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.

You know that feeling?

You know how you feel. You know that if you could just get it done or get on the other side of it, everything will be better.

It hit me like a ton of bricks while I was having a fantastic, I mean epic pity party today…

Losing a child is like that project…except the project has no end. The never ending project. There are no steps to take to get over it. There is no other side (at least not in this life). It will be there, forever. Tugging at you. Yes, there are better days than others (just like the ignored closet, some days it doesn’t matter…other days you want to throw in match and start over) but in the end…well that’s just it, there is no end.

The never ending project of mending a broken heart…missing a life that should still be. Longing to see a sweet face I can no longer touch.

Stan and I had a few days without the boys while they took a mini Spring Break vacation to Nana’s (thank you Nana, Grandpa and Jill!)

I realize how much the energy of my kids helps keep my mind ‘safe’ from the rabbit hole of grief. Within a few hours of them leaving I felt the walls of my grief starting to close in. It’s not that it isn’t there all the time because it is. It’s important to note…contrary to popular belief, it doesn’t get better. You learn to deal with it differently but the loss of someone important, someone so dear, someone too young to be gone is something that will never get better.

There are many times throughout the day I feel the grip of grief grabbing me by the neck. Yeah, grief is like that, it silently sneaks in and waits for the moment to grab you like an intruder in the dark…the kind with nothing but harm in mind. But the kids…they’re a dynamic and a powerful draw back to reality. The cascading giggles of joy from one of our boys washing over us or the shriek of battle over some toy or turn unrelinquished…good or bad, in that moment we are needed; needed to enjoy the moment or to pull on the black & white referee shirt and get down to what needs fixin’. In those moments, grief’s outstretched arms are too late and have to pull back in the shadows until another moment.

I realize I’m/we’re the Mr. Magoo’s (I am sooooooooo dating myself with this reference) of grief, unwittingly side stepping it’s outstretched arms yet another time. Of course nothing ever really bad happens to good ol’ Mr. Magoo but it’s the best reference I can come up with.

I could use the horror movie reference, for those who may not know sweet old Mr. Magoo, where the soon to be victim is able to side step their fate by choosing to go up the stairs rather than down or one room over another. All they are really doing is postponing the inevitable. I truly didn’t realize how much their wonderfully, beautiful little lives keep the vice grip of grief from grabbing a choke hold on us much more often than it actually does.

It was really overwhelming for me, this reality of the rawness of this grief, repeated so many times over such a short period of time. During dinner (ah yes, we went out…a real adult like dinner!), I told Stan what I had been experiencing and it gave us the opportunity to talk about it much more freely than we do most days or weeks for that matter. Seems like such an odd statement but having someone in your regular sphere who gets this world is truly complicated by the fact that we share the same loss. If the rawness for me is this close, it is equally so for Stan. Couple that we 3 darling little boys with bright blue eyes staring up at us, well it doesn’t really make for lots of open discussion opportunities.

It was a great conversation. We laughed, we remembered, we cried. Our poor waiter surely thought we were escapees from reality. But it was wonderful. We talked about how strange it all is and things we (ok, I…I’m really terrible about looking back and wondering what if) wished we’d done or handled different. Like, why didn’t we ask someone to bring a good ink pad so we could get really good hand and feet impressions? Ugh…this one kills me. So silly and yet so important when all you want is a piece of what you lost. I digress. How much we had to process with so little knowledge and time. How much we believed. How much we loved 4 little boys as much as we could during something so horrific and terrifying. We talked and shared and at one point, Stan looked at me with tears in his eyes and said, “I just miss him.”

And that is it. I just miss him. All the heartache and wondering what if and hanging on to the physical things are all done in an effort to fill that void. It’s such a simple statement and through all of this, it is the key piece. Missing something so dear, missing sweet Declan. Wishing life could have been different but knowing his path was written on a level I am not privileged to understand at this time and waiting for the time we’ll get to see him again. Until then…

I just miss him.

I realize how much the energy of my kids helps keep my mind ‘safe’ from the rabbit hole of grief. Within a few hours of them leaving I felt the walls of my grief starting to close in. It’s not that it isn’t there all the time because it is. It’s important to note…contrary to popular belief, it doesn’t get better. You learn to deal with it differently but the loss of someone important, someone so dear, someone too young to be gone is something that will never get better.

There are many times throughout the day I feel the grip of grief grabbing me by the neck. Yeah, grief is like that, it silently sneaks in and waits for the moment to grab you like an intruder in the dark…the kind with nothing but harm in mind. But the kids…they’re a dynamic and a powerful draw back to reality. It can be the cascading giggles of joy one of our boys washing over us or the shriek of battle over some toy or turn unrelinquished…good or bad, in that moment we are needed; needed to enjoy the moment or to pull on the black & white referee shirt and get down to what needs fixin. In those moments, grief’s outstretched arms are too late and have to pull back in the shadows until another moment.

As if on cue…the soft cries of Mommy are coming from Cole’s room…I guess the end of this will have to wait until tomorrow. Good night my friends…I have a little boy who needs his Mommy.

Today I was treated to a few beautiful views and my thoughts were awash in Declan. Smiling back and forth, we were…enjoying a little quiet time together. Our little stolen moments.

The clouds then overtook the sun and my little visit was over. I’ve come to enjoy and look forward to these moments, they make me feel like we’re connecting in a special way. Our little “sun chats”. I got sad today after it was over and, frankly, a little mad. I’m talking to clouds and rays of sunshine instead of my sweet boy. So unfair.

So I’m having a little pity party for myself and Declan tonight. Feeling so very cheated…feeling so intensely the loss of this amazing little life. So much left undone, so much left unknown. What would his voice have sounded like? When would he have walked? What would have been his favor color? Would he and Cole have developed their own special “twin” lanugage? Too many unanswered questions, a life not lived. A life taken far too soon.

The sunsets I enjoy with Declan are not at all dissimilar to his little life…both shining and beautiful works of God. Pure in their intense beauty and never long enough to absorb all of its beauty, all it could be. But long enough to know you’ve witness something special, something you wish you could hold onto forever…like the tiny little hand of my sweet Declan.

So small, so completely unaware of what was happening…where his life’s path was leading him, leading our family. I was introduced to a hero that day, my son. Over the days, weeks and months to follow we would come to see what a true hero is, how brave even the littlest human can be.

For today though I’m remembering my sweet baby, looking so small in that big bed. One of the indelible moments in my life.

During her interview she remarked about how instinct took over and said something along the lines of a mother would do anything to save her child. (For all you Dad’s out there, I know this is not a trait unique to women…gotta give props where props are due!) As I absorbed her statement, I was struck with an image that I have been wrangling with all day. We felt the same instinctual protective air rise around us when we learned about Declan’s cancer. This is where my image comes in. You have this intense need/want/desire/will (you get what I mean) to protect but as you go running towards your child to wrap them up in your protective arms; you run smack into a glass wall just inches from your child. You can’t reach them to help. You are helpless stranded on the sideline wanting to desperately to make it right but knowing you cannot.

It wasn’t just Declan either. It was Will, Brady and Cole. How to protect them from having to know this horror at such a tender age? How to give them hope so fear does not envelope them when they visit their brother, so they can be boys…brothers, together again if only for a few hours until it’s time to go.

It was a daily struggle to make decisions against your will to protect because in attempting to protect and save a life, the decisions were made against our instinct to protect. Please know I don’t mean we regret ANY decisions we made, we do not. What I mean is the world you are tossed into keeps you at arm’s length from the nature of instinctual protection…in order to protect, you have to harm or agree to treatment that has an incredible ability to hurt while it heals. The glass wall…SMACK!

There are so many levels of pain felt by a family dealing with childhood cancer. I was reminded today of what it’s like to have your instinctual ability to protect your children from harm pulled away from you by the biting and intensely strong winds of a the childhood cancer tornado. Each new bit of horrifying news, the treatments, the unexpected side effects, the crying you can’t fix…a piece of splintered wood, tearing at you as you attempt to protect your child from the unimaginable horror surrounding him. Hoping he will come out unscathed…knowing you will never quite be the same again, whether he does…or God forbid, doesn’t.

I have donated blood but never regularly, and never platelets. I didn’t understand how vitally important both are to health and welfare of those in cancer treatment or simply to those in need of the life giving and saving properties. I mean who here can go a few minutes without some good old fashioned blood pumping through their veins? Exactly. Until you’re faced with the reality of what that can mean to yourself or in our case our sweet Declan, you probably don’t give it much thought.

Prior to Declan getting sick, I really didn’t realize how important the blood supply is to people with diseases. By that I mean, I thought of blood being used more for accident victims…yes, I’m a sad product of lots of tv…to replace blood lost due injury or e gads! malicious wounding!

In the hospital I realized just how much more it is used to help support those with life threatening diseases. For cancer patients, the very treatments used to help cure are extremely harsh on the body. Blood and platelets transfusions help replace what is killed off during treatment and strengthen those receiving its life giving gift. It was truly amazing to watch color return to Declan’s kissable lips and his energy return almost instantly after receiving his transfusions. I told myself I would give back. I would make it a point to pay forward what someone had done for my son. I did so this past week. Geez, Sherri…why so long to get there? It hasn’t been for lack of want but life always seemed to get in the way. Ironically, the very reason to donate is the reason it took so long. Simply put, life.

I wondered how I would handle myself, knowing what it meant to me and my memories of Declan. I was sure I would dissolve into a hole of missing Declan…wanting to desperately to be giving for him, not in memory of him. I was feeling a little of that emotion start to take its hold on me when I was waved into pre-screening room by this woman with a brilliant smile that lit up the room, Susie. My new dear friend, Susie. We started the interview and she commented on my necklace with Declan’s picture I wear…and then she said, ‘Is that Declan? I prayed for him and your family…I still do.’

I have to say this has happened a few times to both Stan and I; it is singularly the most humbling and heartwarming statement. I care about your son and your family…I remember. It is where again the words ‘Thank you’ fails to truly convey the depth of gratitude.

It wasn’t just that, I would have liked her anyway. She was warm and friendly. The fact that I felt Declan’s hand in helping his Mommy through was a plus. (Susie, I think your sweet boy was looking out for you by bringing us together. You see, Susie and I share another bond, she has also lost an infant son. Different circumstances but it doesn’t matter.) She made the experience wonderful and something I am know will become part of my life.

Second to blood donation was giving back to the NICU and the folks who supported Declan and Cole in the first weeks of their life. In the life of a NICUer, our boys were very fortunate. Their stays were not extremely complicated…it didn’t feel that way at the time but in learning more about other’s experiences, we were very blessed.

The NICU is an amazing and scary place all in the same breath. There are these amazing little humans so tiny…fighting. They are supported by the loving nursing staff, they are truly amazing in how they work with the babies and then gently work with the frazzled and nervous parents…scared and unsure of what to do and how to manage the situation they find themselves in. No one is really prepared for that world; and the nurses…not unlike the nurses on the Hemoc/Oncology floor…are angels on earth.

I still have the two tiny little Ty beanie bears, the blankets and name tags for Declan and Cole, lovingly given to them by the NICU. This weekend I took part in a volunteer event to make blankets and name tags to go above the isolettes in the NICU. Again I was a little nervous when I got the hospital…different hospital, different memories so I wasn’t sure what to expect. Again, I was met with smiling faces and a warm inviting atmosphere. There was a lot going on so it allowed me the opportunity to get right with my emotions and remember how the things we were making brought me such joy. You mean this lovely blanket is for us to take home with us? As I worked on the isolette name cards, I remembered those days and the wonder we felt over our boys. 33 weeks but fighting strong. Oh my, how awe filled and prideful we were of each accomplishment. It was a wonderful remembrance.

I met another Mother who lost one of her twin sons. We shared an amazing conversation remembering our boys and just talking to someone who “gets” it, especially the twin thing. I shared with her my desire to want learn to sew so I could also pay forward the blanket we last held Declan in; the one I now sleep with every night…it just somehow makes me feel closer to him. I kept thinking while I was there about how great I felt helping and how amazingly comforted I felt on the receiving end.

In the end, I worked up the courage to bring some blankets home with me to finish. (Stop laughing…those who truly know me are heartily laughing at the thought of that I’m sure!) My Mom, God Bless her…it only took 45 years for her to get me behind a sewing machine…helped me and I am proud to report I completed my first blanket tonight. It will be the first of many I know.

I hope you never get a blanket I make or the blood and platelets I give but I will continue to do these things to honor Declan and to pay forward the small acts of kindness which mean so much to us now.

I had heard others say the second year is worse than the first, and thought how can that be? Isn’t it supposed to get better? I should say, better is a relative term when used in the context of losing your child (or anyone for that matter). It will never get better. Simply put, there is no better than Declan here.

I think that’s why the second year is tougher than the first…I think it’s why the Dad in one of the grief groups for parents we went too was still sobbing after 5 years…it doesn’t get better. It just is. ‘Is’ is the worst possible thing. The thing you have said, “Oh that poor family.” or “Those poor people.” or “Not that sweet baby!” about in the past, gone home and prayed you’d never be those people; has happened.

That’s where year number 2 hits you squarely in the face. The shock has worn off, a bit, and the reality of life has begun to seep back in. Life goes on. No more true words. Not really rocket science but when the ringing in your ears is still so loud from the pain of loss that you almost can’t bear to paste the “I’m ok” smile on your face for another day; those words are like a hot knife cutting through butter. Life goes on…without you. The reality is like jumping into an icy bath (for all you Tough Mudders out there, you know what I mean…that obstacle was the worst, but I digress.)

I’ve grappled with the why, like so many other unanswered why questions since that fateful March 9th. I’ve come up with some ideas but the questions, feelings and ideas change like the wind etches new patterns into the sands of a beach. I think what I’ve really learned is there is no answer, at least not one that I’m privy to here on earth. I am forced to come to terms with the fact that there are no answers for why we lost Declan and countless other families have lost their children since August 18, 2010.; simply understanding that fact and taking it to heart are two very different things. So I will continue to write (hopefully more often) in the hopes of reconciling my thoughts with the reality of our days without Declan.

We have the fondest memories of our one and only Valentine with Declan. I thought I’d share some of them with you…

Me and my boys in their little Valentine’s shirts I bought for them.

Declan and his brothers, one of the last pictures of them together before he was diagnosed.

Declan and Cole…brothers and twins, a relationship neither will ever have the chance to know (at least not the way we dreamed of).

I am still pretty angry about what we have lost and hurt…oh so hurt. But today is not about remembering lost love. It is simply about love, and let me tell you about love…it does not wane, it finds a way through. Love finds a way to remind you just how lucky you are to have it, how lucky we are to be loved and to know love in our lives. No matter how short the period of time we love, once love seeps into your heart…it resides there. Tucked in all comfy among the warm fuzzies of our memories of love.

Love does not fade. Ah, sweet love.