jul 30, 2012 10:25am
Four months and four days have passed since we joined the club no parent ever wants to be a member of.
Birthdays have come and gone.
School dismissed for the summer.
We survived Mother’s Day and Father’s Day. Barely.
And yesterday Isaac and I went on our first back-to-school shopping excursion. By excursion I mean a trip to Amigo's, Target, and Famous Footwear. (Soooo different from Addie and my annual event)
That must mean school is right around the corner.
Four months and four days have passed.
Time marches on. But how?
Today I realize it’s time for me to move my writing from the CarePages site to the blog I created when we first started our country adventure two years ago. After all, nobody visits CarePages to find out how a family is doing after the hospital stay comes to an end.
So, if you want to see how our story develops, feel free to follow us at www.halfwaybetweenhopesanddreams.blogspot.com. If you take the time to peruse previous entries, you’ll notice a much different picture of our family emerges.

My last post was December.
Before.
As a former English teacher I spent time teaching kids about the tone of a story and the voice of a writer. It doesn’t take an A+ student to realize the tone of our story has changed as has my voice.
After.
Hopefully I can provide a little insight as to how one family is handling the worst life can throw at them. I can’t promise it will always be pretty. Grief can be a dark, dark place. So, if you’re not up for it, I understand.
In time, however, I look for a story of hope to emerge. I cling to that possibility.
I can't promise I'll be the most consistent about posting either. Some days I write at a frenetic pace. I couldn't stop the words if I wanted to. Other days? Nothing.
If I understand correctly, you can subscribe to that website and email notifications will go directly to your inbox much like they do on CarePages. You’d have to ask one of my three followers for the details on that. (insert smiley face)
For now, I do want you all to know how much we appreciate the support you’ve shown us thus far. Whether it was a visit in the hospital, a note to Addie, a donation to the humane society, a meal, a hug, an ear, we are so grateful to have each of you in our lives.
www.halfwaybetweenhopesanddreams.blogspot.com

Light Bulbs & Life's Not-So-Little Mysteries

Note: This is the 12th update I made to Addison's CarePages site. In this entry I announce my pregnancy. A local reporter said it best when she wrote, "a heartbeat where there was so much heartache." 

Posted Jun 21, 2012 9:33am
In the weeks following Addie’s death, I cursed the sun.
How dare it shine when my world is falling apart?
I cursed the roses in my garden, the daylilies too, and especially, the $7 plant that I rescued from a Wal-Mart parking lot last summer.
It could barely hold up its head last year.
This year, it’s thriving.
How can I nurse back to health a scraggly plant that I could give two cares about, but my daughter? No.
I cursed the light bulb in our bathroom. Still do, actually.
The same darn light bulb that we’ve never had to change in the two years we’ve lived here.
It continues to shine.
So I’ve lost a child and gained a wee bit of crazy.
Whatever.
Here’s something else I’ve gained.
Knowledge.
The knowledge that life goes on even though we really don’t want it to.
Summer activities have resumed.
Softball. Swimming. And Saturday night, the sound of fireworks somewhere in our neighborhood.
Birthdays have come and gone.
First Tripp, then me, Isaac, and this past weekend, Scott.
And perhaps the cruelest reminder of them all, my belly continues to grow.
Oh yes, did I forget to mention that?
The same day Addie got sick – that beautiful day of sun and softball out in the front yard – we found out we were expecting our fourth child.
So, while Addie, Isaac, and Tripp busied themselves around the house, Scott and I sat in disbelief on our sectional down in the basement, trading thoughts on the changes that would need to take place this fall.
Sleeping arrangements (we have a three-bedroom house).
Baby gear (we sold it all at the garage sale).
Daycare (we’ll have three in daycare).
These are the things we worried about.
And then Addie got sick.
But not to worry, it’s a viral infection, doctors said.
Let it run its course.
Over the next few days we did just that.
But at the same time, I also did a few things any other pregnant woman would do.
Take another test (and another one after that).
Call David’s Bridal and discreetly ask if they’ll be able to do anything with the bridesmaid dress I’m supposed to wear in four months. And then ask that they call my cell (not my home number) with their answer so my mom who’s home with my 9 year old doesn’t find out I’m pregnant (just yet).
Call around to find an OB in Lincoln, but quickly get frustrated that a couple of the doctors wouldn’t do appointments after 2:30 in the afternoon. Who can be gone from school that much?
Google “is it safe to run while pregnant” and find out that it is OK as long as you keep an eye on your heart rate. Continue to run and monitor up until the day we find out that Addie’s illness most definitely is not a viral infection.
It’s Acute Myeloid Leukemia.
And it’s going to take her life.
So while we’ve been fumbling our way through this bottomless pit of grief, asking day in and day out:
"Why Addie?"
“Why our sweet daughter?”
“Why, why, why?”
We’ve also been wondering why a baby and why now.
Apparently, life goes on.

Monday, June 29, 2015

A Not-So-Simple Question

Note: This is the 11th update I made to Addison's CarePages site. The questions from the boys continue to this day. While they're heartbreaking to hear and sometimes impossible to answer, I hope they never stop.

Posted Jun 12, 2012 8:54am
What color is cancer exactly?
This was the topic of Isaac and my bedtime conversation last night.
Not exactly the typical exchange between a mother and her 5 year old, but nothing seems to be “typical” in our house these days.
“Mom, is cancer red?” he asked.
“No. It doesn’t really have a color.”
Silence.
Which gave my mind a chance to do a little bit of reeling.
Color. Red. Color. Red. Color. Color. Color.
Red.
Suddenly, my mind stopped on the image of a little boy with a smattering of red on his index finger.
His first bloody nose.
Red.
“Isaac,” I asked. “Why do you think cancer would be red?”
Silence.
“That red on your finger was a bloody nose [not cancer].”
And finally, “I just miss Addie so much.”
I know, Isaac. I do too.
This is the “new normal” in our house. The one coined by support groups and counselors and random pages I run across while surfing the Internet. The one that involves a 3 year old promising to take me in his Cozy Coupe to Heaven and God to see Addie. The one that has me (mistakenly) saying “OK.” The one that ends with me telling that 3 year old that we can’t go to Heaven after he sprints into the house yelling to his older brother, “Isaac, we’re going to go see Addie!”
Again, my mistake (and most certainly not the first one I’ve made when we started this journey two and a half months ago).
So, what’s a mother to do?
That’s a great question.
No one gave me a road map for the grieving process and (thankfully) we don’t know too many people who have traveled this lonely road.
So, I guess I do the best I can.
Give ‘em a squeeze and a peck. Tell them I love them. And leave them with the promise that we’ll blow Addie a few more bubbles tomorrow.

Untitled

Note: This is the 10th update I made to Addison's CarePages site. I have to believe I found this treasure when I needed it most.

Posted May 17, 2012 8:53am
Sometimes something comes along just when you need it most.
It’s no secret this week has been particularly tough for me.
I completely underestimated just how awful Mother’s Day could be when the ring leader of all things crafty and sweet isn’t around to make you something, well, crafty and sweet.
The downward spiral continued Monday, Tuesday, Wednesday, as the school year came to an end and I realized there wouldn’t be the normal flood of activities to fill our summer calendar.
And then I found another piece of Addie.
I wasn’t looking for anything in particular. Well actually, I was looking for something to wear to work today and since I haven’t exactly gotten around to moving the spring and summer clothes up to our bedroom, I went down to the spare room to rummage through the dresser.
That’s when I saw it.
A piece of drawing paper. Red ink. Addie’s handwriting.
Something I'd never seen before.
This is what it said (you’ll notice I haven’t edited it at all):
I was sitting on the front porch…rocking in the rocking chair. I wondered what I’d do with my life, what that I would be. And I said, I can be anything that I want. Cause this is the Free USA. Land of the free with glory. I can be anything. My mom told me when I was young, you’ve got to believe. Got to believe.
It filled three-fourths of the page and probably wasn't completely finished. Yet to me, it was perfect.

Sunday, June 28, 2015

Simple Pleasures

Note: This is the ninth update I made to Addison's CarePages site. I mention something about my clock stopping the day Addie died. It's true. It did stop. It has sense resumed, but our lives have forever been split in two. There's before. And after.

Posted May 15, 2012 9:48pm
Ice cream.
That’s what Addie would’ve raved about today.
Right after she finished bragging about the fact that she was done with school for the year and I still had another week.
Today was the last day of school for Syracuse students.
That would have meant a stop at Jo-Bob’s after school. She started making plans for that about three months ago. Actually, five months ago. You see, when I talk about Addie, it seems my clock stopped sometime around March 26. So, when I say three months ago I mean three months before the day that she died.
So, ice cream is what she would’ve been looking forward to. Vanilla no doubt. Nothing fancy. Just plain vanilla.
That’s just the way she was.
And think back to your childhood. Wouldn’t an ice cream cone have made your day too?
As would the chance to spend some time with friends.
At the pool.*
At the ball field.
At home.
The way it’s supposed to be.
Last summer, our phone rang off the hook. Little girls calling for this and for that. And now, quiet.
Except for the little girl who called a couple of weeks ago. Wrong number.
Normally, I’d be looking forward to summer.
And now, it’s just another thing for us to get through.
*Yet another thing that Addie was plotting for this summer. An “account” at the pool. $20 in that account and she’d be in heaven. Poor choice of words, I know. But anyone who's dropped off a tween at the pool knows that a little bit of money and a little bit of freedom is, in fact, heaven.

The Day Addie Got Sick

Note: This was the eighth update I made to Addison's CarePages site. Certainly God must've gotten this all wrong. I'm still here and she's gone. It's been over a week. And so began the telling and the re-telling of our story. I've turned it over in my mind at least a thousand times, desperately hoping for a different outcome. 

It never changes.

Posted Apr 5, 2012 2:41pm
The day Addie got sick, I went to Target.
I picked up a couple of shirts for Isaac, some Easter decorations, and Starburst candy for the kids.
I know this because I still have the receipt tucked in my purse.
An after-school trip to Target was a break from my typical Wednesday afternoon routine. On a normal Wednesday, you’d find me dashing out the doors at Waverly Intermediate School, zipping down 148th Street, and making my way back to Syracuse in time to pick up the boys from daycare and Addie from BeLoved. But not this Wednesday.
Scott had an audit scheduled for that day, it went quicker than expected, and he would beat me home. So, sure, go ahead and go to Target.
The day Addie got sick, she enjoyed a trip to the park with her BeLoved friends. I know this because I have a photograph to prove it. I’ve studied the photograph carefully, scanning her face for a trace of the illness that was going to steal her from us. You know what? She looks like every other kid down at the park that day – except she’s wearing a brand-new shirt. I know this because I remember giving it to her that morning.

It was supposed to be unseasonably warm that day, so yes, Addie, you can wear shorts. As we dug through last summer’s clothes, we seemed to be coming up empty in the shirt department. So I went to my bedroom, fished a shirt out of an Old Navy bag and said, “Here, wear this. It’s an early birthday present.”
The day Addie got sick, she and Scott, Isaac, Tripp, plus a neighbor kid or two played softball in the front yard. I know this because I grabbed my camera to snap a few pics. OK, mainly I wanted to snap a picture of Tripp in the pink boots, but I got one of Addie too. You can’t see her face, but she’s holding the bat and looking off in the distance (watching her dad or Isaac chase after a hit).
The day Addie got sick, I decided to take her to the ER. The bill came today.
So now I have all these reminders of just how normal our life was the day Addie got sick.
There was no warning, no indication that in a little over a week, the little girl we love so much would be gone.

Looking In

Note: This is the seventh update I made to Addison's CarePages site. By now she'd been gone four days and I was still here, desperately searching for traces of her. I continue to do that today. Some days I'm lucky enough to find something new. Others, I'll simply pull the Valentine out of her backpack and remember a Wednesday way back when she made it.

Posted Mar 30, 2012 8:14am
These days, I find myself wanting to hold on to every piece of my dear, sweet Addison. That means I've done something mothers really aren't supposed to do. I've started snooping around her room.
And really, what I've found is a window to who my daughter really was.
A journal that details the highlights of a 9 year old's life. "We had basketball practice. My dad's the coach. My number is #1." "It is starting to kinda snow. Yey! I can't wait to build snow forts!" "We have our gingerbread house making tomorrow. Mom is coming. We bought LOTS of candy. We will have so much fun." "We went to the Humane Society 2-day. We played with a dog named Case."
Such joy and excitement for life's simple things. Things that, at the time, seemed so small, but in reality were huge in this little girl's life.
Her reading and language notebooks. One assignment asked students to write about their favorite place. Addison described the cabin. Another asked them to list three things they would wish for if they had the chance. Here's Addison's list:
1. A pot of gold (she was human, you know)
2. A fat hamster
3. For all shelter animals to find a home
Even though it will be difficult to collect her belongings from school, I can't wait to get my hands on more of her writing.
A valentine tucked deep inside her backpack. It was addressed to me and arrived a month and a half late. Somehow in the hustle and bustle of life, that Valentine never made it to my hands. My guess is she made it at BeLoved, the Wednesday night church group she attended.
Wednesdays were always tricky for us. After picking her up at church, we would race home for a quick dinner and then rush off to piano lessons. By the time we got home, the Valentine had long been forgotten. That's OK. I've been pleading for a sign. Maybe this was it.

Little Pieces

Note: This is the sixth update I made to Addison's CarePages site. At this point I'd made it through one day without my Addie. I remember wishing I could wake up from this horrible nightmare. And, I remember wishing I could fall asleep and never wake up again.
Posted Mar 27, 2012 12:15pm
I know I told more than a few visitors yesterday, "I have no more tears left."
I lied.
Every corner of this house is filled with Addie. Her backpack rests next to the chair right where she left it. Her most recent Sunday School lesson is tucked in the Bible laying on her bed. Hair ties in the bathroom. Craft projects in the playroom. Her birthday list. The makings of a pet hospital. A Laffy Taffy stick dad had bought for her a few days before our world turned upside down.
These pieces of her trigger the tears and twist the knife in my gut just a little bit more. My heart is broken. It aches. I'm the one with the words; my husband isn't. But his face tells the story.

Saturday, June 27, 2015

Love/Hate Relationship

Note: This was the fifth update I made to Addison's CarePages site. I remember sitting and watching the numbers on this machine late into the night. Things seemed OK, so around 9:30 or so, I went down the hall to get a little bit of sleep. A couple of hours later Scott said I needed to come back to the room. Things were definitely not OK. An hour or so later, my sweet, beautiful first-born baby was gone.

Posted Mar 25, 2012 12:04pm
I really have a love/hate relationship with the ECMO right now. I love it because it's doing much of the work of Addie's lungs, heart, and kidneys, which allows her to get some much-needed rest. But, because her blood needs to flow freely through the machine, she must receive medicine to thin her blood and reduce clotting. So that means she's going to bleed.
That's where we're at today. The bleeding at the cannula site has increased. Luckily, it's not as bad as it was Friday when doctors had to go back into the site and fix an arterial tear. But, it's worse than it was yesterday, which means she getting more transfusions. Doctors will re-evaluate the situation at 3 p.m.
In addition to that issue, there is additional fluid build-up in Addie's lungs, so today they're doing as much as they can to pull that off. But, here's where it gets tricky. They can't pull it off too fast because her blood pressure will plummet. Not an ideal situation, but that's what we're dealing with.
In times like these, I turn to this site and read the comments to her and play the video clips of her brothers. So please, keep your words and prayers coming.
Thank you!

A Good Day

Note: This is the fourth update I made to Addison's CarePages website and it hurts my heart to read it.

Posted Mar 24, 2012 9:23pm
I hesitate to post this for fear of a big jinx, but, today was a good day.
First, and most importantly, Addison made some great strides today. The bleeding from the cannula site in her leg has slowed, some of the swelling has gone down, and they have been able to go to 60 percent oxygen on the ventilator. So, that's a good day.
Second, we were surrounded by family and friends who filtered in and out of the waiting room all day long. This provided a much-needed break (and a few good laughs) for a frazzled mom and dad. In addition to aunts, uncles, and friends from way back when, two very important visitors showed up: our baby boys Isaac and Tripp. Hugs, kisses, and a couple of "I love you, Addie" messages to our little girl on the iPad made this, you guessed it, a good day. I can't even tell you how excited I was to place that iPad right next to Addie's ear and press play.
Third, the unbelievable support for "Team Addie" continues to grow and grow. We've been absolutely overwhelmed by the messages posted to this site. As we scrolled through page after page, we saw names of old friends, new friends, and people we've never even met. To us, that's absolutely amazing. But the support doesn't stop there. Not a day goes by where we don't have people ask, "What can we do?" And when we can't think of ANYTHING for them to do, they go out and find something to do. In fact, today a group of wonderful women (armed with cleaning supplies and a couple of bottles of wine) broke into my house and scrubbed it from top to bottom. I'm so thankful for that (and just a tiny bit mortified about what they might have witnessed). This afternoon, neighbors pitched in to spray for weeds and mow the yard. Thanks, guys!
So all in all it was a good day. But, Scott and I embrace this good day carefully. We try not to get too high because we know just how low low can be. It's an awfully long drop. But with your prayers, support, and love, you truly lift us up. Please, keep up your good work.

Uphill

Note: This is the third update I made to Addison's CarePages site. We were in ICU and spent our days talking to Addison and reading the messages people had left for her on the website. I hope with everything I have that she was able to hear each and every word. 

Posted Mar 23, 2012 9:27pm
A couple of weeks ago, Addison and her friend L decided to venture down the road on their bikes. Their destination? G's house just a mile or so up the road. When they reached G's house they spent a couple of hours doing what girls do: playing.
When Addie and L returned to our house, they admitted they were a little tuckered out. Why? Because in order to get to G's house, they had make their way up a hill. It was hard work. The kind of hard work that makes you want to get off your bike and push.
As doctors prepared Addie for another procedure, I talked with her about that hill. It seems she's reached another one just like it. So I asked her to keep working hard to get up that hill. She can pedal, she can push, she can do whatever it takes to get up that hill. Because once she gets to the top, it'll be a lot easier.

Monday, June 22, 2015

Wonderful Doctors & Nurses

Note: This is the second update I made to Addison's CarePages site. She had been diagnosed with Acute Myeloid Leukemia three days prior and we were quickly becoming versed in hospital lingo. Even today I am still in awe of the lengths the doctors and nurses in the ICU at Children's Hospital went to, to save our sweet girl. At the time I wrote that I "only tend to focus on the good." I need to do that a little bit more now. There is good in my life. Every day, in fact. It just isn't as good without her.
Posted Mar 23, 2012 12:42pm
Scott and I had the opportunity to sit in on formal rounds this morning. We are constantly amazed at the sense of teamwork at this hospital. These doctors and nurses are true problem solvers who work together for the greatest good of the patient and we are so thankful for that. Since yesterday they located a special bed that allows Addison to be elevated. This helps with the blood flow issues to her legs. But before they located the bed, they tossed around different options to help her, one of which was finding three extra mattresses from around the hospital to help get her further off the ground. Luckily we didn't have to do that because the bed came in time. Still, their ingenious efforts are at work. In order for the ventilator to work properly, it also had to be elevated. So today I look at a ventilator resting atop a child's table (stolen from some corner of the hospital, no doubt). Problem solvers, I tell ya.
So about what they said (and I only tend to focus on the good):
Good news: Her white blood cell count has gone from 200,000 to 89,000. That means the chemo is working. Her lactate (sp?) has dropped from 20 to 3.something. A normal level is 2.5, I believe. So that's good.
Not so good news: We still have to keep an eye on the leg that is hooked up to bypass. It has swelled quite a bit and there's concern about proper blood flow. However, during rounds, nurses indicated that the leg had improved after they repositioned her and placed another pillow under it. So that's a move in the right direction.

Thursday, June 18, 2015

Messages to My Baby

Note: This is the first update I made to Addison's CarePages site. It was three days after she was diagnosed with cancer. By now we were in ICU. Doctors had worked hours upon hours to save her and she was alive. A day earlier a doctor had told us she would die. We never saw that doctor again. And on this day we were certain we would prove him wrong. 

Posted Mar 23, 2012 7:11am
"Goodbye, Addie. I love you."
"Love you too."
A simple exchange that happens between Addie and I every morning before school.
Good night, Goosie. I love you."
"Love you too, mom."
A night-time ritual between mother and daughter.
While miles of memories have run through my mind these past few days, it is the daily, every day exchanges that I keep coming back to. Addie has known love and shown love in her nine (almost 10) years. That continues through this challenge. When things were at their worst yesterday, I read 60 cards from her fourth-grade classmates. Why? To show her how much she's loved. I read messages off facebook from friends, family, and people we barely even know. Why? To show her how much she's loved. I surrounded her with various stuffed animals sent from friends and family both near and far. Why? To show her how much she's loved. I passed on the fact that various prayer chains had been activated and that literally thousands of people are pulling and praying for her. Why? To show her how much she's loved.
And so, the conversations continue. Why? I think you know the answer by now. But here's one more reason. One of my aunts relayed a story of a family friend who is an oncology nurse. Of course that's interesting given our current situation. But here's what really caught our attention. When she was 9 years old, this oncology nurse underwent cancer treatments just like Addie. While she too was sedated in the hopes of helping her to forget this trauma, she can recall the messages from loved ones. So our messages continue.
Please keep those messages and the prayers coming. They are absolutely appreciated.
Jamie