Cheering For Caitlin

The Middle of May

May is two-thirds over.

Honestly, the hardest parts of May are over.

Like a heavy weight that sits on a gym floor, that has never been picked up; the days in the first 2 parts of this month loomed with a threatening and heavy sense. We didn’t know what kind of strength we would need to lift them off the floor, to our chest, or over our heads. 

With the correct combination of equipment, training, music and coaching, that weight can be pulled up off the floor with some effort. With some strain, and some ache, it can be curled to the chest. And finally, with some burning and throbbing, it can be hauled over the head in a swift, successful movement.

Muscles may scream in agony in the following few days.

But then, there is recovery. And the next time, it’s a trace easier; because it isn’t the first time anymore.

I walked into the first day of this month armed with my own set of “equipment.” I had planned, expected and organized myself. I was wrapped with love, support and strength, by friends and family.

Among the last few weeks, I have found myself, and my family, showered with many blessings. Those treasured gifts have come in many forms. Texts, phone calls, emails and cards have filled my phones and mailboxes. Gifts and flowers filled my doorstep and kitchen counter. Hugs and tugs and touches came in various forms from gentle to strong, from both little ones with tiny arms that automatically wrap around my neck, and from those who are taller than I am, with arms that automatically pull tight as if transferring strength to me. Moments have been filled with laughter and tears, with stories, memories and images, with chatter and comfortable silence. 

You all have adorned gray ribbons and purple buttons. You have embraced the drab color that signifies an important show of support. Yearbooks have dedicated beautiful pages to Caitlin. My mothers brought an incredible Mother’s Day gift to my table to celebrate the day. Big tough lacrosse players have scored goals for Caitlin. 

Last Thursday, I went to see a ‘yard, that had been chalked. Lawton Chiles Middle School teachers and coaches chalked (it’s just like it sounds) part of their enormous courtyard. It’s a traditional send-off to the 8th grade students. Dedicated to loved ones who have died, Caitlin was a large part of their theme this year. Rendered speechless at the site, I cried, and laughed at the colorful, artistic representation of a good luck wish to a group of students headed to high school; and a huge display of love aimed partly at my family.

Friday we started Caitlin’s birthday at her preschool. Starchild Academy generously dedicated their back courtyard to Caitlin.It was an unbelievable honor and tribute. With a gathering of friends, and a impeccable ‘Caitlin-like’ display, we cried tears filled with gratitude, love and humility at the special gift given in memory of Caitlin. We smiled, our hearts so full from the kindness and hard work put in to making the ceremony and dedication possible, and perfect. Thank you all so much.

Following the dedication, we each worked our way through the day.

And Saturday morning we woke up. Yes, we did. The world had not stopped turning. I hand’t disappeared into a cloud of dust. As I walked through the kitchen, I even smiled.

“That’s a nice sight,” said Jeff as he elbowed Courtney.

I filled with tears, while keeping that smile Here’s the explanation I gave them:

This morning, as I reflect back on yesterday and the days from the past many weeks, I’m reminded of a popular Dr. Seuss quote. For a while I’ve existed on one side of that quote, hesitant to move to the other side. Today, I feel like I’ve finally switched.

“Don’t cry because it’s over, smile because it happened.” I’m so grateful Caitlin happened.

I smiled the rest of the weekend. I found myself laughing and hugging, swinging with friends in the middle of the day until late at night, playing wiffle ball in the back yard, cuddling and watching Lion King with the kids again, rejoicing in winks given to a good friend and her family, and watching my kids play with those that have been with them since the day they were each born as they splashed and laughed and ‘accidentally’ got a cast soaked.

And this morning, I woke to my favorite part of this story.

Last night, for the first time…ever…

I had a dream about my angel. She smiled, gave me a surprise kiss to wake me up, and left quickly with a giggle and a gentle wave as she said,”See mama? I’m ok. You’re ok too.”

All my love,d 

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 sad, or the bad. This month my heart holds so much of the sad and the bad….

I got a text from a friend tonight. After wallowing around in a little bit of my own self-pity, a reply text said,” Smile more. The next 7 days will come whether you smile or not.” The text went on to say my pain must certainly be unbearably hard,  but if my face smiled, maybe my brain would start to believe it.

I fought back with the facts of the coming week: Saturday is the 11th- 6 months (Good God! 6 months?!) since Caitlin died in our arms, Sunday is Mother’s Day (I know…I’m getting there….) and Friday is the 17th, Caitlin would have turned 6 years old.

That’s a lot in just one week. That’s a lot, and I thought I was ready for it all to get here.

Honestly? I’m not. I’ve written several different posts since my last entry. I haven’t posted a single one of them. Each one is negative, full of self-pity and speaks of the dragons that seem to chase me, not only in the dark of night but also in the light of the day.

I am sad. 

I said it. I mean it.

 I am sad. 

I cry, probably too much. I don’t want to go to sleep, because I have nightmares. I don’t want to run because it’s absolute torture right now (but I do it anyway because it’s ‘good for me’), and sometimes I don’t want to leave my house, but I do.

A new feeling has settled in; a feeling of being real. The past week has been as hard as the week Caitlin died. I don’t get it; I can’t explain it. I don’t know why, but I wish I could figure it out. It hurts; and it is sad. 

I want to stand on my roof and look up to the heavens and scream “GIVE HER BACK! NOW!!!”

I want my daughter back. I want my children to have their sister, our parents to have their granddaughter, our community to have their Caitlin. I want her back.

But, we all know, that isn’t going to happen.

“Society” thinks this should be getting easier, that’s what the books all say.

The books also tell me this; that in the 6 months following the death of a loved one the shock begins to wear off, the second year becomes harder than the first (really? REALLY!), and that loneliness settles in.

I will do my best. I will smile when I can. I will cry when I need to. I will relish in the delight of hearing Caitlin’s name, or sitting on my back porch swing with a friend under her rainbow. I will be grateful for an unexpected letter.  I will watch Love Actually (again). I will be grateful for incredible friends who never leave my side, and for those who recently arrived. I will forgive those who can’t stay because it is simply ‘too much’.

That text from a friend earlier will continue to remind me of what is most important though;

I will continue to live; when I don’t feel like I can, when I don’t feel like I want to…

I will live, and love, because that is what Caitlin taught me…I hope that is what she helped to teach to you,

That is what Courtney and Cole and Campbell continue to teach me…

To live, and to love…

with all my love tonight, and tomorrow, and all the days after…

and all my hopes that you continue to keep Caitlin’s life alive in the way you live and love your own, d  

Missing this sweet girl, so much…

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 me…Wednesday.

I am not ready for it to be here. Admittedly, my reasons are quite selfish; they begin (and end) with that small, sweet 4 year old. She stood bravely, did what we asked of her, and endured 10+ hours of anesthesia as the first participant in a new clinical trial for a fatal pediatric brain tumor.

Remarkably….or “coincidentally”… she had this surgery on the first day of brain tumor awareness month. We all have our priorities. Which month is it? What special colored ribbon do you adorn to show your support because it has touched you in a way that is lost in words?

Ours used to be February, and the red ribbon, for heart awareness month. Given the statics on both men and women, the ‘underfunding’ the American Heart Association receives, and the history of the Pflaumer men, we have chosen to donate to this cause in the past. This past February was no different. We donated the same amount we do every year, and participated in the same events.

May is bigger than February for us now.

In two ways…

First, May will likely hold our hearts forever. May 1st- Caitlin’s surgery and all the value and importance it holds. May 11th will be 6 months since she died. (I hate that I am even capable of making that statement true about my own child.) May 17th is her birthday. Mother’s Day is in May, every year.

And, May is Brain Tumor Awareness Month.

I’m going to skip (part of) the emotional and personal parts of May and tell you this instead:

~ brain tumors are one of the deadliest forms of childhood cancer

~ there are more than 100 different types of brain tumors

~ new cases of pediatric brain tumors approximated to take place in 2013 are 4,671

~ DIPG has made no changes in cure/survival rates in more than 40 years

~ approximately 1,545 children will die from cancer this year

(per the Pediatric Brain Tumor Foundation)

It is easy to complete a google search and see the numbers of survival rates increase exponentially as funding increases for a particular disease. So, it shouldn’t be surprising or disappointing when we look at the small amount of funding for DIPG research, or pediatric brain tumor research, and see that no progress has been made in finding a cure.

“If a serial killer was running around lose, killing 250 innocent children a year, wouldn’t we spare NO expense to capture this killer? Call that serial killer “diffuse intrinsic pontine glioma” and suddenly, very few people seem to care.”

Those are not my words. I’m not certain who they belong to; they were passed anonymously from one parent to a marketing executive and back to me. But they are true; some of the truest I’ve ever heard.

May 1st is Wednesday. It’s only another day until 525,600 minutes is here, and May begins.

I have made more gray ribbons. There are some in my car, in my purse and in the craft room.  Ask me, and you can have one. My gray bracelet won’t leave my wrist. I will wear gray every day in the month of May, because someone…anyone…everyone…needs to remember it is Brain Tumor Awareness month. That’s MY priority, that’s MY color ribbon…

anyone want to join me? 

all my love, d

ok- I confess: I will wear gray every day in the month of May, with the exception of May 1st. On May 1st, I will wear pink and purple. They were Caitlin’s favorite colors, and I remember with a smile, the pictures that flooded my phone only one year ago as she was in surgery. Pictures of all of you in those bright colors, loved by little girls. They were amazing- you all were amazing for wearing and sharing. May 1st, I will remember my brave girl, and the courage she displayed. 

May 1st, I will wear pink and purple.   

And the rest of May, I will wear gray.

(in the last 2 weeks I have received 3 letters from you all. each one of those letters began with “i have no right to be sending you this….”

Do you realize, I have NO RIGHT to be asking for them? It is selfish of me. But i am continuing to ask anyway. If she touched you, or moved you, or made you look at life differently, please tell me. If she shared a smile, or a laugh, or a story, or a moment, please tell me. I am desperate to hold on to as much of her as I can. People have repeatedly come to me over the last few months with stories and impacts that I knew nothing about. Please take just a minute and tell me… please….you have every ‘right’.)

INVINCIBLE: incapable of being conquered or defeated

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 up seeing it, and couldn’t resist the selfish temptation to ask the only question that screamed inside my head…

“Did she have surgery with Dr. Mark? The CED clinical trial at Memorial Sloan Kettering Cancer Center?”

The mother responded quickly. It was the same. “My daughter was the first child to participate in that study” was my response back. She asked how Caitlin is doing now…

As I struggled with a sensitive, positive and supportive message to reply, my thoughts drifted back to May1, 2012; almost 1 year ago. 

May 1st…

the first day of brain tumor awareness month…

Caitlin’s surgery…

hours and hours waiting in a strange lobby, far away from those we loved…

the words that finally came more than 12 hours later….”It went perfectly”…

pink and purple worn by anyone who knew Caitlin’s name…

I saved one of the many texts I received that day. It was from a good friend and said,”If Oviedo was an electrical grid with all the love, hope and prayers being sent and felt this morning, I know you would be able to see it from space!”

One year ago. So much can change in a YEAR.

These thoughts ran through my mind as I made beds this morning. Campbell has been sleeping in Caitlin’s bed lately. Every night, she lifts the shade to the window, finds a star and blows a kiss or two. She whispers “goodnight and I love you Yaya” and then says to me,” I’m going to sleep in Yaya’s bed tonight. So she can come see me. Yaya would share, right?” Three days ago, I washed the sheets and remade the bed. This morning, as I quickly tugged and tucked the sheets into place, I found this wedged between the mattress and the headboard. A silly little coincidence that brought me to tears in a nanosecond.

(keep reading after the picture)

One year ago. SO MUCH can change in a year.

I am in a different place than I was a year ago. A year ago I was filled with hope in finding a cure for Caitlin, despite the fears of brain surgery and the knowledge of participation and outcome measures in a Phase 1 clinical trial. This year, as May 1st approaches, I am still filled with hope; hope that we continue to move forward on our journey to healing and peace. 

So far, the path has often been rocky, and uphill. The conditions have been treacherous at times, and mild in other times. Sometimes I have brought along the necessary equipment I need to travel through challenging terrain and bad weather. Sometimes, I‘m dressed for a summer day and encounter a snowstorm. Sometimes I feel like I’m climbing a mountain in stilettos. 

At times, when my feet ache, or I have become too tired, I am grateful for family and friends who offer to hold my hand. When I could no longer carry the weight of my pack, or when my heart has simply been too much for me to hold, you have not watched without notice while I drag it clumsily behind me. Instead, you generously offered to carry it for me and add it to the weight of your own pack. Some of you have even carried me when the threat to ‘go back’ became overwhelming. 

I am guilty of allowing too many to have carried too much of that weight for too long. It has been hard to watch someone burn out, and then be unable to walk any further with me. I shouldn’t have asked you to hold it; I was selfish and desperate in my plea for help. You were kind in being ‘there’ for me. Please know I am so sorry when I have taken advantage of you. Thank you to all of you who have done things big and small to help me move in a forward motion.

I won’t stop. I will not give up and go back. I won’t  abandon the hope and belief I have in the healing process. I know some days I will be able to run during this journey. Some days I will walk. Some days I will only crawl. And some days, I may need to stop and rest until I can find the momentum to advance again. But I promise I will not concede, and I will not go backwards.

Often I do not feel strong, or graceful as I travel this road. And I know that I am not invincible along this way…

all my love, d

I am not invincible, but I have found what is. Invincible is a group of 20 unbelievable athletes who travel to Disney’s Wide World of Sports this weekend with 4 amazing coaches to represent a great gym. 

One year ago. So much can CHANGE in a year.

Since May1st of last year, this team has struggled, worked, and fought their way to the top, earning a partially paid bid and the right to bypass the preliminary rounds of the Worlds Cheerleading Competition and go directly to the semi-final round. I can think of nothing more suitable to define the word ‘invincible’ than these 24 people. Good luck Double Down Athletics Senior Level 5 Invincible team. You have proven yourself worthy of being called Invincible; own that, because it’s all yours. Can’t wait to cheer for you this Sunday!! xoxo

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 of One Big Happy Family. She and Courtney had even chosen what dress Caitlin would wear when the musical arrived at the end of the school year; they chose the same pretty red dress Courtney had worn when she performed in her kindergarten rendition.

You can guess by the vague timeline that we did not get to watch Caitlin participate in the simple choreographed dances and hear her sing the lyrics to songs we too, had memorized long ago. But because of some special and thoughtful teachers, and excited 5 year olds, Caitlin did reside on stage with the rest of the kindergarten classes through the show. An easel held a picture of Caitlin, dressed in the red dress she and Courtney had chosen almost 2 years ago. 

It was, as so many things are lately, both incredibly touching and beautiful, and heart breaking and sad. 

That was the very first time I saw it. No, not One Big Happy Family; I told you it’s performed every year…it was something else.

In the weeks since then, I have found it again and again. I have found it in bold, bright, clearly visible scenarios. I have found it in the whispers of the shadows. I have found it most often, when I wasn’t looking for it.

Caitlin has taught me (another) lesson. It is one that she has taught in a subtle, quiet way. She has given it as a gift, and has done it in the same way she taught me (us) when she was alive.

She has not taken me by the hand and pulled me through this particular lesson of life. She did not thump me on the side of my head to wake me up, or scream at me to pay attention. In her own gentle, silent and unassuming nature, Caitlin has spoken loudly.

You would only have to go back a few blog entries to begin to understand the importance of a rainbow. Wait; not the importance of a rainbow, everyone understands that beauty. But if you read back you would understand why Caitlin has been allowed to adopt them as a symbol.

Rainbows are really quite scientific, though. It is a phenomenon that is both meteorological and optical. It is simply a reflection of light in water drops within the Earth’s atmosphere. This causes a spectrum of light that shows up in the sky as an arc.

Simple enough. Easy to comprehend. When the necessary components join forces, we get a rainbow. We could get further involved in the science and definitions a rainbow entails; refracted vs. reflected, dispersion, angels and index. But we’ll stop short of those, and agree that rainbows are scientifically no more exciting than fog, or hail, or lightening. 

So the science is easy; water, sun and looking at the right place at the right time.

There is another dimension to a rainbow, though, that hail and lightening and fog don’t have; a spiritual component that most people don’t deny.

I have read about explanations that span the best known definitions to trivial or incidental. Most commonly, a rainbow is assumed to be a promise from God given to Noah, or a connection that joins Heaven and Earth. I have read others that attribute a rainbow as a source or sign of fertility, wealth, healing or energy through certain colored beams.

Caitlin became united with rainbow sightings quickly in the days that followed her diagnosis. As she moved further through the year, rainbows were visible frequently, even regularly. Many people turned to me to say,” I’ve seen more rainbows in the last month than I’ve seen in my entire life.” In the weeks approaching Caitlin’s death the sky was painted with a rainbow almost every day. And, well, you all know what we saw in the sky the day she left, and the days and weeks that followed…

Since then, however, rainbow sightings have dropped off, rapidly.  The components ripe for making rainbows still fill the sky all at the same time, but I can’t find a rainbow. I’m fairly certain my neighbors imagine I’m a little nutty. Thinking I should be guaranteed a rainbow given the looks of the sky, I have wandered from the front yard to the back, and around to the front again. I will stand in the driveway or backyard searching the sky until I’m dizzy, but no rainbow is to be had.

Slowly, in the last few weeks, it has dawned on me, through a combination of reading the book I’m working to put together, and watching myself and others carefully as we have glided through the days, weeks, moments.

It became ultimately clearer this weekend, when I opened my eyes a little wider. 

It started with a very old post here. It was from last February. It was titled ROY G BIV, and it was about rainbows, but not the traditional kind.

Today the sky had the ideal makings for a rainbow. I was outside, with friends. We searched, but didn’t see a rainbow. We held up our hands in question. HOW was it possible to have a sky like this and no rainbow? The storms blew in, with a pouring rain. One by one, our children took off from under tents to play in the downpour. Puddles turned into mini lakes quickly. Shoes and shirts were discarded. And then, a group of mothers decided the kids shouldn’t have all the fun. We slopped and slid, ran and tackled “our” children. We laughed, and giggled and squealed in absolute perfect harmony as we played in mud puddles. (I didn’t even take off that delicate rainbow scarf; because life is about living, right?) As I nearly collided with a friend, another came around and threatened to wipe us out. Suddenly, there were tears.

But not, a rainbow.

Well, not a traditional rainbow.

We haven’t seen them in the sky, but they are still there. Caitlin has been trying to get me to see the rainbows that take place regularly and daily,  just like in the weeks before she died. But she has been trying to tell me I won’t find them looking up. Instead, I just need to look a little closer at my everyday.

I will find them in the mud puddles, and the sound of laughter. I can see them in the eyes of a friend who only knows how to love unconditionally. They show up in spontaneous conversations on back porch swings under Christmas lights and long group text messages that carry on over an entire weekend. Rainbows are written in the words of an 8th grader who is as beautiful on the inside as she is on the outside. Rainbows show up moments when no words are needed, and in hugs when the right words can’t be found. Rainbows are the smiles in a child or the friends that show up because you called (or sometimes, because you didn’t call; they just ‘knew’.) They are family. Rainbows can be a cheerleader’s bow,a new nickname, a song on the radio, a gentle touch, a kind word or the sharing of a vulnerability. Rainbows can be admitting, after too long, the guilt that you have carried that shouldn’t have been yours to own. 

They’re here, around us, always. We just have to be willing to open our eyes and find where that metaphorical water bends the light from our own sun. There, we’ll make our own rainbows.

I stopped some friends today. I asked them to remind me of these rainbows in the moments when I can’t find my sun, and only see the rain. I get lost in that rain sometimes. I can’t always find my way back to the shining light and rainbows. I’ve asked that they help me find my way, and hold me close until I remember how to make those arcs of spectrum light.

The Friday of One Big Happy Family claimed a sky with bright light, and dark black clouds that dropped light beads of rain from the sky. Certain Caitlin would paint the sky, I sat outside the ‘cafe-torium’ and craned my head one way and then the other to find it. I couldn’t. I cried and cried, thinking maybe rainbows weren’t as real as I thought (or hoped) they were.

It took too long, but I know now I did see a rainbow that Friday. It was one of the biggest rainbows ever. 

It was inside, on stage at Partin Elementary. It was in the voices and on the faces of Caitlin’s kindergarten classmates, teachers and staff. It was the perfect rainbow, made of the most perfect elements.

with love, today and always, d

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 shake it up, and maybe turn it upside down.

This post comes from a merging of many attempts to write a letter and speak about something important to me. It is a colliding of talking to a few friends, old ideas of mine that got a fresh vantage point, and (yes, I admit) some influence from social media and network television.

I wrote this letter.

The bombings that occurred at the Boston Marathon are a tragedy. 

It’s that simple. One sentence, one statement; a horrific, tragic event that is often difficult to wrap our minds around in an attempt to understand. It is more difficult to explain it to the sensitive side of our hearts and souls.

In an effort to make sense of the unexplainable and incomprehensible, people reach for their comfort zones to escape, question and attempt to find an answer or rationale. Specifically, social media has become a popular and powerful method of all of the above. So it was no surprise to see Facebook light up like a Christmas tree yesterday in the aftermath of a fearful and confusing attack against unsuspecting and vulnerable people.

I recognized some of my own thoughts in the black print on my computer screen, and later in the words spoken as I watched my son’s baseball game. The sentiments echoed over and over were often,” What is this world coming to?”

I wanted to agree. I wanted to get frustrated at the world too, for letting us down. I wanted to get angry that everyone has gone bad.

But that’s just not possible.

Typically, the first bullet points on the news are those of criminal or harmful activity. We listen as the accounts of horror and terror are defined and described over and over.

But, then, there was another Facebook post that grabbed my attention. It was a quote from Fred Rogers, about looking for the helpers in a disaster situation, because there are always so many helpers. That was so true yesterday in Boston; in the moments, hours and day(s) following the undefinable.

The “world” is like that too; so many helpers.

I know, I’ve had the absolute blessing of being touched by so many of them, firsthand.

I too, suffered the unimaginable. I am living through the nightmares. I am a recipient of something that brings about so much pain and confusion; it is unable to be explained.

Our daughter was diagnosed with an incurable brain tumor in January 2012. We searched and sought. We fought back. We researched and read. We attempted FDA approved clinical trials. We traveled. We prayed. We begged. We hoped and we believed.

Caitlin died November 2012, only 10 months after receiving her diagnosis.

I am angry and confused. But it would be unfair to displace that anger toward “the world.” Because, if people could see the good in this world, they would be unable to say the “world has gone bad.” 

It started in a tiny little community. A town called Oviedo, Florida. 

We were a normal family. My husband worked, I took care of our home and 4 children. The kids were all involved in school and sports and activities. We were nothing extraordinary. We were nothing special. We took care of ourselves, and extended a helping hand when others were in need. But I assure you, we have not moved any mountains.

Following that day last January though, people moved mountains for us. It is impossible to explain the care and support and love that came from our tiny little community. What started with family and friends and teachers in our small town outside Orlando grew quickly and spread with rapid speed to others in the central Florida area, and then up the East coast, and finally to all 50 states and more than 30 countries. People cared.

Why?

Because most people are good.

I know, I’ve experienced it first hand.

I wish, that we could tell our story. Not to detract from the Boston tragedy, but instead, to help share the absolute good in people. We have been so blessed by the good.

Sincerely, 

Denise Downing

I am sending it out; to the major television networks, and news media. I doubt I will get any response, but I feel as though I have to try.

And if no response comes, that’s okay.

I’m going to continue to look for the good, even when my heart wants to feel so bad.

I will celebrate something each day; because every day brings some good with it.

I will love my family. I will treasure friends who have been around for years; I will be grateful that they have not left and continue to give me strength even when I am too weak to ask for it. I will watch the blessing of a new baby being brought into this world and the beauty in my friend’s face when she talks about having a child. I will treasure and nurture new friendships and the blessings they add to my life. I will be thankful someone took a chance and reached out. I will smile at a rainbow, or the new fuzzy baby cranes that mean spring has arrived. I will cherish a daughter that struggles to be inactive regardless of the cast on her leg, and another daughter who screams when she is mad, but then asks to hold my hand so she knows I’m not upset with her anymore. I will say thank you to a husband who works hard, and finds patience when mine have run out. I will continue to stand in awe when my son shares his thoughts and feelings on a topic I didn’t even think he understood or cared about. 

And when the hurt and the pain and the heartache and the anguish threaten to force me to my knees, or render me a sobbing, crumbled fool in public…

Well, I know there will be someone who will wrap their arms around me, hold me until I find my strength again, and still not let go.

Because there IS so much good in this world.

I hope someday I can give back some good to the world too. Until then, thank you for continuing to shower my family in a rainstorm of good.

All my love, d

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, or close to my children’s sticky hands. 

I wear that scarf almost every day now.

It has taken me some time to write this post. 

I am trying to find my way. I have spent time reading books, looking on the internet, searching my heart and my mind to find what it is we should be doing. Each book, article, website and newsletter I find repeats the same theme over and over. “You must find your new normal.” It almost became a comforting rhythm, like the way ocean waves barrel in to the beach and then silently flow back to the deep.  I am looking for that place called ‘new normal.’ 

“New Normal”

It sounds like a location that one would find easily if you just opened the map. You should be able to google it and come up with its coordinates, right? It should just be that easy. 

I have talked about new normal. I have thought about new normal. I started back when Caitlin was still alive. It’s a phrase used often, by many, for numerous reasons. I’ve seen it used following the birth of a baby, a divorce, a vacation, a child’s vaccinations, and following the death of a loved one. I understand the concept; settling back into life following a drastic change. It sounds appropriate enough. It really is not something that should have caused me so much turmoil over the past several weeks.

When I write, I try to be sure to include the positive ways I view life, and all its fragility. Overall, I do try to maintain that positive attitude, but each day I find myself confronted with moments when the reality of a debilitating and cruel blow that has been thrown to me. Some days the sadness is like walking a large dog on a leash for the first time. The dog tugs and pulls at the leash, almost choking itself. The beloved pet’s owner, in an attempt to control the dog, pulls back on the leash, tries to command and train and teach. Sometimes, the dog ends up trying to recover by gasping for deep breaths. Sometimes, the owner is thrown off balance and pulled quickly and unexpectedly.

Some days, that’s my grief. It throws me off, challenges me when I try to get it under control, and knocks me off my feet when I am unaware. In the moments when I can’t contain the tears, or hide my pain. Like the owner who tries desperately to get their canine to heel, i search for a healing place.

When I couldn’t get ‘new normal’ to sound “right.” I began reading, and searching, and wondering. It finally dawned on me why I found it unsettling to be calling this next step new normal. It doesn’t make sense because it isn’t a beach day. The ocean doesn’t get to roll in and fade out. Instead, it’s more like a hurricane day. It’s a Cat 5, showing no mercy. When it finally moves on, the beach is not the same. It is forever changed. 

Let’s define normal. Webster’s defines it as conforming to a type, standard or pattern; occurring naturally; average or common; ordinary or routine or run of the mill. 

It’s probably normal to confront your child’s life.

It’s absolutely not normal to confront your child’s death. 

It isn’t normal to continue to reach for 6 plates when you set the table, or panic because you only counted 3 heads and can’t remember where the 4th child is. It isn’t standard to want to tell your child’s story to every parent of every 5 year old you see in public. It is not usual to be reduced to nothing when your 10 year old changes the radio because she can’t listen to a Maroon 5 song when she knows her mother will cry, or when your 3 year old asks to hold your hand from the back seat of the car because she’s singing This Little Light of Mine and misses her sister. It’s not right to have one bed that never needs to be made because it isn’t ever slept in. It’s not common. It’s not routine. It’s not customary.

And, really, should it be?

Here is my take on new normal. I won’t go there. I am not going to find the path that leads to new normal. I will walk toward healing. I will search for the trail that takes me to a place that is gentle to my heart.

It will never feel normal to wake up without Caitlin. 

It never, ever will.

My final thought on not getting to new normal? Normal begs to be taken for granted. By its own definition it is nothing more than standard, unexceptional and unremarkable. Anything that is average or usual is passed over and passed by. I had normal once before. It was when I took too much for granted. When I thought children always outlived their parents. When I thought I had a lifetime to take the time to appreciate the beauty in simple things or to find the exceptional in the everyday.

I won’t find a new normal, because I will never again allow any part of my life to be taken for granted, or go unnoticed,

because life shouldn’t be normal. Life should be extraordinary.

That’s how I’m going to live it; with happy and sad, with light and dark, with sunshine and rain, with smiles and tears.

And, with an appreciation that doesn’t ever come with ‘normal.’

That beautiful handmade, delicate treasure I wear around my neck daily has never been inside my bedroom. It hasn’t gone near the closet or a drawer, and it won’t. It hangs on a hook, close to the garage door. That way, it’s always close at hand and ready to be looped around my neck over draped over my shoulders. Only that way, does it get appreciated.

all my love, d

To Spank or Not Spank: Really, that’s not the question…

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 take. I ask only, that if you read on, that you don’t stop until you reach the end; because without knowing how this one ends, well, it just wouldn’t be right. If you start it, stick with it and see it through, please.

Before we had children, Jeff and I agreed not to spank as a form of discipline. 

I’m not judging, criticizing, condemning or preaching; I’m simply stating our choice for our children with regards to rearing them.

My parents spanked. (They spanked some of us more than others…but it was distributed evenly when based on behaviors deserving of punishment. Of course, that would mean you’d have to come up with some crazy calculus formula to negate the error given to the obvious golden boy of the family…) Jeff’s mother and grandparents spanked too (but rarely because he was a good boy.)

Our choices today make my father cringe at the words “time out” (which, for the record, we don’t really use.) We do however, find what our kids love most, and when they misbehave or break our rules they get punished through the loss of these treasures. That is where the generations cross; parents have to punish when the need arises.

Punishment

And there, is where this entry suddenly and starkly deepens. I have struggled for the last 14 months with an extremely guilty and haunting apprehension. Since the moment Caitlin was diagnosed, I have thought her diagnosis, and the prognosis that accompanied it was mine to bare responsibility for. I have kept it a secret, like a rare gem that shines brightly all alone in a dark, tightly sealed little box. 

As the weeks wore on after that fate changing Friday night, the walls surrounding that guarded secret began to crumble. In the past 8 or 9 months I have ventured to tell only a very few people, when I was at my weakest moments, of my certain knowledge of what made Caitlin sick.

Even now, as I type, the tears fall quickly and without end. The shame is excruciating. And it is SO SELFISH! The selfish part is likely the other half of the reason I haven’t talked about it. It’s selfish to believe in my heart that I would be important enough to warrant God’s attention to create such punishment reigned down on me. But really, to treat His tiny, little, perfect creation with such…. well, such disregard, and so often…I think He finally had enough. So He inflicted a penalty worthy of such an offense.

I said,”Not now” one too many times. A matching bow or tights wasn’t a high priority that deserved placement in the normal morning routine. Cole wouldn’t eat, Courtney fussed about shoes, the baby needed a bottle…Caitlin wasn’t complaining, so directing my attention at her wasn’t deemed necessary. 

I physically shudder to put that in print and admit it.

It continues. Cole and Courtney have practice, and Campbell is cranky, and it is August in Florida at 5pm and its 101 degrees outside, and we’re late. What do you think I did when I tried pulling everyone out of the car and Caitlin wanted us to wait so she could show me that she learned to make a capital letter C that day? It’s the same as a lower case c, only bigger. I smiled politely and tightly, and said,”Not right now.” 

It’s dinnertime and Campbell is screaming, and no one will get up at the table to eat because they are ‘busy.’ Do you know what Caitlin would do? She would quietly wander through the house gently asking each family member to come to the kitchen. She would straighten and re-set the table. Then, she would sit with her hands folded in her lap, waiting, for as long as it took. She wouldn’t complain. She didn’t ask for anything.

The stories go on, and on, and on…One of my favorites is the one I told in a blog entry just before Father’s Day; if you don’t remember, go back and read it. It’s about being fair, and pajamas.

So God got tired of it, right? He probably paced back and forth, stomping the whole time. I’m certain I heard it, but mistook it for thunder during a rain storm. He finally said,”That’s it Downing! You can’t not give her attention because the other 3 seem to need more from you.” So, He decided He would dole out my punishment. Then, in the same way I take away gym time from Courtney or video games from Cole, He took Caitlin from me. And He made sure I had a lot of memories in her final 10 months. Lots of memories so the pain was raw and ripe and real, all the time, every time, for the rest of time.

Please believe me when I tell you, I loved Caitlin tremendously, like each of my children. I never neglected her in an abusive way that would warrant a call to Department of Children and Families, but she never required or demanded or needed what the other children did. It would be unfair to cast the blame on Courtney, Cole or Campbell either, because I made those choices, not her siblings. I decided who I prioritized, who got the first and best of my energy, and who got the leftovers when I was exhausted.

So there it is, the worst and baddest and most shameful secret I have. I have carried it and locked it away for over a year. I have felt so underserving of the incredible things done for my family since January 13th of last year. I brought this on myself, and then you each offered us so much…

One of those few people I admitted my guilt to was Pastor Roberts. He reached out and wrote a kind and supportive email to me, and I lashed back with telling him he didn’t have to worry about me. I understood God had given me eternity, right here…I was in hell, deserving and just with no chance at gaining access to heaven.

He sent me an email back. It offered comfort, and he requested (begged?) me to not allow this evil to take over my thoughts. That’s what evil does; it tries to destroy your faith.

His words helped that guilt and shame settle down to a simmer, and for a while it stayed there. An occasional thought, or guilty sense would bubble up, pop open quickly and dissolve back down into itself without harming much.

Over the last couple of weeks however, I have felt it heat up from a low simmer to a more progressive slow boil. I’ve read and reread that email. I’ve repeated those words to myself, trying to get it to quiet back down. I was headed into his office soon, I told myself.

Last night, at 2:30 in the morning, I sat straight up in bed and realized the heat had been turned off. Actually, the heat is off, and the sauce has gone cold.

This week marked 4 months since Caitlin died. It’s March; April is next and May after that. I’m not sure if I was dreaming about something specific or not; I can’t remember.

But I sat up in the dark, and rapidly had a vivid set of thoughts. It was black outside, and raining; but the clarity in my head didn’t know any of that.

May 11th will be 6 months since Caitlin died; its kind of a marking point, right? It’s half a year.

6 days later, Caitlin would have celebrated her birthday; another significant marking point in that it is her birthday, even MORE significant when you add in that it is the first birthday we will celebrate without her.

And the final significant detail in this story, is that Caitlin would have turned 6.

Some of you think I look a little too hard for signs, or winks, or coincidences. I have plenty of things I would like to see, and never do. I have more questions that need answered than there are grains of sand on the Florida beach. I wish and hope and pray and beg for messages or visits that don’t ever come along.

But sometimes, SOMEtimes, things happen and they look random, but they make sense of something we have wondered about or asked about or questioned. It isn’t when we demand it, or request or require it. It happens just when it’s supposed to.

Caitlin would have turned SIX on the first birthday we celebrate since she died. Her birthday falls SIX days after the SIX month anniversary of her death.

I still claim I am not superstitious. Just the same, I am not a Bible scholar. But, I am aware, very aware of the value or definition the number 666 has been given, either by Christians or Urban Legend. You can choose from among a variety of words; Antichrist, mark of the beast, six hundred threescore and six, Satan…

I believe, that I just found someone more selfish in their desire to take credit for Caitlin’s death than me; it’s that 666 guy. Once the devil came in and intruded, I believe God worked His will around it, and she was given remarkable purpose and task, even while facing that hatred of evil.

But I’m not taking ownership anymore, the devil can have the shame and the guilt I’ve carried for too long. He can take credit for it, and in turn, I will fight my way back to my faith. He may have won this round, when he stole our daughter; but ultimately he loses, because some day, SOME day, when we see her again and hold her again and play with her and love her again, he loses. And on that day, he loses forever; and we will win for the rest of eternity.

I’m still mad, and sad, and angry and confused. Some of that is still directed at God. But  with a different light…

I wasn’t a great mother before Caitlin was diagnosed with a deadly brain tumor. I’m not a great mother now. But I promise I’m reaching every day to be the mother I want to be for my children. And I know, now, I know… that I’m not going to be punished for falling short of those goals when I just can’t seem to reach them.

Thanks for sticking with me tonight. I know you don’t all feel the same way, and I won’t preach to you that you should. It was something that has been locked up, painfully, for a long time. Last night it found some peace. I found some peace; and was able to let go of the shame and guilt, and maybe a little piece of the hurt.

Thank you, for caring, and for reading, and for loving me, still. All my love, d 

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 enormous digital library I have…50,000+ photos….

But it’s an interesting concept; “firsts,” isn’t it? I think, too often, we move through the ‘normal’ and ‘routine’ paying little attention to the firsts. Sometimes, firsts even become part of the routine and normal, the way a sponge just soaks up water; almost without notice. 

We are beginning to take baby steps as we step out from under the umbrella I call “Shock and Numbness.” The anesthesia that has been protecting our hearts and minds is beginning to wear off. I know this, because days are getting harder than any we’ve experienced. That difficulty we wrestle, sometimes individually and sometimes together. I’d prefer a large alligator to climb up out of the lake; most days I’m certain that would be a far easier wrestling match for me to win.

We experienced many ‘firsts’ with our hearts protected in that dazed and blunted state the last 3 1/2 months. I had fooled myself into thinking the reason I handled them “so well” was because I was ready for them. As the frost that has enveloped me for almost 4 months starts to melt away, I find my senses returning to their ‘normal’ level of awareness. First Thanksgiving without Caitlin, and first Christmas; our sadness was tolerable. I thought I was ready, and that’s why we sailed through. I feel as though I’m ready for Caitlin’s first birthday without her. Well, May 17th we’ll find out if I’m primed and equipped…

My recent awakening has me encountering many other first episodes I wasn’t ready for, didn’t anticipate and leave me with more choices of emotion than satellite t.v. offers channels.

The firsts? Well, some make me sad; seeing a Hello Kitty outfit she would have loved, seeing her name etched permanently on her stone at the cemetery, speaking to a friend about their own life and realizing everyone has been dealing with all their own issues while I was locked in my own selfish anguish. 

Some firsts, leave me confused or angry; when I cry uncontrollably even though I try with every ounce of strength to stop the tears because the present moment shouldn’t be about me, my daughter or my pain; but suddenly and embarrassingly, it has become that. The polar opposite can also produce the same emotions, watching a friend cry while telling a touching story about Caitlin, and my own heart breaks as I listen, but I can’t find the tears and later feel like I have to explain my own confusion and embarrassment at the situation.

Other firsts leave my heart full of pride, and happiness; when I am approached by someone who has been touched by Caitlin, even without knowing her. When those of you still struggling to write that letter you promised and didn’t think you could/should write, finally send it to me. The first time someone calls and asks if something can be done in Caitlin’s name or in honor of her. (Thank you Partin Elementary and PTA for the donations you collected at the talent show for Dr. Mark, and his fight against DIPG! Thank you for honoring her with the Terry Sparrow Award this year, and for the beautiful, angelic snow globe. It sits in a window we pass by often, and makes rainbows on the floor.)

Last week, I was terribly sad as the week threatened to transform into the weekend. I struggled with that sadness, wondering what was keeping me anchored down, when we were excited to sail through a busy, fun-filled agenda on our days off. Sunday promised a welcome and much-anticipated visit from some out of town family, and before that we got to celebrate Opening Day of Oviedo Babe Ruth Baseball on Saturday.

Opening Day of Oviedo Babe Ruth Baseball….aha, there it was.

I was stuck in a first; one that came at me, well, forgive the pun, but out of left field.

A year ago, I held Caitlin in my arms as we stood at the opening ceremonies, among hundreds of people. It was a special day. The league of over 900 participants dedicated their entire season to Caitlin. She smiled as Coach Rod lifted her up into his arms. She waved when he introduced her, and then explained her brave fight against a brain tumor with a terminal prognosis. She made her daddy so proud when she adeptly threw out the first pitch and it made it across home plate. 

Then, I cried at the kindness and generosity shown by an incredible community of people.

This past Friday, as I cried the tears I didn’t want to be seen on Saturday, a call from a friend. He asked if he could “just say a few words about Caitlin on Saturday at the opening ceremonies.” 

He called it a few words, but to my sad and aware heart, it was a token of comfort that she was not forgotten. My pain eased. “No big deal, or anything like that,” he ended the conversation. 

The “not big deal” turned into something I still haven’t found words for. Jeff and Cole were on the field with their team, lined up among all the baseball and softball teams. The girls and I melted into the crowd of hundreds. We braced against the cold and wind as we listened to Coach Rod again this year. Feeling like fragile glass, I heard very few of his words, as I waited for my composure to give out and find myself shattered among the bleachers, because I couldn’t hold myself together any longer as I thought about the year before.

Then, I was following unforeseen directives as the girls and I walked onto the field and joined Cole and Jeff next to Coach Rod. Still expecting “just a few words” I held Campbell tightly and joined hands with Jeff as we put our arms around Cole and Courtney who stood between us. I could feel Caitlin’s absence, until…

Coach Rod spoke, and had this brought out.

“Just a few words,” 

and a brick, with the most touching message I’ve ever read, to be placed in the sidewalk of the Oviedo Sports Complex; forever a remembrance of our daughter.

The presentation ended, as a rainbow of balloons floated up into the air. A surprise made possible (and kept VERY secret) by incredible friends.

Some thing that was not a first; again, this year, I cried at the kindness and generosity shown by an incredible community of people.

Thank you, to those who planned it, 

and thanks to those who were there and were a part of that first moment.

And thanks to each of you, for continuing to remember and share ALL the moments.

with love, d

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, and those who can not. We grumble that something is too small, lasts too long, is too far away, or delivered via poor customer service. Sometimes it just feels normal to engage in this behavior. Often, I think we just fall into it easily, and comfortably.

WICKED has made it’s way to Orlando with a traveling Broadway Series troupe. It is no surprise that it has made it’s way to the forefront of my mind; something I encounter daily. Commercials and reviews on television, songs on the radio, Facebook posts of people who hold tickets, and sometimes, personally laden conversations.

Last fall, I promised to take a loved one to see Wicked for her birthday. Through tears, we have decided that may be too painful and we have decided not to go. (I owe her a birthday present!) A text from my mother, “The commercials for Wicked bring tears to my eyes. When I asked Caitlin what her favorite Broadway show was I was surprised to hear her say ‘Wicked.’ She explained ‘because its about friends and friendship.’ I don’t know why I was surprised; that heart was so pure and full of love.” Finally, an email from a friend, that held an attachment; an essay written by her daughter, a teenager. Teenagers stereotypically are among the biggest ‘complainers.’ A group known to be happy among each other, but consistently argue the reasons something is wrong with adults. This teenager, however, defies that stereotype, in her everyday words, actions and this week, in her kind, genuine and heartfelt school-assigned essay. (With her permission, I will print it in my book, on the pages following this post.)

With all the chatter surrounding this astounding Broadway hit, I have been flooded with memories from taking Caitlin and Courtney to see Wicked on Broadway. A few days ago, in a moment of (stupidity?, self-torture?) I played some of the songs.

While ‘For Good’ reminds me of Caitlin, it fills my heart with something else…

People come into our lives for a reason, bringing something we must learn.And we are led to those, who help us most to grow…if we let them,And help them in return. Well, I don’t know if I believe that’s true. But I know I’m who I am today 

Because I knew you…

We each have people who have changed our lives because of their friendship or interactions in our lives. When is the last time we stopped expressing our dissatisfaction long enough to tell those people what they mean to our existence? To our life? To our hearts and happiness? And I mean, REALLY tell them; not a casual thank you, or strong pat on the back, but really told them.

It sounds a little too sweet, like when my kids insist on syrup AND powered sugar on top of their pancakes or waffles. It sounds a little too pure, too altruistic; like Snow White and her unbelievable innocence.

But we don’t know what the next 525,600 minutes will bring to our lives. How will you look back and measure this next year? Daylights? Sunsets? Midnights?

Take some of those moments so dear, and celebrate friends.

It’s time. Trust your instincts. Close your eyes and leap. Defy some gravity;) 

Let someone know, 

that you’ve been changed for the better,

and that because you knew them,

you’ve been changed….

for good.

with love, d 

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 anticipation of a Valentine’s party and exchange at school. You would think today would be exceptionally hard for me…

It hasn’t been though. I wondered why I didn’t get out of bed with dread. I was curious why I haven’t cried yet. I have been puzzled at my ability to laugh genuinely and easily so far today.

I had coffee with a friend, ran an errand and came home. Dark clouds have covered the blue sky since late last night. They will be stuck in the same place all day, and most of tomorrow. They threaten to storm, with heavy rains and strong winds; perfect weather for staying inside. I had almost convinced myself the elements those clouds promised to deliver were an excellent reason to abandon going for a run.

I ran anyway.

And on my way home I had a silent chat with Caitlin. I don’t talk ‘to’ her, ever. I always talk ‘about’ her. But today, the music coming through my earbuds faded away regardless of what the volume button indicated, and I found myself lost in a one-sided conversation.

It was somewhat circular and disjointed, so I cleaned it up a little to share with you. Here, I found why I haven’t been overwhelmed with the sadness I was certain today would hold.

My sweet girl, it’s Valentine’s Day. I can picture you smiling, getting out of my car and headed into school, your arms filled with Valentine’s for everyone you would pass. I can hear your giggle as you would show me your goodies when you got home. I can feel your arms wrap tightly around my neck in bigger hugs than normal, because, after all, it’s Valentine’s Day.

But I’m not sad. 

Campbell is  struggling. She thinks I took you away to heaven, and blames me for not bringing you back home. She is certain I am responsible for your disappearance from our lives. I know it’s developmentally appropriate, but it still makes me sad.

Cole seems to be doing well, but sometimes without warning, he will start to cry or ask a question about you that tells me he thinks of you often, and misses you.

Courtney, too, misses you terribly and feels your absence as only a big sister can. She has a hard time letting her emotions out, and I am failing in my attempts to help her.

Daddy is sad at times too. He works hard, and comes home trying to smile for us. I can tell, though, that sometimes he would rather be alone and cry, or think of you. He doesn’t though, knowing we need him to be with us.

Grandma misses your sass, and the unique way that you could deliver that sass without being rude.

Pop misses your ongoing debate about who is a bigger knucklehead.

Nana misses your sweet hugs and kisses.

Dean, DeeDee, Holly and Jason miss you. I know, they tell me.

Your friends miss you. They sleep with treasures that remind them of you, and take them in for show and tell.

Those friends (really, they are extended family) who watched you grow from the day you were born, until the day you died, miss you. I know because I can see it in their eyes, and hear it in their voices.

Those friends and teachers and coaches and clinicians and loved ones we have met along the way miss you.

Strangers and people who have never met you, miss you.

I miss you, Caitlin. I miss you fiercely.

But today, I will not be sad. I will not cry for you. Because it is Valentine’s Day.

Today I will celebrate how much I love those right here with me.

I will celebrate my love for Campbell, Cole and Courtney.

I will celebrate my love for Daddy.

I will celebrate my love for your grandparents, aunts and uncles and cousins, and extended family.

I will celebrate my love and gratitude for our friends, both old and new, and for all the many people who have helped and cheered and prayed and supported, and loved you.

Today, sweet girl, I know your gentle heart will understand, and not be angry, as I rejoice and devote my own heart to each one of those we cherish, admire and hold so dear.

I rounded the corner as I finished my run. I thought how silly I was for having this kind of conversation. I looked in the sky to see the dark clouds moving back and forth, in and out of one another. I walked through the garage, grabbed a Powerade and headed inside with the garage door squeaking shut behind me. I passed through the kitchen, and, still unsettled with the feelings I had for having talked to my daughter when she certainly couldn’t hear, I walked out to the back porch and sat on the swing. 

You won’t believe me, but as I finished my drink, I stood, shook my head and started in side. I saw this. 

Happy Valentine’s Day loved ones, d 

The sky is getting bright, the stars are burning out…

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 opposite sides of a white chalk line drawn on a thick rope. Each side is certain they will be victorious, and to ensure that victory each team member digs their feet in the sand, grabs tightly to the rope and at the sound of the whistle, pulls with every bit of energy they can summon from their muscles. The rope moves slowly, being pulled in opposing directions, until finally, one team is able to move the white chalk line across the finishing mark, allowing a team to declare a win.

Now, imagine…

You are the rope.

That’s unfair, right? How could you imagine yourself being pulled and stretched in opposing directions? It was just an example, one that may not make sense, but I’m going to try and help you understand a little better…because my heart has been that rope lately.

A good friend who also recently watched a loved one die from cancer said the words I had been searching for to explain the conflict I’ve felt for a while.

She said, “Did you ever think it would be possible to laugh and cry at the exact same time?” And I knew what she didn’t say, but meant…it was TRULY laugh and TRULY cry at the exact same time.

I have to admit, I never would have thought it was possible until this past year. And, the past couple months have given her words an even clearer definition.

Given a certain circumstance, I would expect one emotion to follow another; happy then sad, joyful then angry, loving then confused. Instead, both feelings slam into each other (with full force of course) and the result is usually me holding my hands up and shrugging my shoulders, and, well, crying. (Because I have admitted before, ugly as it is, I am a ‘crier.’) These are moments when my heart wants to soar with happiness, but finds itself pulled back down quickly with a gravitational strength.

I’ll give you an example or two.

I have been concerned Campbell wouldn’t remember Caitlin. I have worried about how to help her remember without ‘pushing’ memories of Caitlin on her. So, I actually backed off and tried not to initiate those conversations with Campbell. So, you can guess the elation I felt the first time Campbell climbed in my lap, wrapped a tiny arm around me and said,” Mommy, Yaya is still for heaven, right?” I nodded, she continued. “And you can’t go get her and bring her home?” I shook my head, she continued. “And it’s not my turn for heaven yet, right?” I nodded again, biting my lip so I didn’t cry. She concluded with telling me how much she missed her Yaya. I was so thrilled and happy that Campbell remembered her sister on her own. And at exactly the same moment I was so sad that my baby misses her sister, that she won’t get to grow up making more memories with her.

I have watched in awe, as friendships have been formed, among children and adults. I have watched as families and friends have been recharged or brought back from a seemingly lost place. The connection, many times can be seen in a reason that connects Caitlin. My heart swells with pride for the gifts she left behind, and also with an ache that she wasn’t here to see them or appreciate them.

I find myself lost in gratitude and amazement at the incredible community and the kind and generous actions of so many people ‘Cheering for Caitlin’. But sometimes, if I’m not paying attention, I discover an anger that has set in around me; anger that we have all had to hurt so much in the process, and that Jeff and I have had to manipulate through a dense forest, answering questions, making decisions, explaining circumstances, and coping with something parents are not built for, and shouldn’t have to endure.

I listened to a song carefully in the car the other day. Usually, when it comes on the radio my car is filled with conversation and requests from my 3 active, busy little Downings. After a text from a loved one, I actually listened to the words. I found my heart stretched once more, in such polar extremes I was shocked at all the emotion it was filled with. Maroon 5-Daylight; a song that could have been written and sung by Caitlin in the dark hours of night before November 11, 2012. I cry with anguish when I hear the lyrics because they so clearly describe the night before Caitlin died. She uncharacteristically held onto me that night. She would wake up for no reason, touch my face, hold my hand tighter, or wipe away a tear. She was so quiet and peaceful, and smiled slightly with a knowledge I didn’t comprehend. While I want to allow myself to plunge into the anguish, I find myself smiling happily as I remember those exact same moments. 

I wonder, how it is possible that a heart that has been so shattered is now able to love so much more?

Have I self-indulged enough yet?

I have one final example for you. I’m even going to give you a visual, and I challenge you to tell me you don’t feel the tug of war in your own heart.

I saw this today with a friend. It goes the entire way around the sun. Look closely to the left, there is an extra, little, almost fluorescent piece of a rainbow. I think (selfishly), it’s a window, maybe into heaven…where a tiny little angel could wave her “hello”, on this beautiful, bright day…

Feel the tug? See what I mean? with love, always…

xoxo, d

there is more to part of this story…some incredible ‘coincidences’ that came in a rapid succession…but I’ve already written them into my book….so I won’t share them here right now;)

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 more than 2 weeks ago. And if you ask Jeff, what do I need a planner for? I have made the ridiculously difficult change from a paper and pencil planner to the virtual world of organizing and keeping track of appointments, practices, schedules and dates on my computer and phone. (Don’t tell Jeff, but it IS easier than paper and pencil.) So I gave up that other method long ago.

Why buy a planner then? Well, to keep track of the upcoming year. I did it last year, and decided, after internal debate to do the same thing this year.

Except my year didn’t start on January 1st, it started on the 13th, with a preview on the 8th.

I’m stuck; solidified in concrete. I am remembering last year. I remember the dates, and their significance, both the good and the bad. I told you we don’t do that, remember the bad dates. We have always chosen to celebrate the ‘good dates.’ Well, this past weekend, a friend gave me permission to remember, and I have to admit it felt good.

Last year, on Sunday January 8, 2012, Caitlin’s eyes crossed. I saw it, twice. I remember the concern. I remember each day as it passed; symptoms increasing, functioning deteriorating, and my own emotions escalating from concern to worry, and then panic, and finally the intense fear. I remember the moment I ‘knew’ it was bad news. I remember the seconds it took for us to hear the confirmation of the news that began our ‘new year.’

Back then, I got a planner. I wrote it all down. Every meal, every gift, every moment that I wanted to remember, every detail I couldn’t risk forgetting, every ‘coincidental’ occurrence, every story someone told me. That planner has no more space left to write.

I wasn’t going to do it this year. I changed my mind. Why? 

Well, first, we made it through the week of January 8th. I remembered, and I cried. But we made it through, one moment at a time. And when we got to the 13th we marked the day by participating in the Color Run with 13,000 other people in Orlando. We ran through the city. We ran through color. We ended the race a human painted rainbow. No better way to observe the day. (The week was actually filled with those random coincidental happenings we have come to define as ‘winks.’ Rounding itself out with a quiet cake and ice cream and singing of the Happy Birthday chorus for Campbell on the 14th; the day after her birthday.)

And the other reason I bought the planner is because of the Highlander with the magnet. Because really, it isn’t just the magnet, but what that magnet represents in a blazing way to me…

It is the tough football player who finds room for a 5 year old girl’s picture amid his awards and trophies and medals…

It is the friend who silently holds me when my sobbing threatens to never end…

It is the group of high school students who want to plant a tree…

It is the sharing of Caitlin memories over coffee and tea, when I’m not even present…

It is rainbow bears, big smiles and bigger hugs…

It is gentle words, quiet embraces, unexpected texts, kind emails, and phone calls when I’m guaranteed to be a crying mess.

It is reaching out, to me, and one another. It is family and friends, and acquaintances and strangers.

Yesterday I spent the day surrounded by piles and baskets and boxes, filled and composed of mail, bills, letters, pictures, receipts, paperwork. It also held little treasures and other things I have been avoiding for months, on purpose. It was things I didn’t know what to do with, didn’t have the strength to read or look at. Yesterday I did, for hours. And, I cried and I yelled. I am sad, and I am mad. I don’t want to have to put away the consents for the clinical trials. I don’t want to figure out what to do with the Hello Kitty purse mirror I bought at a Sephora store in NYC because Caitlin fell in love with it. I don’t want to have to call the insurance company again to tell them a bill(s) isn’t resolved. (And here is the selfish anger: why do I have to keep fighting insurance bills when I didn’t get to keep my daughter…)

But I did all that,  and I got a planner…

So I can continue to write it all down; not the kids practices and games and competitions, not the dentist and doctor appointments, not the schedules and the parties…

So I can write down the special things; the moments that give us strength, and joy, and winks. So I can remember every detail of every story, and the love and support that still surround us…

So I can write down I saw a new blue Highlander with a Cheering For Caitlin magnet on the back…

All my love, and thanks; for caring and supporting us while you deal with all your own lives give you too, d

PS- I have a confession. I have also been going through the letters you have written to me for Caitlin’s scrapbook, like I had asked you to. It has taken me time, to read all the incredible thoughts and amazing words. Almost every letter starts off saying,”I don’t know what to say…”

And every ONE of the letters I have received and read has touched me, so much.

And they are helping me, to heal. I predict they will continue to help me heal for a long time to come. And as Jeff, and Courtney, Cole and Campbell read them they will find healing in them. Thank you for taking the time to write them and send them to me.

(If you haven’t sent it yet, you still can! It’s not too late;) 

It’s What Caitlin Would Say

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 been noted as my biggest downfall, my worst flaw, my largest obstacle and what annoys people most about me.

It is my passion. It is the drive and intensity that accompanies anything I set my sights on and decide to go after. It keeps me awake at night and has even had me described as “relentless” at times.

It is not being stubborn or argumentative or unwilling to compromise, it’s different than that. But it has the same strength.

I had that passion when I was in school, and when I worked with children and their families. I have it when I run, or decorate, or create, or organize or manage.

I also have it in my relationships; when I care, or comfort, or support, or engage or love.

I can be an intense person to have as a daughter, wife, sister, friend, or, yes, probably my most intense relationship…the one I find the most passion for, is that of a mother.

I love my children, big. The same intense force that blows the rest of my life runs deeply here as well. It’s good. And it’s bad. And it’s, well, it just IS.

I’m taking an existential leap, but I wonder if love and pain walk hand in hand. And not just for me, for everyone that loves, and that hurts.

I wonder if the more we care, and love in a relationship with someone directly correlates to our level of measurable (or unmeasurable) pain when that relationship is severed or drastically altered. 

I think that the same love that would drive us to the ends of the earth for someone, actually originates from the same place as the pain when we have to say goodbye. I wonder if love is the opposite side of the barest pain, and to love someone with great passion and intensity and energy means opening your heart to a bigger ache…

So loving big, may mean hurting big some day. I know the love, and I know the pain…

I’ll take my chances, even with that knowledge.

When it comes to loving, 

I’ll go big, instead of going home,

every single time.

with all that love, and passion, and intensity for each of you tonight, d

A side note tonight…

Some of you have been ‘scared’ to approach me. Some of you are scared to speak to me about Caitlin. I only know because you’ve told me this. I know you don’t want to make me cry, and I often do when you approach me, introduce yourself, and say Caitlin’s name.

But please know this…

The pain that I have from watching my daughter die often has me standing close to an edge, and the ground is starting to crack and crumble away underneath my feet. I often will not cry when I am alone, because I am terrified I won’t be able to stop. I won’t cry by myself, because I may slip into that big black hole that I can’t escape. I work hard not to cry when no one is around, because the dragon’s fire just may burn me this time. 

When you say hello, and talk to me about Caitlin, I find a place that is safe, secure, and a place where I can cry and not lose my footing, or get lost in space, or burned by fire. It  is a place where you keep me from the dangers of crying forever, and ever and ever.

I don’t have to cry all the time. But, when I do, please don’t be afraid that YOU may make me cry…

I am sad, I will cry, but because Caitlin died, not because you spoke to me or said her name. 

Hearing her name makes me cry because I miss her, but underneath those tears is a joy that is unexplainable, you see, talking about her means you haven’t forgotten her…

and you recognize that I haven’t either.

all my love…

…and thanks to those who surround me, insulate me and love me, and allow my tears to flow without judgement or criticism or running away…