May 2013
1 post
My Silence Is Not Without Thought
Sometimes, I am quiet.
Sometimes, I don’t post what I write; instead of sharing, I keep it hidden… like the winner in a game of hide and seek. The difference about my game of hide and seek is that I don’t win by keeping everything tucked away; I end up losing. But I feel like I let all of you win. Well, kind of…
When I am silent, it is because I am hesitant to let you see the...
April 2013
5 posts
It is May
My house is quiet. Everyone is asleep. As I type, the rain storm outside begins to kick up again. I’m at the kitchen table, with only the light of the computer, and the sound of the rain on the roof, coming in through the back door.
525, 600 minutes since this time last year.
It is April 29th. Since there are only 30 days in April, that means May1st is Wednesday.
God help...
INVINCIBLE: incapable of being conquered or...
Invincible, I am not.
Yesterday I got a message. Actually, the accurate way to tell this tale is that I got a message in response to a message I had sent first.
My message was privately swept away by the invisible world of the internet to a mother in the Mid-west. Currently she is in NYC with her daughter. A friend of mine had commented on something this mother had posted to Facebook. I ended...
I Found It, but It Was Never Really Gone
It was the first time I saw it.
A few weeks ago, Partin Elementary had their kindergarten show. Every year, each grade has a performance. Each year, the show titles change for all the grades…except one grade; kindergarten. Kindergarten always performs One Big Happy Family. It’s a tradition. One that certainly did not escape my family. Long before Caitlin ever got to kindergarten she knew...
Good vs. Bad
It was a tragedy. There is no question that the hatred behind the destruction was (and still is) as intense as a burning fire that has gotten out of control. The bombing attack at the Boston Marathon is nothing short of sad. It would be unfair and disrespectful to minimize the physical pain and the emotional anguish of those affected by this horror. I will not do that now.
I am going to try and...
It's not "just because"
When life was normal, I would have taken my beautiful, new, handmade rainbow scarf and tucked it away safely in a drawer. I would have found a place in the closet, alongside my other ‘special’ things. It would have stayed there and been brought out on special occasions, to ensure nothing bad would come of the delicate symbolic gift I treasure. I wouldn’t have dreamed of wearing it in the kitchen,...
March 2013
2 posts
To Spank or Not Spank: Really, that's not the...
Before you begin to read this, I want you to know this is the most honest I’ve ever been. This entry is the one feeling, the one emotion, I haven’t shared with you before.I have allowed it to stay trapped inside, safely hidden away. It is all raw. The entry is long, gets heavy when you remember it was never fleeting or superficial for me, and takes a direction I don’t often...
It's definitely a first...
Want to know a secret?
I don’t have a baby book for my children. Not any; not even one. No baby books. Not for one child, or even one collective book for all of them. N-O-N-E
But HOW will I keep track of their ‘firsts’? you’re asking yourself right now. First time we held them, first tooth, first solid food, first steps, first day of school…. I’m going to start with the...
February 2013
3 posts
Measure It in Love
We are a complaining society. We tend to grasp the negative and exploit it verbally to anyone that we feel will listen. I’m guilty of it too often as well.
We gripe and groan to our significant others, friends and family, and children, to strangers in line with us, managers who are in charge of overseeing an establishment and sometimes to our own ears. We criticize to people who can make changes,...
Happy Heart Day
Today is Valentine’s Day.
Like most little girls, Caitlin loved Valentine’s Day (and every holiday). She would have picked out a pretty little outfit, with a sparkly headband. She would have spent hours in the craft room with me, making Valentine’s for all those she adored. She would have started celebrating last night, and wouldn’t stop until some time tomorrow morning. She would have giggled in...
The sky is getting bright, the stars are burning...
Imagine a summer day; it is warm and sunny. You are at a picnic with many friends. Adults are talking and children are laughing in the warm beams sent down to Earth by the sun. The smell of grilling food permeates the air. The picnic games begin; sack races, relay games and water balloons. Finally, the finale of all field day games begins. It is, of course, the tug of war. Two teams line up on...
January 2013
3 posts
It was a shiny, blue Highlander that caught my eye
I saw a Cheering for Caitlin magnet on the back of a new, blue, Highlander yesterday as I drove home. I followed it; around corners, at stoplights, past stores, and through Oviedo. The car continued down the road as I turned right into my subdivision. I don’t think I know the person driving the car.
I bought a planner today.
“It’s about time” right? I mean, after all, the New Year started...
It's What Caitlin Would Say
I received this from a fellow DIPG parent, who thought maybe I could relate. It is among many beautiful poems and writings I have been blessed to have had sent to me. But this one, well, I could actually hear Caitlin saying it, especially the ending. By the way, I am fine….;)
Ask My Mom How She Is My Mom, she tells a lot of lies, She never did before But from now until she dies, ...
Go Big or Go Home
It is a phrase used often. It’s meaning is self explanatory: when you’re doing something, give it everything you’ve got, or don’t bother….
It has been noted as one of my best qualities. People have said it is one of my shining characteristics. Family has told me it’s what they love about me, and others close to me have said it is something that makes me sparkle.
But, it has also...
December 2012
4 posts
Saturday, November 3rd...Part II
(You may want to read the entry from November 3rd before you read anymore of this one….)
I cleaned today. Well, I did the annual cleaning that takes place shortly after Christmas. It’s been on my mind for the last several days; and something I haven’t looked forward to, but I did it anyway.
And as I packed up and put away I cried. As I cleaned up the decorations and clamped the...
Winter Begins
The first day of winter was yesterday. It was the solstice. A gentle and loving text from my cousin reminded me that it was the darkest day of the year; the day with the least amount of sunlight. Her text finished by saying she knew my heart was closer to this day than the bright light of Christmas that was coming so soon after this dark day.
Those words stayed on my mind all day. They provided...
Thunder and Lightening
I am a fan of rainstorms. I like a good solid long lasting storm with lots of rain; but I’m not a fan of the wind, I’m hate it when the tornado sirens start screaming and I despise lightening. A good rain will engage all your senses and set your mind in a different mood. I love to sit on the back porch while it rains hard, causing my eyes to squint just a touch, to see all the drops...
Mr. Webster should hire me
In the last 11 months, I have been able to clearly define words and phrases that before I hadn’t truly understood.
The dictionary app on my phone defines heartbroken as “crushed with sorrow or grief.”
That’s not enough words. That definition doesn’t have enough emotion. Those words cannot possibly explain the depth absolute and sharp pain in my heart. It is heavier than crushed; it is...
November 2012
6 posts
Pacifiers and runners
Campbell started taking a pacifier when she was only a few weeks old. Out of 4 children she was the only one to ever want a pacifier. I promised myself, her and everyone around us that by her 2nd birthday we were going to be rid of it. As we approached that day I began to summon my strength and dig my heels in as I prepared for what certainly would be a battle. And then, well, you all know what...
It is Thursday November 15th
I have a story to tell you all.
It isn’t finished yet. I have a feeling, it will never be “finished”…
But, I’m writing a book about it anyway, and I’ll just have to find an ending point. It will take me some time to complete what I have started. So until I can, I have another story to share with you. I did not write it.
It seems fitting, however, as we begin to prepare for the events over...
It is Florida's dry season
There is a joke about Florida’s seasons. Florida has 2: a wet season and a dry season. The wet season runs from April-October, and the dry season runs from November-March. They are just that. It rains every day during the wet season and not at all during the dry season.
So imagine our surprise when God winked and threw us a couple rainbows and some rain in the last several days.
Sunday...
My words tonight are not eloquent, they are just...
Wednesday we went to Disney. We escaped quickly from routine, and had some kind people “turn up the magic” for us. And by “turn up the magic”, I mean, we felt like we were the only people in a crowded park! It was such a beautiful day that we have declared November 7th an official Downing holiday: Disney Day. Jeff and I don’t celebrate or get caught up in the...
Today
All the way home from the hospital today, I wondered and thought,”How will I say it?”
How will I tell you about our day and what we have learned about our daughter, our family and our future.
I got home and continued to ask myself over and over.
Then, it rained. Well, it didn’t just rain, it poured on my street; for exactly 3 minutes. It wasn’t even long enough to completely soak the...
It's how the Earth goes around
I found my Christmas cookbook. It’s on top of my refrigerator. I wasn’t looking for it, mind you, but I found it anyway.
A week ago, I found myself seated in a smelly taxi with ripped vinyl seats and a dirty floor. It was a dreary day, with grey clouds filling the sky, and no sun shining. As we made our way from the east side of Manhattan to the west side, and eventually out to...
October 2012
7 posts
Today, Caitlin is the one cheering!
I have cried a lot lately. I’ve been sad, and angry, and worried, and scared. So, I’ve cried to let go of some of that emotion.
Today, however, I cheered.
Because when you go to a cheer competition, you cheer.
Today Courtney and her Jr. PeeWee cheer team left it all on the mat at their cheer competition. They set out early this morning to take on all the Mid Florida cheer...
What comes next?
Many of you have asked, via email, text or voice, “How is Caitlin? What comes next?”
I will tell you that after a tormenting week I am able to finally answer those questions, but not without some emotion.
We have consulted with professionals, reviewed research we have read dozens of times already, submerged ourselves in reports and medical records, and debated and discussed between...
Cheering for Caitlin...and Cole?
I have spoken frequently of our community. I have often recognized the Hagerty Huskies Pop Warner Association, because of the ‘family’ they are to us.
Several weeks ago, I witnessed that Pop Warner family grow. It was a rival game against the Lake Howell Pop Warner teams. Entering their field, it was impossible to miss the florescent pink posters that exclaimed “Rooting for the...
7:45am phone call...really?
Our mornings are typically hectic.
That may be an understatement.
Typically, our mornings are absolutely chaotic.
Aside from my morning run, where I am able to find quiet and peace, and be alone with loud music and my own thoughts, from 6:20 until 8:10 every morning is sheer pandemonium in the Downing household. I know too many of you are nodding your heads right now.
It follows this...
Like Tower of Terror, or Lex Luther...
In the early 80’s, as I was growing up outside Philadelphia in Bucks County, Six Flags/Great Adventure in New Jersey announced an incredible new thrill ride: Freefall. I waited years until I could finally go and experience it. I remember entering the park with my cousins and some of their friends; we raced toward the ride that promised to excite.
It did not disappoint. It was an...
It's a Start...
I have started this entry no less than 4 times since Sunday afternoon. Each time I try, I look back at the words I’ve put on paper and it reminds me of Seinfeld, when Elaine tries to dance. It is uncoordinated, doesn’t have any rhythm or balance, and is basically a total disaster to look at.
Today, after some emails, and technical problems, I am hoping I have found what I need to at...
September 2012
8 posts
A Little Red Balloon
Last Thursday evening, a mother’s worst fears came true.
Last Thursday evening, in Southern Florida, a mother lost her daughter, a young woman lost her best friend, and a ballet company lost a beautiful dancer…
Last Thursday evening, in Central Florida, we released balloons into the bright blue sky; “prayers to heaven” we called them…
At the (very) last minute, I...
It's Time, for a New Beginning
“As an outsider looking in, I feel helpless. I know the past eight months has been beyond difficult for you and last Friday’s news was devastating to hear. The pain, grief and sadness you feel is also felt by all of us who are cheering for sweet Caitlin.”
This was a small part of an email I received from a good friend 2 weeks ago. I have re-read her entire email many times, and this paragraph...
Something about an insect that sneezes...
A football player climbs out of the car and heads to the practice field. He is somewhere between the age of 6 and 13. His cleats are scraped and weathered, laced, but not yet tied. The knees in his practice pants are brown from ground in dirt that can’t be washed out anymore. His shoulders are broad, as his practice jersey is stretched across his shoulder pads. He carries a water jug with ice and...
From Your Heart, to Mine
For a long time now, I have wanted to ask for help. (Yes, you read correctly, I’m asking for help.) I have, in true ‘Denise-fashion’, struggled with asking, for fear of seeming selfish.
But tonight, on the way to practices, with the sun on one side of the sky, and dark black rain on the other, all 4 of my children sat in the back seat and sang “This Little Light of...
It was at the Copacabana...really, it was
It is March 2012. I am unsure of the weather conditions outside. I don’t know what the date or day of the week is. I am unaware of what I am wearing, or where I am. But, I remember the conversation clearly, and accurately, as if I’ve played it back on CD every day since then.
It was with a good friend, and it was (of course) through many tears; not just mine, but hers too. She told me...
I have a correction....
I need to tell you about a little boy. His name is Jordan. Jordan shares something in common with Caitlin and 248 other children. They were all diagnosed with DIPG this year.
But, Jordan and Caitlin share something else, that no one else can proclaim they are a part of.
Caitlin and Jordan were both participants in the same clinical trial at Sloan Kettering, under Dr. Mark Souweidane, Dr. Kim...
It's a boxing ring
As a child, I fought with my sister. Typical of siblings close in age, we bickered, argued and complained about and to one another. And, many times those verbal wars turned physical. Even though we were comparable in height and weight, Deidre was always stronger than I was. About 3 minutes after my mother would walk out the door to work, it would start; typically I was the first to throw the...
Swords and Shields for Daytime Demons
It is early Wednesday morning. (It’s so early, some people would call it ‘very late’ at night.) Caitlin and I are in Orlando International Airport. She is wrapped in a soft blankie, shoes kicked off, eating a bagel and strawberries. I’ve got my fingers wrapped around a little slice of heaven (a latte from Starbucks) and we are chatting easily as I alternate between typing...
August 2012
11 posts
A little bit of silver, and a little bit of gold
They cannot vote. Most cannot drive. Their opinions are not typically taken seriously. They are told what to do, and expected to follow directions. The younger ones cannot cross the street by themselves. They cannot get in to a rated R movie.
But, they CAN, and all too often DO get cancer.
They are children. In 2012, 26,000 parents will hear the words “your child has cancer.” It is...
How many ice cream sandwiches are TOO many?
Last night, Jeff worked late; that means he closed the doors to the office at 8:00pm. He finished seeing patients at the end of a long, busy day. He was tired, I could tell by the tone of a text he sent me during the evening.
Jeff working late means a few things for the rest of us…
It means anything that has to take place after school is typically on my watch. I sometimes use the term...
My Foot in My Mouth...
I have a confession.
A few weeks (maybe 3?) after we received Caitlin’s diagnosis, I approached a friend. It is a friendship that is often playfully sarcastic, but genuine at its root. I walked up beside him while at a small social gathering of sorts. He put his arm around me, looked at me, and returned his attention back to whatever was happening in front of us. We both stared straight...
From the center of my heart to...?
“Mom, do you have a map I can borrow?”
That question came from one of my children. “A map? What do you need a map for?” was my questioning response.
“I want to help you…”
“Help me? How?”
“Find that place you were talking about.”
“What place was that?”
“Where those two places meet. Um, I think you said...
Rainbows and Witches
We started our day Tuesday at the hospital. The morning bled into the afternoon as we went about what has become ‘routine’ to us. Similar to getting up, showering, getting dressed, eating breakfast and brushing teeth; Caitlin checked in, got her arm band, had a tearful blood draw, waited, visited with some physicians and nurse practitioners, spoke to the child life specialist, grabbed...
My thoughts this morning
Tonight, I came back to the hotel room after an incredible evening with my daughters, and right after Caitlin took her medicine, the girls giggled as they jumped into pajamas, brushed their teeth and climbed into bed.
I started to make some notes and write things down, excited about the next blog entry I wanted to share.
Now, it is 3:40 on Wednesday morning. I sit on the floor of my hotel...
Time for Cleats and Bows...and...
When I was a child, I tried to play softball. I was a disaster; couldn’t hit, couldn’t throw and couldn’t catch. My parents still tell the story that every time I got up to bat the other parents on the team let out a groan that they made no effort to hide.
My mother took a new approach (thank goodness) and took me to dance lessons and signed me up to participate in Pop Warner....
