2 weeks ago as we were hustling the kids to the soccer field, I heard a Mom shout out ‘Wait for Mommy, Declan!’ It sounded so natural in my head because I was a bit frazzled and then, dagger … not your Declan. It will never be your Declan.

Then yesterday Cole and I were playing in the park next to Brady’s soccer practice, as we walked up for the first time I heard the Mom say, ‘Look here, Declan! Smile for the camera, Declan!’ Dagger, dagger. I overheard her telling another Mom he was 18 months old. He was darling and toddled around the playground the whole time we were there…while she cheered on his every move. We never got that chance. He never toddled for us…he had only just learned to sit when cancer came knocking.

My broken heart tried to stay present with Cole even though he had no clue the torment this trip to the playground was causing me. God love him and his imagination, he did his best to keep my mind off of little Declan playing next to us. Someone else’s Declan.

Cole has a fantastic imagination for play and he conjured up a myriad of scenarios for us … we were spacemen, looking for the rocket ship store; we were pirates who had to watch out for the ‘spikey spikes’ of the crabs in the water at the end of the plank (slide); we were extreme climbers (my words … we had to climb to the top of these kinda tall bars) to the top of the mountain; we were circus stars balancing on the beam; we were store clerks who needed to know the secret code to open the store; you get the picture. It was great fun. I love playing with him this way and am enjoying the one on one time Brady’s soccer practice affords us; but I’d be lying if it didn’t make me sad. Most days it’s just a little shadow of sadness for what he and Declan (well, all my boys) are missing. But yesterday, I was repeatedly called back to the present from my spaceship or while evading the spikey crabs by the sound of ‘Declan!’ ‘Smile, Declan!’ Called back to what should, but never will, be.

My heart was in my throat then filled with laughter, over and over again. The crazy tightrope we parents of children who have died walk, every day.

I guess I was just surprised to hear his name, spoken out loud, in public. It doesn’t happen much, well never really unless it’s a conversation I am engaged in, so I wasn’t prepared. I didn’t get to steel my resolve before I walked into the playground or to take a deep breath before I gathered our sideline gear, like a Sherpa, headed to our designated field. I know this won’t be the last time and I know I cannot adequately be prepared for when it does …
just another landmine to navigate in this journey we now travel, without our Declan.

It’s the thing that’s the hardest, there is a fiber missing from the cloth that is our family. We can make it look nice, dress it up and take it out on the town but we know the fiber is missing. It will always be less than it could be. Still good and perfect and fun and loving, even deliriously happy … just missing one key ingredient, forever.

It has left me thinking (probably because I am away from them right now) what would I want my family to know if the unthinkable happened while I was away from them?

I would want them to know (even though I was angry and surly yesterday) that my life has been amazing because I was blessed with their love. Has it been easy? Um, no. There has been hard, even awful but there has been so much joy, bliss, giggles, and sunshine in my days; and through everything that has happened in my life, I was loved. Whether it was my Mommy and Daddy who were always there for me when I was growing up (I’m still growing, BTW) or my brother who has given me insight into events in my life like no other could or my aunts, uncles, cousins, nieces and nephews during our many family events together or my friends who have witnessed the silly, sometimes craziness, of me or my amazingly beautiful children whose simple gaze in my direction fills my heart with such warmth and peace, it is still mind boggling to me or my husband who has truly seen the under-belly of one Sherri Ann Christine DiLoreta Carmical and still looks at me with eyes that tell me I am loved completely.

I am blessed to have been given their love and been given the ability to love them in return.

That’s what I would want them to know.

(ACK! I just re-read this … normally I don’t, and realized I left off my amazing Mother and Father in-law!! Truly I don’t think of them as ‘in-law’, they have welcomed and treated me as one of their own from day one. Their complete welcoming of me into their lives is testament to their love and I couldn’t love them more for it. I hope my actions with daugther’s in-law when the time comes, will show my true appreciation to them.)

So why did I wake up angry this morning? Not grumpy…angry. I’ve been trying to shake it off all morning but it just keeps tugging at me. Why? There’s no reason for it, and then again there is.

He’s not here and it’s (excuse the use of the next word … I got grounded for its use in high school and my Dad still scolds me for its use at the ripe old at of 46) pissing me off lately. Maybe it’s the ‘hopes spring eternal’-ness of the spring. Maybe it’s the start of the spring sports season and Cole started soccer, alone. Maybe it’s all the darling, chubby little babies I’ve seen, each with their little Sophie the Giraffe in tow. Maybe it’s the stresses of dealing with the repercussions of 12 months without having a job. Maybe it’s because I wake up every morning with a visit from the ‘Sandman’ and am left to wonder if I’m crying in my sleep because I rarely remember my dreams (never have) and the sandman hasn’t visited me regularly in years. Maybe it’s that I’m no different from everyone else and every now and again folks just wake up angry. Maybe it’s just that my heart gets broken open every day and while it’s not outwardly apparent, it’s there and it hurts. Maybe it’s that yesterday I watched this beautiful little boy blowing bubbles into the spring breeze, over the pictures of his twin in the background … forever silenced by cancer.

Maybe, maybe, maybe.

Am I grateful for what I have? Absolutely! But waking up angry is just a terrible way to start the day. No leaping out of bed with a spring in my step and gay tune on my lips. Just surly and trying to feign a decent mood until the kiddos are off to school. Ick. I pray they don’t sense it but I’d be living in la la land to think they don’t … and that makes me sad. Sad for the whole experience of it all.

It does, like Declan, make me acutely aware of the moment and, most days, helps to draw my attention to it so I can pull my myself up out of it, for everyone’s sake around me (and my surly mood) but some days, I’m just … well, pissy (sorry, Dad).

(Note: I penned this before the awful events which took place in Boston yesterday. Apparently, I did not correctly post it. I am deeply saddened by the events of yesterday and am praying for all those affected.)

I remember your son.

The warmth that spreads through my chest when it happens is like no other. I remember your son.

Sadly, it happens less than you think and over time has dwindled to very infrequent. I understand. I don’t like it but I understand. We have learned, most don’t know what to say or feel the act of remembering (and sharing) will invite pain that does not appear to be there in that moment. I don’t begrudge you for it … mostly. (Ok, I had to be honest there because it does irk me. Mainly because I don’t get to talk about him as much as I would like. Truth be told again, it will probably never amount to anything near what I would like.)

I am happy to tell you this weekend I was treated to THREE different women who talked to me about my sweet Declan. Three people within a short 24 hour period introduced themselves to me and said, I remember your son. It was like winning the lottery (By the way God, Stan and I are serious … half the money we win in the mega, crazy, you’ll never win but why not try lottery is going straight to childhood cancer research. Who are we kidding, it doesn’t matter how much we win, it gets half. Just sayin’.) But I digress.

I know people remember but too few bother to mention him. I also don’t want to force this on those around me just because I wrote about it (unless you want to chat about Declan than I’m all yours!) but I cannot begin to tell you how awesome it made me feel. Maybe because it’s been awhile or maybe because it’s March and March is hard because it’s the month our lives changed forever or maybe because I miss him with every beat of my heart or maybe because Cole plays so good by himself and my heart breaks for what might have been between them (I’m also not delusional enough to think they wouldn’t be throwing rocks at each other and screaming, MoooOOOOoooommmmmmm he’s touching me!)

I think that’s why it hurts to think people don’t remember because it’s all we have left. Those 357 days and the memories of those days … only to be shared once as a complete family unit.

So thank you to those 3 lovely souls who helped to fill mine up again. Four simple words that made a Mommy’s heart smile.

We’ve learned (our) children’s grief is more likely to rise up during special events in their lives versus our which is constant. After a particularly rough time with Will around our first holiday season without Declan, we are acutely aware of this fact and try to keep our eyes open for any differences in temper or the tempo of their lives.

Brady is probably my son that speaks about it the most…most likely due to his age and, unlike Will, he doesn’t filter based on what it might mean for us and our hurt hearts.

I wanted to share with you a special thing that happened this week. It is so sweet and made me realize the brotherhood bond is much stonger than the space of time and distance created by his death.

We have story time each night and on most nights we spend some of the time chatting about whatever comes to Brady’s mind. Some of our best conversations and insights come from these chats. On many nights, silence comes and sadness washes over Brady’s face. I know exactly what is coming next…he misses Declan. It is crushing and hard because I know he doesn’t fully get it even though he tries to understand the concept of death. He knows he’s not coming back but the full magnitude of it is tough.

The other night, he became sad and through a tear-choked voice said he missed Declan. (It truly breaks my heart). We always talk and I let him tell me about it. On this particular night, he told me he wanted to bring Declan something. He said he was wanted to give Declan his elephant. I told him we could do it the next morning, truly not expecting he would remember. It was a special elephant given to him by our former au pair, Rachel; something I know is very important to him so I thought a good night’s sleep might change his mind.

Fast forward to 6:15am…
Brady – Ok, Mom I’m getting dressed so we can go to see Declan!
Me – Um, sweetie we need to wait until a few more folks get up here ok? Brady – Ok, but as soon as they’re up, we’re going.

When we finally headed out and started talking again about what he getting ready to do. He relayed this story to me.

He has wanted to give the elephant to Declan for a long time, i.e. bring it to his grave, but I gave it to Cole before he could do so. (He even went on a recon mission into Cole’s room to get it back.) He felt that Cole needed it but now he feels like Declan needs it more so he could know how much he misses him. (gulp!) I know what the gravesite does to adorable stuffed animals and tried to persuade him to keep the elephant in a special place in his room to remind him of Declan and on especially hard days he could bring it down and hug or sleep him. He was firm, he wanted to give it to him. (I asked several times.)

I must say it was so adorable and sweet. He was so proud and happy to be giving his little brother his special stuffed animal. My heart (much like the Grinch) grew on that very spot.

I wanted to share my sweet boy and his love for his brother, a love that lives on.

Tonight (as I do in so many regular old “life stuff” since Declan died), I found myself imagining that moment in Heaven when loved ones get to be reunited with their family. The pure bliss in feeling that person in your arms again (yes, I know the worldly body is gone but I’m sticking with what I know now). Their smell, their touch, their sound…your family member, two pieces of the whole brought back together again. And then I get really heady with myself…I’m not really that way but this is what I tell myself…if this is what 30 days is like, imagine the mind blowing moments when we reunite with our loved ones in Heaven.

The bond mended. Everything is whole again. Bliss returned.

On some level it is what I envisioned for Declan as he began his journey on the other side, with our family gone before us. So blissful to welcome one of their own. It gives me peace (most days…jealously on some) to know he is with family being cared for by some of my most favorite people.

I wonder if Jeff Probst could orchistrate this for me with Declan…to see him, to hold him, to know he’s ok. All the while knowing it would be short lived…but just enough to tie me over until we are together again. I wonder.

Our sweet Declan’s Journey, well, has always been a bit different than ours. I wish to God it had taken a different path but that was not to be for our sweet boy. Our journeys intersected…his, ours, yours…and I struggle with marrying it all together. I rejoice in his life, our life as a family leading up to March 9th. I rejoice in our experience with Declan during his illness…not for the pain, clearly, but for what we had as a family together, even with all the fragmentation. And what we learned about our community, the people that were there to support us and even those who were not. I rejoice in Declan since his passing and what he has taught us about living…and here in lies the struggle for me. I know how truly precious today is…I know because my brave son taught me during his all too short life. I know, I get it and yet I feel cheated. I feel angry. I feel the hole in my heart…not the part that loves him, that will never leave me. I will carry my love for him (and all my children…you too, Stan) every second of every day…it is cemented. The hole I speak of is the loss. The utter pain of losing something so precious, so precious that words will never be adequate to describe it.

So my issue is…I get it and I don’t. We learned the toughest lesson…no one is promised tomorrow, no one. I feel on some level I live my life differently with my boys because of it and on some level I fail miserably because I feel I can’t live the best life because Declan is no longer here. This doesn’t take one SHRED of love I have for Will, Brady or Cole away, they all have the same level of love from me but how does the best life exist without Declan in it? Not just for me but for all of us? Our lives are forever different…worse and better. Better because we were given the precious gift of life. Different because our appreciation grows from the ashes of grief. How do we live the best life through the ashes of your extinguished life? Is that ok, is that what we are supposed to do? If I don’t honor your life, does it make it less valuable? If honoring your life means stirring up the pain of losing you, is that what it should?

I am lost on the how. I know I will figure it out and I know you are trying to help me sweet boy…you’re all around me. Giraffe prints, butterflies, dimes, dragonflies, songs, smells, thoughts…I know you’re reaching out to give me a hand because I can feel you trying to help, knowing Mommy needs a lift. I know I will figure a way to walk this path, not sure when or even how, but I do know you will be along for the ride helping to guide me during this journey. This new unfamiliar, even unfriendly, journey. The one filled with so much love and appreciation for today…even as it is viewed through my tear filled eyes.

My dad called me earlier and I could hear it in his throat, that sound, I know you know it…the dreaded catch/hesitation. I heard it and my heart sank. Dad, what’s wrong…please tell me. My heart sinking…who has died.

And then he said it…I just read your last blog post. Ugh. My heart broke.

No one died…well at least no one “new”. It is Declan…the pain we’re all feeling. That last day you were alive 2 years ago was today. At 2:20am tonight…or tomorrow, however you tally time….you died.

He was distraught…as I’ve seen my Mother in Law…and Mommy and Father in Law. I felt awful…I feel awful. I/we hate their pain. HATE IT. We don’t want them to not call and share their pain…they should, but Stan and I have both lamented about how hard this must be for them. They lost their grandchild…how horrible. But they also have the added bonus of watching their child suffer. It breaks my heart to think about it….and they’re living it.

Declan we all love you so much. I know you are with us, hoping we are strong…but buddy…our hearts are breaking. You are missed. You are loved. I know you know this. It’s not just Mommy and Daddy…and Will, Brady and Cole. It’s our whole family. Our hearts are breaking tonight (and every night)…all over again, for you. We will love you and miss you forever.

Life goes on.

Nope, it can’t be…this must be a nightmare. We didn’t really see a CAT scan with a golf ball sized “something” in your brain. We didn’t get rushed in an ambulance to the PICU only to discover the something was cancer. We didn’t really watch you get wheeled away for brain surgery…BRAIN SURGERY. Oh my God, you’re a baby. This isn’t happening. You didn’t really endure all those major surgeries…we didn’t really sit there with wringing hands for all those times. Did we?

No it can’t be…wake up!

Did we really watch them inject chemo into your little sweet head, to your brain? We didn’t really become so accustomed to you throwing up from the chemo that it became a routine in our days. We didn’t really spend almost 3 straight months in the hospital with you? Did you really become that darling little boy I saw walking the Oncology floor with his Mommy in the green scrubs? No, you can’t walk…wait that couldn’t be you. You didn’t have your first wagon ride in a hospital with your IV pole in tow, did you?

No, it can’t be…wake up!

Was your first flight really to Houston, TX…so we could radiate the cancer in your brain? Did we really spend 6 weeks there in a cramped hotel suite between your countless procedures so we could spend time together as a family? Did Grover and his friends make you belly laugh like that from a hospital bed?

No, it can’t be…wake up!

Did they really say there was nothing more that could be done? What? What did you say? What do you mean? It was all moving in the right direction…shrinking tumors and vanishing spots. What do you mean the area we didn’t radiate because nothing was there is so filled with tumors that you can’t count them? What do you mean we have no time…not 3 to 6 months or less than a year like it is in the movies…no time left. What do you mean we have to tell everyone Declan is dying…tomorrow. Did we really stand there and watch everyone say good-bye to you? Did all those awful things happen?

No, it can’t be…wake up!

Did we stand by your coffin, stuffed with all your comfort items, and watch an incredible stream of loving people come pay their respects to you? Did our friends with tear filled eyes and no words on their lips, come and hug us so tight? Did we watch the faces of the nurses stained with tears come to see you one last time? Did we watch the faces of the families we knew from treatment watch in horror as the thing they fear the worst has happened to their friend? Did she really say in my ear through tears, “I don’t know you but I read about Declan and have prayed for your family and had to come.”? (my stomach is turning as I type this but that’s ok, this is a nightmare, right?) Did we really watch your brothers peer into your coffin and kiss you good-bye? Did we watch in horror as that happened? Did we really watch your grandparents shoulders sag and shake from the sobs as they peered down into your coffin? Did your aunts, uncles and cousins come kiss your forehead and lightly touch your hand for the last time? Did we really bury you?

No, it can’t be…wake up!

Did we celebrate your 1st birthday by crying over your grave?

No, it can’t be…wake up!

Do we really have to think about what we say when someone asks us how many kids we have? When we proudly say four boys and are asked their ages, do we silently hope we can get it out without a tear shed or make the asker of that innocent question uncomfortable about our loss? Did we really learn that stuffed animals aren’t the best things to leave at your grave and plastic toys stand up to weather better? Do I really sleep with the I’m 1! bear that sat on your grave for a whole year?

No, it can’t be…wake up!

Did I really just sign up Cole for pre-school? Just Cole? Did I really watch Cole ride the rides at the PWC Fair, alone, without his twin? Do I really say Hi Declan! to every butterfly and dragonfly and feel like it’s him? Do sunsets and sunrises make me think I’m seeing you smiling at me? Am I really sending out invitations for Cole’s 3rd birthday, not Declan and Cole’s?

No, it can’t be…wake up!

Do people think we’re over it? Is that why so few people mention you to us? Or is it that they have moved on…their life has gone on and you are just a baby that died almost 2 years ago. Are we not that poor family any more…you know, Declan’s family, the baby who died from cancer? Are we just the Carmicals another family from Ashburn…you know them, the one with the 3 boys?

No, it can’t be…wake up!

Is life really going on…without you?

No, it can’t be. Please, wake up…please, please, please let this all be a nightmare.