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.

Survivor

Yes, I watch Survivor…I have for years. Love me or hate me for it, it’s ok I’m comfortable with it. There is just something about it, how the relationships build and break, the joy and sorrow. By far my favorite show is the family show, the one where they bring a family member to join the Survivor tribe member for a challenge. I love it. I love watching their jittery bodies as they wait to hear their name called and find out who has come from home to their far away island. You can feel the pent up emotion, feel the desire building, feel their hearts swelling with anticipation. But it’s the moment they hear their name and the name of their loved one…that’s the moment I love. I cry every year…and tonight was no exception.

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.

The journey

I’ve been silent lately. To be honest, I haven’t been doing well. I am struggling coming to terms with our new life and the struggle has been hard since the end of July. I feel the need to say my instead of our because I don’t want to push my thoughts outward but I also know this journey is not about me…frankly, it’s not about Declan anymore either…it’s about our collective journey.

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.

The call

You all know what I’m talking about…the call you get from a family member, typically a parent, about someone who has died.

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.

Please wake up…please, please, please let this be a nightmare.

Wake up. Wake up! It’s time, this nightmare has gone on long enough. It’s too much to absorb so it’s time to wake up. Did this really happen? Has it almost been 2 years since we held you? It can’t be. I mean I look around and everyone is normal. The same things that went on before March 9th to August 18th 2010 are going on. There is no change. Life is the same…so this has to be a dream, right? Or is it the manifestation of that horrific phrase, chirped so cheerily by folks…Life goes on! It never felt so horrific before but it sure does now.

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.

Waves

I had the opportunity to sit on the beach alone the other day (I know, right? How’d she pull that off? Lots of help!). The area of beach (long with a sandbar) and tide was such that I could put my chair on the shore and the waves were washing underneath me. I was reading and enjoying feeling the waves wash over my feet, the sun on my face and the ocean breeze flowing over my body. My perfect place.

I love the beach, the sounds, the smells, the warm breezes, the feel of the sand under my feet or on my hands as I lazily scoop it and watch it fall through my fingers.

As I read my book, I kept looking up to enjoy the beautiful world around me. Kids laughing (No, not my own…mine were back at the house, in the pool. The horror of it all…the beach only 100 yards away and they want the pool. I have not counted this as a fail in the Mom column yet because I feel I have time to right this tilted ship.), pelicans racing inches above the surf, the sand under my feet and of course, the waves. I kept putting my feet up and watching the waves wash around them, enjoying the feel of the salty water as the tiny waves which had drifted across the sandbar reached my feet, some only inches high.

As I repeated this act, I turned my gaze to all the waves around me. The “real” waves were breaking off the sandbar many feet in front of me. Big ones, the tide was coming in. As I watched these monster waves (they were really big!) and the tiny ones washing over my feet, I was struck with another way to convey the feelings of grief or more specifically of missing Declan.

Like the never-ending stream of waves marching towards the sand, so is our life since August 18th, 2010. In the beginning certainly we were in the throes of the worst hurricane or the perfect storm (to steal the film’s title)…waves everywhere around us, too tall, too many, crashing over us barely giving the opportunity for us to catch our breath before another was upon us. Like the body surfing of my youth when you catch that perfect wave…just a few seconds too early and the wave grabs you and tosses you like a rag doll. You struggle to find which way is up…as you roughly bounce off the sand below, tumbling below the fury of the wave breaking above you…finally finding your feet and standing up through the surf, sputtering for air as yet another wave of equal might crashes over you. Giving you that tiny moment of ok before unleashing its fury yet again.

As time goes on the waves become less harsh but you never know what type of day it will be with the waves…just like at the beach. ‘What’s the surf like today?’, you ask the lifeguard as you come over the dune to catch the first glimpse of the surf for the day. It’s not like you will turn around and leave…of course not, you’re at the beach! At the beach you get what is served up…calm, rough, strong under tow, it doesn’t matter. It is just what you will be dealing with today.

As I sat there, enjoying the little waves and watching the giant waves crashing at the break I realized how similar our life is to the unrelenting march of the waves. Have you gotten over it? Are you better? No. We will never be over it or better. Like the waves on the beach we deal with the death of our sweet Declan, every day. As time has removed us from that horrible last moment of life with Declan, the fury of the waves have diminished but they still come. Some days we are treated to light lapping waves like those off the sandbar or at the edge of a lake. Peaceful and calm but still the gentle reminder while other days the waves are crashing overhead and the rip current is pulling at our bodies…we struggle against the weight, the pull on our hearts. As I watched people battling the breaking waves as the tiny waves lapped over my feet, it also reminded me how each day is different for each of us and even in the moment we are battling different waves of grief, of memory, of love. But it is there, every day. It will be with us every day, like the waves.

Like the ocean and its waves there is a certain peace (at least for me) in knowing the waves will always be there, knowing my soul will always be connected to the tiny being who’s life I saw drain out of his body less than two years ago.

What was it like?

I watched a M*A*S*H episode the other night where Charles Emerson Winchester, the third (I really love this show) has a brush with his own mortality and is reminded of the death of his brother when he was little. He becomes obsessed with death and understanding what happens when you die; asking those around him, awkwardly so, what it is like. Of course, my mind started down the familiar path it has gone down so many times since the earth shattering moments around 2:20am August 18, 2010. It’s remained there and I can’t stop thinking about it.

Certainly it is something I will not understand in this lifetime but that’s the thing about the unexplained, it seems to beg the answer to the question so much more than the easily understood. It is this thought that has taken root again in my head, again.

What was it like?

What is it like?

In those moments of sweet release from your tiny body as it was over taken by the cancer…was the peace of your passing fractured by the screams of our torment in losing you? Are the white hot flashed of grief followed by a joyous memory orchestrated by you to help us survive? I feel you around me, a lot. It makes me happy and sad; happy because our lives are still intertwined, sad because of how they are intertwined.

I sometimes think if I could die (stick with me here people) just long enough to see you and know you were ok…to get some sense of the world you live in, it would help. But would it? Could I lose you again to ease the confusion in my own head? Certainly it wouldn’t be what my family needs. But would knowing help soften the hard edges?

It’s not just me either. Brady and I were talking one night recently at bed time, as we often do, and he turned silent. I know he’s thinking about you when he does this. What he said made my heart shatter and in an instant draw a different and sad connection with him.

“Mom, I want to die.”
(silence)…in case you forgot, Brady is 5.
“You do, huh? Why?”
His reply came in the small squeaky child’s voice, straining to speak through tears, “I want to die so I can go see Declan.”
(heart crushing sense in my chest…and a decision to make, tell the truth or pretend I don’t think the same thing?)
“You know what buddy? I do too. I’ve wanted to die and make sure he’s ok just like you.”
more silence
“Do you remember the thing about heaven we’ve talked about? Once you go, you can’t come back.”
“Yeah, I know but I miss him.” …with tear rolling down cheek
“Me too. I would miss you as much as we miss him if you died too. And you know what? I wouldn’t get to see you any more either.”
more silence
“Do you think maybe we should stay here for each other and remember how much we love Declan, and each other, everyday? Does that sound like a plan?”
“Ok, Mom.”

I’ve debated relaying that story but since I’ve watched that episode of M*A*S*H and mulled over what it meant and brought out in me, I realize we’re each dealing with these landmines every day. What is it that makes one day/hour/minute/moment easier or harder than another? Is this how life was intended? How is it that I am talking about dying with my 5 year old to gain a sense of relief from the grief of missing Declan? Sadly, I know these feelings don’t exist in a vacuum in my home. I know they have invaded the fabric of our extended families and friends as well.

Unfortunately, I don’t have any answers. For you or for me. I struggle with these thoughts daily and imagine I will for my lifetime. I hope I operate in a vacuum of grief, hoping the pain of my grief exists only with me…not for selfish reasons but because I can’t bear the thought of knowing it resides in those around me. But I am wrong. I know by looking in their eyes that I am wrong.

If I were able to answer the question, ‘What was it like?’, would it help?

If only…

Holidays are the hardest

Everyday is hard but I think the extra time and excitement around the event really cause me to struggle with how much I miss Declan. It’s tough to type that because I truly struggle everyday but some days just ignite a white hot, fire of missing.

I feel the need to say, life is fine and my boys are amazing and wonderful and enjoying the things in life they should. We were at the pool earlier and Cole figured out how to “swim” today. Truth be told, he’d sink like a rock without this body floatation thingy handed down from Brady during our time in Houston but he doesn’t know and he’s proud of his accomplishment (his smile is like pure gold)…he doesn’t know how much more proud we are for him. While what I write is typically about Declan because this is, afterall, the journey of his life and our life without him, I feel the need to comments about my boys because I’ve watched other people comment on other family’s posts/blogs/caringxx wondering about their “other children”…for the record, I think that’s bull because they have no idea how much we love and would do anything to protect our kids…all of them. But I digress.

So on our way home from the pool, I turned to the 70s station (I love 70s music!) and a song from Bread came on, Everything I Own. Truly I know a lot of the songs that make me think about Declan (any my boys…Stan included) are love songs. I mean, doesn’t that seem right? Isn’t one of the greatest loves in life the love we have for our family? I’ve always liked this song and, as has happened on so many occasions since Declan died, the words spoke to me differently. They were the words I’ve said a million times in my head, in my dreams, since Declan died…I would give anything I own, just to touch you once again. The finality of human contact truly is a hurdle that has amounted to scaling an insurmountable wall…kind of like the one in those American Ninja Warrior trials but much bigger. (Did you forget? I live with all boys. Ok, I like the show too. I admit it.)

The words aren’t just for what we’ve lost and ache to be with again, it speaks to the here and now. The ones right in front of us, who drive us nuts…especially on days like today when we’re supposed to get together and enjoy our time with family and friends…with the same ones that drive us nuts. What if they weren’t here? We’d ache for them and wish it could be different. Wish they could be here. Wish they could be here so we could hug them, love them and tell them how much their life means to us…how life would be different without them.

I copied the words below. There are so many people who fit these words in my life, and probably yours too.

Declan, I miss you. I would truly give up everything I own.

You sheltered me from harm.
Kept me warm, kept me warm
You gave my life to me
Set me free, Set me free
The finest years I ever knew
were all the years I had with you

I would give anything I own,
Give up my life, my heart, my home.
I would give everything I own,
just to have you back again.

You taught me how to love,
What it’s all, what it’s all.
You never said too much,
but still you showed the way,
and I knew from watching you.
Nobody else could ever know
the part of me that can’t let go.

I would give anything I own,
Give up my life, my heart, my home.
I would give everything I own
Just to have you back again.

Is there someone you know,
you’re loving them so,
but taking them all for granted.
You may lose them one day,
someone takes them away,
and they don’t hear the words you long to say

I would give anything I own,
Give up my life, my heart, my home.
I would give everything I own
Just to have you back again.
Just to touch you once again.

Reflections

As the minutes tick away on this Mother’s Day 2012, I am overwhelmed with thoughts. For myself, it has been a struggle. Today is a day to celebrate and remember the Mother’s in our lives so of course I have spent time today celebrating the Mother’s in my life (my own Mommy is top of the list, of course!) who have helped shape the Mother I have become.

Whether I learned their lessons as a little girl holding onto the wise, weathered hand of my Grandmothers or as a young adult learning the ropes of life through the lives I witnessed around me…Mother, Sister(in-law), Aunt, Friend, Grandmother, Cousin…and even as the tears fell freely from my adult eyes, pooling onto the blouse draped across my Mom’s shoulder, knowing some of life’s lessons are not meant to be understood. I realize I have been blessed. I have been blessed to know and be loved by some truly amazing Mom’s. The gifts which have been shared with me, whether you realized it or now, have impacted me. They are woven into my soul.

These events, whether trivial or monumental, would have occurred in some way because I exist. But one thing in my life would never have happened were it not for 4 amazing reasons…1) Will, 2) Brady, 3) Declan and 4) Cole. That thing? Motherhood. I was blessed to be given the honor of being their Mom. Think about that for a second, the stars aligned and in an instant, I became a Mom. I mean, how cool is that and how lucky am I?

That’s the root of it. I feel incredibly honored (even though exhausted…even exhasperated some days) to get to walk these shoes of mine…
…the joy of welcoming a bubbly blonde headed whirlwind into my world
…the moment of realization that he was ok with me being his Mom…what an honor
…through the years of wanting and praying for the experience
…to the joyous sight of the little blue line
…hearing your heartbeat
…to the realization, that funny fluttering feeling in my tummy…was you
…the pre-birth chats and walks
…hearing, “It’s a boy!” and seeing your face for the first time
…the daily grind…puhlease stop teasing him
…the daily joys…”Mommy, I’m glad you’re my Mommy.” (insert pride filled, watery eye Mommy here)
…horrible discoveries and the sleepless days and nights to follow
…squeezing in the fun
…letting go for the last time
…holding on harder than ever before
…enjoying the little things more because in the end, they are the big things

I’m a Mom…I’m their Mom. I hate (with ever fiber of my being) some of the cards I was dealt as a Mommy but I have been enriched in so many amazing ways by having been given the honor.

So tonight, I’m sad for what I lost and thrilled for what I have. I have 4 amazing boys. It’s not conventional, it’s not how I dreamed it (at all) but in the end, I am blessed. I am their Mommy.

I love you, Will.
I love you, Brady.
I love you, Declan.
I love you, Cole.

You are my dreams come true.