### Math Was Always My Weakest Subject…

When does 16 plus 24 equal 41?

Tonight.

Tonight, it did…and it still does.

Maybe that math is too big; let me take you all back down a few (or maybe many) years…

It started with 8 guys. 8 young guys, willing to take out student loans, because of a drive to practice medicine.

8 guys that studied because they dreamed, 8 guys that grew up because they had to, 8 guys that graduated because that was the only option.

8 guys that married women they loved, and grew families they never dreamed could be so perfect.

8 guys, that after more than 20 years, can come together as friends, and act as if they saw each other just last weekend.

These 8 guys came together tonight. For the first time in almost a decade, all 8 guys brought all 8 families together for the beginning of a holiday weekend.

The conversation at the beach today surrounded the reservation for tonight’s dinner.

“There will be 40.” I heard more than once. “16 adults and 24 children; that’s 40.”

These are some of my favorite people, but I found myself wanting to correct them,” FORTY-ONE, WE SHOULD HAVE FORTY-ONE!!!”

I bit my lip, and held my breath; because we had already had some special moments. (Some special winks, to be exact…and really, the hang-up on the number is another one of those ridiculous hooks that just happens to catch me sometimes.)

At 5:15 tonight, all 40 people descended upon a restaurant, and hugged like yesterday didn’t exist and tomorrow wouldn’t ever come.

And 40 of us sat down and had dinner.

But we had 41 show up for dessert.

A cupcake cake, designed into a rainbow with the prettiest (and most perfect) of colors arrived with bowls of ice cream.

Tears followed.

And so did the fireworks. We sat on the newly purchased property of good friends; across the bay from Atlantic City, casinos and lights glowing on the horizon. We sat on the dock, as 24 children ran through a backyard, blew bubbles, jumped rope, posed for pictures, complained about the wind, and begged for chips and juice boxes.

As we took pictures, (OK, as I lined up kids for pictures, and posed kids for pictures, and  bribed kids for pictures…) I turned and watched as family after family began to pull T-shirts out of grocery bags. The front adored with a medical school logo, that incorporated a special gray ribbon. The back screamed “…always cheering” and the shirt was a “teardrop rainbow tie-dye pattern”….(oh, yes, just like it sounds.)

And as all 40 of us climbed a neighbor’s steps as we pulled those bright, colorful tie-dyes over our heads; we politely asked that same neighbor to snap a couple of pictures.

And it was then, and there, that 16 adults, plus 24 children equaled 41.

So if it’s a tile plaque that falls on a picture after asking a absent child for an answer;

or a praying mantis that sits on a front door all day long;

or a medicine wrapper that appears on the floor of a recently vacuumed truck;

or the number 31, showing up anywhere at ‘just the right time,’

or a gold earring found 9 months after a friend’s visit;

or a rainbow that comes with no rain;

or friendship that defies time and distance.

16 plus 24 can equal 41…

always.

And good friends (both old and new),

will always remember, never forget, and wait with open arms,

regardless of time and distance.

with love, to ALL our friends, especially those nearest and dearest…d

### Chasers and Pavers

I didn’t come up with that title.

I didn’t even come up with the idea for this entry.

I wasn’t sure I was going to write it.

Last week I wandered the back yard, an umbrella in one hand and my phone on camera mode in the other. The rain fell slowly but in big droplets, and they fell to the Earth in a hard and angry manner.

I finally resurfaced back inside and finished making the dinner I had abandoned when the sky turned black in my back yard with the sun shining brightly from the front yard, and the rain began to tap and ping on my back porch roof.

Once inside, I turned to Jeff and the kids and laughing said,”Its a good thing our neighbors like us, otherwise they could post some pictures of crazy-Mrs.-Downing, standing in the backyard looking for ANOTHER rainbow.”

The weather outside didn’t change as my family inhaled their dinners. I got busy with Campbell, but found my eyes still wandering to the back windows in an effort to glance at the sky in search of a colorful treasure.

“Want me to go look?”

It almost came out of the corner of the room. Jeff stood, my umbrella attached to one hand, the doorknob turning in the other.

I stared after him as he took my place in the backyard. He was outside for a long time, and when he came in it was through the front door; which means he walked through the gate and around to the front yard to continue his search for what I wanted to see.

“Nope, not tonight. Sorry…”

By itself, it is a sweet and thoughtful gesture from a husband to a wife. But I know now that it didn’t simply start that night, nor will it end there. And it’s bigger than a one-stop gesture…

The next night I got a text from a friend who was in Texas for a work trip. “Just walked past a bar and heard a guy singing’I’m tired of chasing rainbows, so tired of chasing rainbows.’”

A few text exchanges later, that same friend asked if Jeff looks for signs, the same way I chase rainbows. Interesting on a couple levels…

Early on, I was so fast to defend Jeff; why he needed to work since he was the only physician left in his practice, why I traveled alone with Caitlin most of the time because we had a business and a home and a family, why I blog and Jeff doesn’t and how I took over all writing and sharing and didn’t even ask him if he was offended, why, why, why…I wanted everyone to know…just know…that he was fighting and hurting and struggling, and loving and breaking and staying strong; just like people were seeing in me. I defended him; I defended us.

So, my first response to last week’s text was that Jeff doesn’t chase rainbows like I do.

My second and almost as immediate thought was that I had to defend that Jeff doesn’t chase rainbows.

But I didn’t defend, because I didn’t need to defend.

Instead,  I explained it for what it is; I need those rainbows when they’re out there. That’s how I ‘feel’; intensely, and with all my heart and soul. So yes, I chase.

Jeff doesn’t chase, but that doesn’t mean he doesn’t believe, or he doesn’t love; he simply doesn’t chase. (Honestly, if we WERE both chasers, it could be difficult to live with each other, I think.) So, I call it a good balance.

But, the reason I never needed to to defend was the next text that lit up my phone. “You know, that you’re husband will watch you chase the rainbow.”

I started to cry; he does watch me chase rainbows. I kept these next thoughts to myself as I considered what I had just read. He does more than watch me most days; he encourages me to chase, he let’s me talk about the chase and what it means to me. Sometimes, he chases for me…

“Some people chase rainbows and some clear the path for them to chase.”

So many have helped clear that thickly wooded path for me, while my eyes have been turned upward, searching for that next rainbow.

I think it takes both kinds of people to make the world turn. I’m thankful for my husband, my son, my parents, my incredible friends and the kind hearts of those I barely know…for chopping down trees and pulling up roots, so the path could be cleared as I chase rainbows, and my daughters follow closely behind, chasing too.

I think,

no, I know,

I’ll always chase them.

love, d

I know many who chase rainbows. But, I know very, very few who chase as hard as I think I do. Caitlin’s treasured and beloved Dr. Mark (Souweidane) is one of those people. He’s chasing a rainbow too as he tirelessly continues to fight in searching to find a cure for DIPG. As a family, we continue to strongly support Dr. Souweidane. But, he has helped to build a rainbow for our family this time. On July 27th, in New York City, a 5K is being held to support research for the treatment of brain tumors. Dr. Mark has chosen to dedicate the event to our Caitlin. Weill Cornell has formed a team and the money raised by this Weill Cornell team is returned to the Weill Cornell Pediatric Brain and Spine Center to help Dr. Souweidane continue his fight. Our hearts are touched by this incredible thoughtfulness, and we are humbled by such an honor to our daughter. Courtney and I have decided to return to the city at the end of the month to participate in this event and hopefully run a few strides alongside Dr. Souweidane and his team.

(After posting this late last night, many people have asked to see the team page.You have to copy the full link to get directly to the page. I’m told that soon a press release will be attached to the Weill Cornell team page, including Caitlin’s story.)

And one more final moment to share. One of those most near and dear to me texted me this morning after reading this entry. She was a second mother to Caitlin, and loves her tremendously. After commenting on the entry she asked,”You know who the biggest paver is, right?”

"It’s Yaya! She’s paved the way for Dr. Mark and his research. He will find a cure and we will see the biggest rainbow shine in the sky. Rainbows will take on a different meaning when he gets that breakthrough and its (partly) because of our Yaya; because she was so brave."

thank you, my sweet friend

### A Chinese Proverb

Maybe Freud was right.

Maybe I was already lost in thought.

Maybe it really happened.

Maybe it’s because I was so angry at the cemetery last week.

Maybe it’s because I’ve had some good days.

Maybe it’s been happening and I’ve denied it.

Maybe it’s been the hurdle I thought we had cleared.

Maybe I wanted it to be.

Maybe, I just wanted it to be so badly.

Maybe, it just is what it is, or was.

“Don’t look here for Caitlin”

I’ve caught myself saying it as a warning, as protection, and as a defense.

I’ve found myself saying it when people have turned to Campbell to seek for Caitlin. You know what I mean, right? People search Campbell, looking for a piece of Caitlin; her smile, her gentle way, her unapologetic sweetness, and forgiving selflessness.

I’ve warned against searching for Caitlin in Campbell for 2 reasons. The first is, Campbell might kick you if you get too close. (You laugh- but I’m serious. She’s a handful and a half.) The second reason for the warning is to warn you that she isn’t there. They are opposites, completely and totally. They were as close as peanut butter and jelly- once it touches the other, it is absolutely inseparable. Peanut butter always, ALWAYS sticks to the jelly.

I’ve laughed as I’ve given out my words of protection against speculating that Caitlin is in her little sister. Again, the first reason is for your own protection against Campbell- she’s got a good arm. If she decides to throw something and wants to hit you, she will. (I know, she’s aimed at my head and hit it.) But I also give those words in an effort to protect hearts. Lately, I’ve realized I’m protecting my heart as much as I’m protecting yours. Like a knight in armor, with a shield and a sword, I stand guard. I don’t want either of us disappointed when you can’t find Caitlin where you anticipate she will be. I try and preserve our hearts (all of them) from getting our hopes up that Caitlin might surface and we could catch a glimpse of her. Believe me, nothing would please me more than to catch a piece of that angel here on Earth.

A finally, those words come from a defensive place. There is only one reason for the defense in my delivery. They are solely for my youngest child. Seems a little odd after the way I’ve just described her, doesn’t it? Well, for all her impatience and short tempered ways, she is positively spirited, fiercely ambitious, unabashedly determined and lovingly full of life. I defend her against her next older sister with the best of intentions. Are you asking yourself why I would need to defend Campbell from Caitlin?

It’s a deep concept, and one that some will disagree with; but as their mother, I get the right to worry and be concerned about it.

Long before Caitlin ever got sick (I mean YEARS before Caitlin ever got sick), I described Campbell and Caitlin as “twins born at different times.” The relationship Bull and Yaya shared is only definable as that of twins. The way twins ‘feel’ for each other, ‘talk’ for one another, and connect without contact in a pattern that language cannot describe. It’s a lock between two siblings that defies all ability to explain or understand. Twins often have this kind of connection. Twins, typically, have a different “soul felt” relationship than traditional siblings have. Caitlin and Campbell shared that affinity since the day we brought Campbell home from the hospital.

After Caitlin got sick, I was almost grateful for the difference in their personality. Knowing that Caitlin would likely die, I never wanted Campbell to have to fill Caitlin’s shoes. You’re shaking your head, right? “No one would ever expect that Denise!”

But I would. It’s honest and real, I would want Campbell to fill in for Caitlin, at least a little.

So I was relieved when I could honestly say,”Nope, not here. There is no Caitlin to be found in Campbell.”

And then, well, then I saw pictures of Caitlin at Campbell’s age; they were almost identical. Campbell started to talk more and more, and grasp on to more of her personality. Her humor has taken shape. Jeff and I have stolen sideways glances at one another; our look is without words, but clearly says,” OMG, that’s just like Caitlin!”

(Don’t get too excited; I don’t think she’s going to start having empathy for the pajamas- see last year’s Father’s Day post;)….BUT….

Three days ago Campbell started to play the ‘surprise kisses’ game with me EXACTLY like Caitlin used to play it. (Campbell wasn’t yet three years old when Caitlin died.)

Then tonight, came the lightening bolt I hadn’t anticipated…

Courtney was at cheer practice, Jeff and Cole were out to get haircuts, and Campbell pulled a beanbag into the laundry/craft room and played on the ipad with loud giggles as I cleaned and folded and picked up and put away.

“This is so WIERD mama!”

For a full, complete, nano second, my world stopped. My heart stopped. In the fraction of a moment that it took me to lift my eyes and look toward my daughter, this thought ran through my head.

“It really was just a nightmare. It’s over now. Thank God it’s OVER! She really is still alive; no one says ‘weird’ like that. None of my other children call me mama. And the touch of a Southern draw when she called me that familiar name. Caitlin isn’t dead.”

I burst into tears when I made eye contact with Campbell.

That’s embarrassing for me to admit. I’m not going crazy, losing my mind, or having a hard time coping with my daughter’s death. I just couldn’t believe those words came out of anyone else’s mouth…

I took a deep breath.

It’s ok, I will allow myself to find Caitlin in Campbell. I won’t hold her to any expectations except her own. I will love Campbell for Campbell. I will treasure her strong will and unique wonder of things around her. I will cherish her love and passion for going after all life has to offer.

And I will smile when she gives me surprise kisses. My heart will leap when she calls me “Mama.” We will adore her sass, and her laugh. I will watch as she tilts her head, wraps her arms tightly around my neck, and stares at me; all the same way Caitlin used to.

Because, as an incredible friend pointed out to me tonight,

“I think you need to cherish all those traits of Caitlin you see in Campbell. There is a little bit of Yaya shining through her little sister.Only those two had a bond strong enough to allow those traits to carry over.”

She was so right.

So I will cherish those moments for all that they are,

and nothing that they aren’t.

so, you can now too.

I mistakenly came across this Chinese Proverb tonight as I was cleaning out some old magazines. I thought it was quite a coincidence, given I was in the middle of writing this…”Flowers leave a part of their fragrance in the hand that bestows them.”

so much love,d

An extra note of love and wishes as a special boy celebrates his birthday this week. He is loved so dearly. I know he will get the best seats to the most incredible fireworks display ever shown. xoxo

### Science and Physics

Sometimes, life is about a collision of perfectly timed events…

Today ended up in some of those events intersecting into thoughts that had to be shared.

Tonight,

Wait, I should back up and explain ‘today’ before I explain ‘tonight’,

Only a few people are aware of some of the habits I’ve fallen into. They are exactly that, a “habit,” and routine, or even ritual of sort for me. They provide me the same comfort that a child under the age of 5 years relies on;  a dependable, safe, expected set of activities that occurs regularly, and becomes something that is trusted in.

Well, once summer break hits, and the kids are out of school, all bets are off; “routine” goes right out the window. Truthfully, since Caitlin was diagnosed a year and a half ago (could it really be that long, and that short ago?!) the routine in our house has been scarce, and rarely kept to.

I’ve tried; we’ve all tried. Knowing that we all are in desperate need of “routine,” “regular,” and “normal” we have purposely strived to get to a place of allowed dependency. We all need to count on something right now, even if it’s as simple as a methodical, programmed, ordered set of customary behaviors; that’s ok.

This week, I veered far from that beaten path. Without getting into detail and boring you, or explaining away something I won’t allow myself to feel guilty for,  I will tell you that I ended up at the cemetery today to say hello to my angel. I was stunned at the depth of my brokeness and devastation as I climbed from my car and headed toward Caitlin’s place of rest.

Fast forward through my tears, to juggling kids to and from activities, not one but two, TWO of Campbell’s melt-downs, and evening activities and games, to a Florida rain shower during a bright sun-shiny few minutes. Of course, you know, there were rainbows. And, as is ‘routine,’ they were texted, and posted and shared and loved.

Here is where the evening takes another turn away from the norm. I texted the rainbow in my backyard to 2 far-away friends. One replied with a little bit of a challenge before exploring some definitions and ideas that had me running to my laptop. Thoughts I hadn’t looked at before; and honestly, I was a little surprised I hadn’t…

The word rainbow is a compound word. (Ok, stick with me, I have a point…)‘Rain’ is often a depressing word, containing a sad and dreary connotation. (Even if you love rain, or storms, it has a down and dark feel to it.) ‘Bow’ on the other hand, is a happier word. Merriam Webster defines bow as “something that curves,” but the words that come to mind with that definition are beautiful, even majestic; curve, arc, angle, bend, turn, loop, spiral…

Rainbows typically have my heart pulled in those same opposite, yet complimentary ends. Beautiful, yet tragic; happy, and sad; majestic, and dark. But, scientifically, it takes both ends to make a rainbow, doesn’t it?

Here’s a thought I’ve held onto for a long time. It was suggested to me before, when I struggled to gain understanding in a desperate time in our journey. It was a time when I longed for explanation and answers; when I sought to find the truth, and prayed for miracles. It was a time when I stood on the line between faith and reason, wrong and right, science and spirituality…

Rainbows are nothing more than an optical phenomenon. Science would say that trying to define the presence or absence of a rainbow is comical.  Science would explain, reasonably, that a rainbow occurs when the conditions are just right; when the sun is in the correct angle to reflect off the droplets of water that are within the Earth’s surface. It is nothing more than a spectrum of light that appears in the sky and takes on the form of a multi-colored arc.

If you know me at all, you know I’m about to defy that as far and wide as I possibly can…

“Science” doesn’t allow for gut reactions, reflexive responses of the heart or soul, or the permission of the unexplainable faith.

I’m married to someone who believes in science. I’m friends with someone who is a fabulous scientist. I enjoy science. But I have a big problem with science…and it starts with all that.

And here is where it ends.

Hold on, because I’m taking this one step deeper.

At times, I’ve been told I’ve tried to hard to draw the lines and make connections; that my “winks” are nothing more than what I want to see; that when I attempt to define the chance and coincidence in my life I am trying to comfort myself. I’m okay with all of that.

But look at this and tell me it doesn’t tug a little at the un-scientific part of you…

I never looked up the name Caitlin. It didn’t matter to us what it meant, it just sounded good. Actually, I’ll tell you a secret, our 3rd child, a female, was called Campbell until she was about 81/2 months grown inside my belly. We named all our children with the same initials (a semi-tradition proudly passed down from the Pflaumer side of the family). Jeff wanted a ‘Caitlin’ desperately, but we couldn’t agree on a middle name that started with a ‘P’ that fit between Caitlin and Downing; we skipped it and went with Campbell Payton instead, a close second favorite to ‘Caitlin Blank’. Jeff came home at the (literal) 12th hour and presented Caitlin Presley and I immediately fell in love with it. But I never bothered to look it up; it sounded like music to me, so I considered it final.

Caitlin means “pure.” Again, taken out of context, “who cares?” But, stick with my thoughts tonight, and insert the meaning of pure into the world of color…

A-ha…are you there? “Pure” in this arena means “unmixed,” “authentic,” “undiluted,” “clean,” and “pure.” (The list goes on and on and on.)

Take a prism, hold it up to clean, undiluted, unmixed and authentic light. What will happen?

You don’t even have to go to the lab to perform this experiment, because you already know…

That pure light makes a rainbow when it comes through that prism,

every.  single.  time.

the end.

lots of love, and hugs,

and winks (even for my non-believers)…..d

### What if the Soul had Voice?

Caitlin gave me huge gifts this past weekend, yet again. She gave me back some incredible people; friends who have reached out to me after many, many years because they learned she was sick, and later died. She gave me the gift of new friends, who I hope become ‘old’ friends someday. She gave me deep breaths, smiles and tears and comfort in a different place with some different faces.

Just a few more gifts to add to many she continues to bless me with.

A dinner with some of those friends started off with this statement,

“We want to know. We want to ask. We want to talk about it. But we don’t know your comfort level, and what you want.”

A walk in the sun, and a cold wind had this comment being offered gently,“I want to talk more about you, and less about me. But I never want to push too hard. I never know how to start or what to say. I told you I’d be here for you; but I don’t think you always believe that.”

A last minute lunch found conversation easy, even after more than a decade (or two), until,” How are you?” (Pause) “I really mean it. I really want to know. How are you?”

A first time meeting someone new had the kind woman opposite me flooded with tears before mine even started.

Each of those situations ended in hugs, and continued communication; I was so blessed by each one of those interactions.

But it got my thoughts kicked up a gear, and made me search for an explanation to similar questions that have been asked and opinions that have been expressed in the recent past.

The “story” of Caitlin and her DIPG, and eventually her death is a horror. Scarier than anything Stephen King could pen and publish.

Our grief is often times a threat to others, and completely understandable. I have said to only a few close friends,”Imagine it was (fill in their child’s name.)” Every time, that friend will say,”I CAN NOT go there.” And believe me, I wouldn’t be able to either. One friend told me that when encountered with those thoughts about their own child, a wall immediately went up, in an effort to protect the heart and all its emotion.

When I answer those questions and conversations, I honestly DO NOT have any problem talking. My hesitation and pause comes from one small corner of my heart; the reaction of the person I’m talking to.

Anyone who knows me at all knows I certainly can tell a story. My problem is knowing when to stop telling a story. I’ve been called long winded, and been told to get to the point by more than one person.

I can cry and not get embarrassed. I am usually open and free with my tears; like a bird with the ability to soar infinitely. I don’t cry when someone says Caitlin’s name, brings up Caitlin when I’m in a good place, or tells me a story or memory I didn’t know. I don’t cry as a result of someone else is crying. I cry because my daughter is dead.

The look of terror in a person’s eyes when I’ve told too many details to the story…

The sideways glances someone makes when I’ve cried too long or my make-up starts to slide down my face…

The offers that I make to others allowing access or asking for help, that have them stumbling over their words because they feel the need to apologize for not wanting to be a part of something…

Those moments when the person on the other side of me becomes uncomfortable…

miserably, unbearably, shamefully uncomfortable.

Those are the moments that are unnerving and make me want to crack into pieces. Ask me questions, I’ll tell you anything you want to know. It’s almost easier for me to know what someone would like to hear, than for me to try and guess. A friend once asked me (from behind the safety of a text) if Caitlin knew she was dying in the hours before she died. Some of you are gasping right now, thinking that friend crossed the invisible line of decency. But I have to tell you honestly; while I certainly can’t answer that question 22 times a day, it was a little relieving to have someone ask me that. I haven’t talked about that specific detail except once or twice with friends who are in and out of my house regularly. I certainly don’t tell it every time I talk about Caitlin (again, because I don’t want to see the fear on someone’s face when I would say it.) But that question was honest when asked and truthful in its quest for acknowledgment.

I also recognize many times the intensity of my pain can be frightening. It can be difficult to hear, challenging to sustain, and near impossible to respond to me sometimes. My thoughts constantly repeat themselves,”How much information does this person really want to hear right now?”

This is how I finally decided to answer a friend this weekend. I told her,”I’m not ever afraid to talk, or answer any question you want to ask. I’ll let you know if I need to stop. But you have to let me know you want to hear me, and you have to promise not to run from my tears.”

Thank you to so many of you, who face my tears, look me in the eyes and stay by my side, helping to hold my heart while continuing to love and support me and my family.

with love,d

I searched and searched for something ‘someone else’ has said, to give you a different set of words to help you understand. I finally came upon this short quote from Katherine F. Donnelly, in her book Recovering from the Loss of a Child.

“Our society has perpetrated a fraud. We are led to believe that the last thing bereaved parents would want to do is talk about the death of their child. The complete reverse is true. Parents want to talk and want someone to listen. Someone who can hear the crying of their soul…”

### The End of a “Year,” the Beginning of June…

hello friends,

It has been a while…

I haven’t written. Well, that isn’t entirely true- I have written, I just haven’t posted in a while.

The reason why is this…

Some days are ok. They really are; some days I can maneuver without melting down at the site of a small girl in Hello Kitty. I can get through the day while carefully avoiding the second floor of my home (so I don’t climb back into bed), I have showered, dressed and dried my hair and put on make up and smiled when I saw others, I have enjoyed bigger parts of my day than I have before…

It sounds reaching and desperate and pitiful, right?

To me, and to those closest to me, these behaviors are nothing less than huge accomplishments. I had been on a roll of several “okay” days when last Wednesday creeped and crawled, and jumped out of the shadows and shocked me terribly. It felt like I had been running with my eyes closed, and suddenly and without warning, I hit a brick wall and fell to the ground.

What was last Wednesday?

It was a day full of so much. Jeff got an unexpected day off of work. I went out to breakfast, sent presents to school, kept reminding myself of dismissal time, went shopping, watched a friend’s son when school let out, and took Courtney to an important doctor’s appointment. Oh, and it happened to be the last day of school for my kids.

I wasn’t ready. I didn’t think it mattered, really.

Why should it?

I still don’t have all those answers. But I know about an hour before school released many summer-hungry children under the age of 11, my heart broke, and so did the dam holding back my tears and emotions. The crack in my heart trembled, and along the fault line I found fresh, new evidence of recent activity.

I cried; for a little girl who would have been so happy for completing Kindergarten, but would have been sad to leave a beloved and special teacher. I cried for the understanding that when this school year started, Caitlin was “herself.” She was active, eager and so excited for all that the next 9 months would hold for her. She was ‘here.’ We could touch her and hold her and hear her laugh and watch her smile, and hear her chatter.

She didn’t know there would only be 3 months, not 9…

So I cried for myself. And I cried for my child. And I cried when I learned that DIPG has hit too close to home, again. And then, even one more time, if you can believe it. A child that lives so close has been diagnosed with DIPG; I can see the battle her family is waging. Another small and innocent girl, diagnosed and then passed in less than 2 weeks time; again only miles from my home.

I cried…you all know I cry often, it isn’t a secret.

But this time, I cried a fresh set of tears. These tears, came with a touch of ease, and a lack of embarrassment. They were real and honest, and carried no hurried explanation from me.

I cried them because I needed to. For the first time in 6 months months, I just cried, that’s all.

And in my heart, even before the first of my tears hit my lashes, I knew they would end. How did I know? When did I figure that out?

I’m not sure…

But I do know this: I will cry, and be sad, and miss my Caitlin every day for the rest of my life.

Some days I will struggle. I will miss her terribly. On these days, I will hold on tightly when the rain makes the water rise and threaten to flood. I will secure a grasp on a sturdy structure as the wind howls louder and screams in my face. I will turn my head from the black hole that opens up in the ground at my feet, pleading with me to take a step closer.

And if I hold on tight enough, and turn my head long enough, the rain will give way to the sun, and the wind will give way to calm, and the abyss will surge back together and become stable ground again.

And, I will find, that my tears will stop. I will re-engage and find smiles and laughter.

The sadness will take a seat, if I let it, and if I believe it will.

So, I’ll keep believing…

Thank you, with all my love, d

Sometimes, believing is the hardest part…

I leave you with this tonight, as I finish my thoughts for tomorrow’s post❤

### 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 said it. I mean it.

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.

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.

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

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

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