The snuggle that never was

I believe I’ve talked about Declan’s blanket here before. Actually, it wasn’t a special blankie bought for him by us or some other loving family member or friend. It is, in fact, one of those fleece tie blankets given to us by the hospital. It is the last blanket we held our baby in. It says ‘I (heart) Mommy’ and ‘I (heart) Daddy’ all over.

Declans blankie
Declan’s Blankie

I think I slept with it every night for the first 2 years or so. (I even took it on business trips initially until Stan pointed out how truly precious it is and what if by some chance it were to be lost. I was so caught up in having a piece of him with me, I didn’t really think through all that it meant.) I even cried the day I washed it by accident. I’m a little more (ahem) stable about it now.

I don’t sleep with it every night any more but it’s always right by my bedside, either next to Declan’s picture or folded next to it. The last few weeks, I’ve been sleeping with it more. These weeks leading up to today are pretty mentally taxing but really I just love having a piece of him to cuddle.

As I mentioned yesterday, the boys were at camp so Cole slept with me last night. (Not all together shocking if you know us … I’m a softie and would let the boys sleep with me every night but that’s another post and therapy session.)

I woke up at some point during the night with Cole snuggled up next to me and Declan’s blankie in between us. I was half awake but felt like this is what is should be … my two babies, snuggling with Mommy. I thought I would get mad at the fact that it was a blanket not Declan in between us but I didn’t. I felt a really strange sense of peace. I just knew he was there in between us and it felt awesome. I fell back asleep with a smile on my face.

Sure, I’m always a little upset about stuff like this because it should never be as I describe. Our life without Declan is what it is and while I would give just about anything for it to be different, I am learning to enjoy these moments for what they are … not what they are not.

That empty feeling

I dropped the boys off to camp tonight (just the older boys). It was a momentous occasion for Brady. You see this was the first time he was eligible for BRASS Camp. BRASS Camp is a camp run by the amazing folks at SpecialLove, specialove.org, for the BRothers And SiSters of children who are, have or died from pediatric cancer. Will has gone since the month before Declan died and has had nothing but great experiences. He loves it and has been waiting for the chance to share it with Brady. Brady hit the magic number on his last birthday, lucky #7.

We’ve been caught up in the excitement since the boys applications arrived and today was the big day! I was excited for them to have this experience together and, well, I guess I was focusing on the getting ready and coaching up Brady on being away from home etc. So caught up, I didn’t coach myself up on the fact that this is Brady’s first time away from home when he wasn’t with relatives. Ack!

As I sat in the parking lot getting ready to pull away, that feeling I have become all to accustomed too, returned to my chest. That heavy feeling. The feeling of loss. I know, I know … what’s with the high drama, Sherri? Yes, it sounds dramatic but it has similar tones to losing Declan. It’s that feeling you can’t stifle but also can’t do anything about. The connection broken, or better yet, stretched. Maybe that’s why my heart hurts. My heart strings, attached to all of my boys, are being pulled taut tonight (and every night since August 18th, 2010) because (some of) my boys are somewhere I am not.

It’s similar to what I feel with Declan. So many have asked and there really is no way to explain this feeling. This picture, recently posted by my friend at A Bed For My Heart, really hits the nail.

Bereavement

Frankly, this is as close as I want any of you to come to understanding this loss but I still want to try to help people understand. Kind of silly but on some level I think it helps … who you may ask? Probably just me but that’s one person, right?

I hear “I just can’t imagine”, a lot. I try to figure out ways to scratch the surface and tonight seems like a decent way. We’ve all had that experience where we drop our child(ren) off somewhere and as we leave that warmth in our chest spreads to heat, grabs hold and just sort of settles in. You try to will it away with deep breaths but its remains. That sense of discomfort in knowing, no matter how amazing the people you left your child(ren) with, they aren’t you. They won’t ever do it as good as you (even in all my imperfectness … I’m imperfectly perfect for them.)

The death of a child has its roots in this feeling. I will grant you … God is a pretty damn good substitute but he’s still not me. Nothing will ever be as good as me (or Stan) Even God. Sorry God, we’ve chatted about this … I know you understand my feelings on this topic. It lingers, never far from the surface, never really loosening its grip.

And yet, life goes on … just as it will while the boys are at camp … it will just be different, a bit unbalanced, until we are all together again. You can relate, right?

A visit with my sweet boy

Sunday is, typically, the day we head over to the cemetery to visit with Declan. Most times we go as a family and sometimes we meet up with different family members. (Hey weeds, in case you were wondering. You don’t stand a chance … Grandad won’t stand for it.)

Today, due to some miss cues and a basketball game, I ended up going by myself. I haven’t done that in a really long time and wish I could have stayed all day. The weather was comfy (for early March in the mid-Atlantic), the sun was shining and my coffee was steamy. I proceeded to prop myself up against the little tree that sits next to our plots (ultimately, Declan will be between me and Stan). We chose the location because of the little tree; it was new, like Declan, when we came looking for his final resting spot. We just knew it was the right place for us to be with him, to share the beauty of this little tree as it grows. Kind of poetic, in a not so lovely sort of way, considering we were burying our baby. We decided we would enjoy its shade in the warm, summer months and its changes during fall and spring. It even has a small nest in it … the circle of life.

As I sat there chatting with Declan, I noticed the birds chirping. It struck me because, well, it has been damn cold here and I just wasn’t thinking the birds should be back from their treks down south. And yet, they were. I let the sun warm my face as I closed my eyes and enjoyed their beautiful melodies. I felt warmth growing but not from the outside. Rather it was coming from the inside. The connection, so strong and never broken, between a Mommy and her baby. It was just lovely.

I lingered as long as I could but had to leave to make sure we arrived at basketball on-time (Stan, I know you’re laughing … I swear I tried to get there on-time.!) Anyway, as I was pulling away in the car, I felt the urge to listen to some tunes. (Sidebar … I typically don’t listen to music on the way to the cemetery when I go by myself. Not sure why, I just don’t.) So I turned on the radio to find Lynyrd Skynyrd’s Freebird on but it was the lyrics that had me catch my breath. “I’m as free as a bird now.” It all came together for me. My sweet baby, letting me know he is free. He is free and, most of all, he is ok. I love how he lets me know. It’s hard to explain why I know it’s him, I just do and it makes me feel good. It makes me feel good to know he’s always with me and that he knows when I need a little extra from him.

He’s not here in the traditional sense and, well, it blows but I love that our relationship still grows. The bond that neither time nor distance can break. I love you, baby.

So I packed up your stuff …

So I packed up your stuff. It was a loooooong over due task because it was everywhere in mine and your Daddy’s room. It felt so bad to see it not being honored as it should and yet it felt so bad to think about packing it up. I was right, it was horrible.

I guess I wasn’t prepared, I’m not sure why, for what it would be like. I didn’t think it through and because of it, I’m crushed all over again. I mean broken. Hurting and raw all over again. It needed to be done but it put a world of hurt on me baby.

I did ok at the beginning because I started with boxes I had previous put together. No big deal. I then moved to stuff I hadn’t originally put away and BOOM! BOOM! BOOM! I was right in the middle of an emotional mine field. I wanted desperately to stop but I also wanted to be with you, I felt close, so I kept walking through. I also knew if I didn’t finish it would sit like it had for the past 3 years for God only knows how much more time. So I continued.

So what wasn’t I prepared for? Remembering. Not just remembering the moments but getting to touch the remnants of you while reliving those memories. My God, you were so little. Just a baby. Strange, while I know you died as a baby, you live on in my mind and you seemed to be so much bigger because of what your life grew into. It seemed like you were bigger because of how amazing you handled your tiny life with cancer and how much you meant to so many.

So when I found your tiny little blue sweater vest from the now infamous beautiful photo of you from Valentine’s Day … the one still on the header page, the one we used to send with your thank yous, the one people still tell me hangs on their refrigerator or on their office wall or in their child’s room … my breath was gone. There it lay in my hand, the soft cotton resting against my skin and my heart stopped. The vest so represented in the stages of your life by how the picture used. I was frozen as the mind flood of memories came washing over me and all I could do was hug your little vest and cry.

I cried like a baby over the little baby that was you. Over the little baby who’s life was forever altered by cancer. Over the little baby we never got to see grow up … never say a word, never really get to sit up unassisted for long, never take his first steps, never share a birthday with his twin, never, never, never, never. Too many never’s to ever count because they wash over me every day, new ones that I hadn’t considered yet … like at the local high school football game last week when I thought about all the great times I had in high school and how you’ll never get to experience that or as I watched Cole master riding his bike. Never.

So I shook myself out of it and I pressed on as the tears flowed, finding tear-free moments and a few smiles as I remembered how sweet you looked in the outfits as I gently folded them away. I was doing ok and moving through when I peeled back a layer to find the matching outfit to the one you were buried in, the darling little embroidered Dumbo onesie with the velvety soft ears; and once again the stabbing pain of loss came crashing down on me. I loved those little outfits and couldn’t wait for you two to grow into them … you were going to look so cute. Darling. But that wasn’t to be because as the tag fell from the neckline of the outfit, I remembered you and Cole never wore them together. In fact, Cole never wore his … and you will wear yours forever. I pressed it gently out against my torso and hugged it tight, trying to remember how you felt and cried loud choking tears over you.

I was able to regain myself and as I gently laid the matching Dumbo outfit down, I steeled myself for the rest of the task at hand … boxing up the emotion of loosing you again, battening down the hatches of grief for another time. Back to reality. The reality of life without you. Back to stacks of lovingly packed bins of your stuff, glimpses of you, until some time in the future when I’ll want to remember again how small you were against how amazingly huge your life is now.

Should and shouldn’t

You should be here.
You should be starting preschool today with your twin brother.
You should be dressed up, in a shirt I’d never get you to wear normally, for your first day pictures.
You and Cole should be sticking your tongues out at me in those pictures out front.
I should be sandwiched in between my two babies, smiling with excitement over their first day.
You should be in the raccoon’s class too.
You should be 4 years old and 18 days old today.

I should be happy to watch Cole run into his first day of preschool, giddy with excitement.
I shouldn’t be a weepy, emotional disaster.
I shouldn’t make the other Mom’s and teachers cry on their first days because I’m missing you so terribly and cannot control my agony today.
I should be able to enjoy every moment of my kid’s lives without it being measured (internally most day, external on some) by the searing pain of your death. (Buddy, we do enjoy them because you taught us to appreciate them … but it still hurts so deeply that you’re not there with us to enjoy it too.)

You should be playing soccer tomorrow running around in your tiny little cleats and shin guards.
You should be out there picking your nose or ignoring your coach and playing in the dirt or looking at the dragonfly fly overhead … instead of me thinking that dragonfly is you coming for a visit from Heaven to watch your brother play.
You should be standing next to Cole driving me nuts to go play on the playground instead of watching your big brother play flag football.

I shouldn’t have to agonize over which family picture to send in every year when your brothers are asked to send in a picture of their family.
I shouldn’t have to worry that my boys will never truly know how amazing you were.
I shouldn’t have to worry that Cole might actually think you are a dragonfly or the moon or childhood cancer gold ribbon instead of what you were, his twin brother.
We shouldn’t have to do this. No one should.

We shouldn’t regret stuffing your coffin with all your Sesame Street guys, your beloved Sophie, your blue “bear”, your angel blankie and countless other things to make your final resting place comfy because we want more tangible something’s of you with us now.
We shouldn’t have to come up with weather proof birthday gifts to lay on your grave.
We shouldn’t have had to lose you.

You should know we try really hard to fight for all the other kids in your memory.
You should also know how much it hurts to feel like so many have forgotten that they said they would do anything to help.
You should know those who continually show up hold a very special place in our hearts.
You should also know watching other families go through what we did with you is incredibly painful, indescribably painful but we do it anyway because so few people are willing to stand beside us and fight for what is right.
You should know our family will never stop fighting to raise awareness and funding. Never. No matter what the emotional cost to us.

You should know you reside in our hearts.
You should know you made us better people, even though the annoyances of life and screaming boys and temper tantrums and, well, life makes it hard some days.
You should know we draw on the strength you showed us during the 162 days of your cancer treatment (a little less than half of your 357 days with us).
You should know life without you will never seem complete.
You should know we try to live each day as completely as we can because of you.

You should know nothing will ever make this ok.
You should be here.
You should be here, with us.

Wait for Mommy, Declan!

Ugh. It’s happened twice over the last 2 weeks and it’s, well, awful.

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.

What would you want them to know?

My thoughts are swimming in the awfulness that occurred in Boston yesterday. I just don’t understand how any human can treat another with such violence. Maybe it’s because I’ve seen the life leave someone I love dearly so I know the pain death can inflict on someone or maybe it’s just that I don’t understand how anyone could want to inflict damage on any one.

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.)

Why?

I/we had a fabulous weekend. Truly, so much fun. It was insanely busy with 2 soccer games (Brady & Cole), 1 flag football game (Will), 1 trip to Wegman’s for groceries, 1 trip to Costco for mass quantities of chicken/soap/insert the staple here, 1 fun night out with friends filled with some awesome Declan chatter (thanks for babysitting Nana and Grandpa!), 2 cook-outs with friends, 1 awesome, awareness-raising Journey 4 A Cure event/fundraiser (thanks to Primrose Ashburn!)…it was a busy and fun weekend and I’m sure I’m forgetting something. It was the perfect family weekend (although we were more than ready for bed on-time last night).

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

I remember. 2 small words. Ok, one small and one big one. I remember. Pretty straight forward, nothing complex about that statement … until you stitch two additional words into the sentence.

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.

A brothers love

There is so much thought and consideration given to Declan and Stan and I in the wake of his death; but it is my sweet sons who get lost in the shuffle…I include myself in that category. I am certainly caught up in my own and while I try to be there for and help my sweet boys, I know their grief runs differently than mine so I am careful to not create something that is not there.

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.