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.

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.

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.

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.

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

A Sacred Space

I've decided to move all of Addison's CarePages entries over to the blog. I'm not sure why really. I guess I feel like I need to have it all together. Safe.

Come to think of it, I'm not sure why I referred to Addie as Addison, her given name, in Paragraph 1. I do that from time to time. When she was here she was Addison to everyone else. Addie to us. Now that she is gone, and we've invited everyone in - through blog entries, through charity runs, through everyday conversation on the street - you've come to know her (and love her, I hope). So, you call her Addie too. And that's fine. In fact, nothing pleases me more than to hear from people who say, "I didn't know Addie, but I feel like I do."

But every once in awhile, I call her Addison. I guess I need to be different every so often. To remind myself that she is mine.

So, I'm asking for extra thoughts as I retrace my steps.

I'm entering a sacred space.