Category Archives: Mommy’s & Daddy’s Thoughts

Valentine’s Day…ah, sweet love. A day to remember those you love, to let them know how much they mean to us. Little heart shaped candies with sweet sentiments…love. I mean, who can’t get a little jazzed about love?

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.

We were surprised today by my brother-in-law, niece and youngest nephew. I got to spend some one on one time with my nephew and it was glorious. He was giggly, smelled yummy and full of wonder at all the silly little things we were doing. As we played, of course I saw Declan and remembered how he was just embarking on some of the accomplishments my sweet nephew is mastering when he was diagnosed. I waffled between the moment with Liam and remembering the moments with Declan and I was doing a decent job of holding it together and then I thought of Cole, and my heart broke all over again. It broke for a different reason, for how much I missed with him…the little moments, the moments I missed because I was with Declan, stolen by cancer. Of course by Declan’s side was where I needed to be but Cole needed me too. I tried not to think about what the separation was doing to Cole while I was in the hospital, it was too hard on top of everything else we were dealing with. It all came rushing back today and my heart broke for Cole…and Declan and everything we missed, and are missing.

Everyday houses a litany of mental landmines. I’d say I’ve (I speak in terms of I because these are my thoughts but if you could see the mental landmines we as a family navigate on a daily basis, my house would look like those old WWII movies with the bricks toppled) become decent at compartmentalizing them…probably too good…but the holidays just peels back the compartment like the twist key on the top of a sardine can, making it near impossible to keep the lid on my emotions.

Today has been a stuggle against the love I lost, the experiences I lost and the heartbreak over not being able to change either. I know there is nothing I can do and I feel I’ve done a decent job of being more present with the kids but I’m angry. I’m angry that once again as we shop for presents for the kids that I find myself shopping for the perfect all-weather toy for Declan’s grave…I’m angry that I have to search for holiday pictures that include Declan to put up with the holiday pictures we put up with our holiday decorations (God, take as many pictures as you want…take 10 more than you ever think you’ll need, just do it. Even if it’s just for you…you’ll never regret it.)…I’m angry and heartbroken, again. I just don’t understand how it can be real. I know it is…my broken heart tells me so all day but maybe just maybe this is the worst nightmare of all time. Maybe.

But it’s not. It’s our new life. The one where every joyous moment is almost perfect. Almost because just at that point where the joy erupts, thoughts of how much more perfect it would be if we were all together again. The whole family…and I’m reminded again, this is the new life we lead. There’s a lot of wonder, joy, giggles and love…but the shadow of what it could be lingers over it all. Our new life.

I did enjoy the time with my nephew though; these smiles will always be enjoyed in the moments of our lives. Declan did teach us that…just wish he could still be here to smile along with us.

… So much worse than you think.

It wasn’t a bad one…deciding to try to help create something that could make progress towards ending the course of something that killed my child, arguably not a bad choice. As I reflect on it today, not the right one for me and definitely not for my family.

It’s frustrating to say the least. I want to take action and you’d think of all people I would be able to do…I mean I have a fantastic reason, to help save other kids and families from our fate. For crying out loud, for Declan! I mean if I can’t find the motivation?! Unfortunately that fact has it’s land mines, it’s not about motivaton or want…those things are there in spades. It’s about fear. What if I fail again? Over the course of the year, I’ve tried to think of why…and what I can come up with is this – if I don’t try, I can’t fail. Truly insane I know, but there is protection in this insanity.

In spite of that, Journey 4 A Cure is thriving and I can say with confidence that it will not fail. It’s being led by some amazing people. Family and friends who have stepped up to build an organization to help all kids. My inaction was never going to pull down J4AC because of the will and determination of others.

At this point though, it is time for me to step away from my title as VP (I’ll always proudly be the Mommy part of my title!). I can’t struggle with these feelings of nothingness and frankly, it makes me feel bad to think and hear that people think J4AC success is because of me. I feel bad enough. I don’t need any more sources of bad feeling, intended or not. With the holidays upon us, I can feel the emotion starting to well up and it’s time (over time, really) to take care of my family.

Journey 4 A Cure is, and will remain, the pinacle of what I believe is good about making a difference in this ridiculous world of childhood cancer. I am proud to have my son associated with the foundation of this great organization. I hope to see you at future events, I know I’ll be there!

Oh yeah and one more thing…please vote on Pepsi Refresh to support the iPads4Cancer program, the difference being made in the lives of these kids battling cancer is immeasurable.

Everyday is an intricate maze of emotional landmines around our life since cancer invaded our family. Even more so since it stole Declan from us. Today I fell head first into a landmine. I would almost liken it to jogging along a path and rolling your ankle off the path. You know how you’re on your feet one second and then WHAM you’re on the ground. It’s shocking, and as much as you would think our lives have laid a protective groundwork around our hearts…it hasn’t. Declan dances in and out of my thoughts all day, everyday. Everyday…just like my other boys, he’s just not here.

So you’d think I wouldn’t be shocked when I get rocked by an emotional moment…maybe I’m doing a much better job of controlling my emotions, too good. Today I learned about another boy who was taken from his family. It isn’t that his life is any more or less important than every other child I’ve learned about since entering this insane world; they are all precious and the center of their respective universe…as they should be.

What was different? I read Tyler’s Mom’s words about his final hours and in those words I felt Declan. Felt the events in his final days that mirrored her son’s. Remembered the feel of his cool skin against my cheek after he left us. Remembered how amazing it was to finally hold him in my arms again, nuzzle his sweet body against mine…the way a mother should hold her 11 month old; except the little boy I love was gone. Oh he felt amazing in my arms but what I truly ached for, my sweet baby…was gone.

I’ve pushed away a lot of the raw feelings of those last few days because well, they are still so raw and really still so unbelievable. Today, I fell off the jogging path back into the thorns of August 2010 and my heart broke all over again. It broke for Tyler’s family because I know, I know what it was like to watch my son lose his battle with cancer…to see the newness of his young vibrant body fight against a demon so strong. Truly fighting to live but not having the means to be able to do so because of the poison that is cancer was overtaking him. I fell into the hole of helplessness again and remembered the pain of knowing there was nothing I could do to save my baby. My baby was going to die and then having to wait and watch as the demon overtook his worldly body; knowing death would mean peace for him but hell for me. And truly not until the second of his death did the realization of the horror of what it means to lose a child come into focus.

I fervently pray every day for the miracle that did not come for our Declan. I pray because I believe all children should be able to live their lives; but really I want to save another Mommy, Daddy and family from this hell. It is a hell in so many ways…the world seems “fine” from the outside and really it is on so many levels…we laugh, we enjoy each other and truly revel in the beautiful boys and family we have; but in all that joy is the hole of incompleteness.

We are a man down. We are the family gathering with that one special relative missing…always. Falling off the path. It’s a great run and we’ll get up and brush off the dirt from the last fall and enjoy the rest of the run but the sting of the fall is still there, lingering…reminding us of what could have been.

There is a huge misconception about me that I need to fix. Although I take action to correct it every time I am faced with it and have even written about it here, it is clear to me that I have not done a good enough job. So here goes…

Journey 4 A Cure is not in any way a success because of me. Journey 4 A Cure has become a success squarely on the shoulders of my sister-in-law, Beth Collingwood. It is her long hours and tireless effort that has made Journey 4 A Cure a success. Almost 100% of what you see online with Journey 4 A Cure and through Facebook is not me, it is Beth. They are her words, not mine, you read each day.

Beth is a tireless supporter of Childhood Cancer and has created an amazing testament to the love of her nephew through Journey 4 A Cure. She has created a foundation in less than one year that is making a difference in the lives of children and their families battling this horrific disease. Truly inspirational and she deserves that recognition. Please give it to her when you see her next.

As far as me, well, I don’t understand my inability to focus my energy on making this difference. I mean of all people, right? I started with the best of intentions but in the end my contribution is negligible. People approach me and tell me what great things I have done and I correct you each and every time. Maybe you think I’m being gracious…I’m not, I’m being truthful.

There is another misconception that I show up at Childhood Cancer events to stand in the spotlight and bask in a glow of success that doesn’t belong on me. That couldn’t be further from the truth. I show up to honor Declan. Period. I show up as a show of respect to all of you for your support of Declan. To in some way relay how grateful we are to all of you who came to know and love my son through Declan’s Journey. To thank our family and friends who have supported us in ways we will never be able to repay. I/we tell Declan and my family’s story in the hopes that it will impact one more person to act.

I wrote a daily digest of my son’s experience with cancer. Initially it was done to update our family and friends on Declan’s status. Through the retelling of his day, I wrote my thoughts about what I thought he might be feeling or what we witnessed that day or what he went through or about things I couldn’t fathom happening to babies and children prior to March 9th, 2010 or about my/our fears. I never meant it to become what it did but then, selfishly, I kept writing because it meant more people were praying for Declan. He needed every last one of those prayers…so I wrote.

Your words to me about my strength and what a great mother I am is the thing that makes me least comfortable. I am not strong; I am just dealing with something you pray you will never have to. I didn’t have a choice but to be strong…for my son. I’m not a great mother because I did that…anyone would do that. Mother’s are supposed to be there for their children and protect them at all costs. The one thing I couldn’t do was protect Declan from the cancer that ultimately took him from my arms. I will live the rest of my life grappling with that fact.

Please don’t post to me your disagreements about my assumptions about myself, they are what I believe. I don’t want you to fix them; it is my job to work on them. I don’t want to be told how strong I am, or was, or what a great Mom I am. I have never been comfortable with that. I don’t want to sound ungracious, I’m not. It is just hard to marry my thoughts with your words.

I have met some amazing people on this journey with Declan so I welcome you to come talk to me. Truly I do, because each time it brings Declan back to me for those moments; but let’s talk about Declan and how amazing he was. How he enjoyed his little life (or about Will or Brady or Cole or the Redskins…whatever).

Lastly, please give Beth the credit she so richly deserves. It is an amazing thing she has done.

Not for lack of want, I have not “announced” my inclusion in the 2011 Class of “Mommas”. Perhaps it is due to the fact that I am a late entry because I’m replacing a Momma who is unable to attend because her child has had a change in their health status. Not a great feeling. But please know…I have followed and admired the 46 Mommas since I first saw them last year. So let’s go through a little history on this and the why.

First of all, none of us…ok, I’m speaking for me but I feel fairly confident that this is not a step most of us would take without the desire to do something, decidedly obvious, to draw attention to the world we were drawn into by hearing the words, “Your child has cancer.” Those who have known me for years, know I loathe doing anything drastic to my hair. Bangs? Oh my heavens no! Of course, I have deep seeded issues around this subject. (enter the time machine music….is there such a thing? Ok, maybe not but follow me back to high school for a minute.)

I worked a hair salon shampooing hair my junior year. Yeah, not exactly the internship at the White House but it put gas in my ’76 Mustang…gosh I still love that car. So anywayyyyy…there I am one Friday night and this one stylist had just returned from NYC armed with this “awesome” hair cut she had learned, and can she try it on me? Naive me…well is it short? (This question coming from the girl one cut away from the “bob” she’s been dying to achieve.) The answer…no. Silly me. The first cut I remember was large and heavy handed, sweeping down the middle of the back of my head…my head actually pulled back from the force of it. For a second I contemplated saying stop…I’ll wear my hair in a ponytail for a however long to get it back to “normal”…but I didn’t, I think I was in shock. I left choking back tears already dreading going to school and facing the, ‘what did you do to your hair?’ questions. Needless to say, my “bob” was, at this point, a thing of the past.

I guess I should also make a public apology to my then prom date (2 weeks out…OMG, the horror). Really, Dave…I had no idea, it wasn’t intentional.

Ok, so that’s done. Seriously, I HATE getting my hair cut by anyone but my sister-in-law, Beth. (Sidebar, this Beth is my brother’s wife…I have 2 sister-in-law’s named Beth, Stan’s sister and my brother’s wife…yeah, confusing at times.)

But then you experience the world of childhood cancer.

A world where little boys and girls routinely lose their hair. Something that I would have found horrifying earlier in my life, they handle with incredible grace and poise. To some degree, I was blessed to have a child too young to know he was losing his hair due to the horrific drugs being pumped into his system to combat the war being waged on his body by cancer. That being said, I remember the first time I saw a clump of his baby hair fall out. I was overcome with sadness. His silken hair, the same hair I rubbed my cheek on when we snuggled and he caressed as he fell asleep, falling out. I remember thinking I needed to figure out a way to replicate that feeling for him. My Mom came to my mental rescue on this one and made him small blankets with this fuzzy, hair like material that I could place between his head and hand so he could have that same experience….ok, that sounds totally icky as I type but it was super soft and Declan loved it.

So back to now. Yes, I hate getting my hair cut but it’s such a non-event in my mind when I think about the 46 Mommas. It is a means to a potential end and an opportunity to raise more awareness. What if my shaving my head along with these brave women hits home with one more person…or two or two thousand or two hundred thousand? Of course it’s worth it. It’s about awareness. It’s about raising awareness.

So next Wednesday, I’m standing side by side with my 45 new Momma friends. 46 standing in support of the 46 new families who will learn their child has been diagnosed with cancer, each day. 46 each day…that’s why we’re 46 Mommas. 46 new kids…a day.

Will you join me in fighting this battle? If you live in the DC area, I would love to have you there to cheer me/us on next Wednesday at Union Station. Check out the link below for details. If you can’t be there…will you tell our story? The one of 46 Mommas coming together to honor their children battling, surviving or being remembered in a very personal way.

http://46mommas.com/index.php/mommas-and-kids/class-of-2011-shaving/item/sherri-carmical.html?category_id=11

As I imagine many of you did, I spent time reflecting on the events of 9/11 yesterday. I began my day by lighting a candle we received as a gift of comfort. The candle is from a non-profit called Heartworks in Bernardsville, NJ which was formed ‘in response to the kindness that sustained so many families in the months and years after September 11, 2001.’ The candle was burned at a 2009 September 11th memorial service and was blessed by the family members gathered. ‘It was blessed by the family members gathered at the Mass. So that by lighting it, their faith, endurance and resiliency are now being shared with you.’ We have lit this candle on many occasions and enjoyed the comfort of its glow.

I started yesterday by lighting this candle in rememberance of those who lost their lives in New York City, in Shanksville, PA and in our Nations Capital…just a short ride for where I sit now. The candle is now almost gone and I felt it was only right the final day it would be lit in our house was 9/11.

As I lay in bed last night I reflected on that day 10 years ago and the days that followed. The shock, disbelief and uneasy feeling that life as we knew it would never really be the same again. During my reflections, Declan weaved his way into my thoughts as he does so many times throughout each day, and I was struck with the similarities between the emotions we felt on 9/11 and the feelings a family deals with upon learning their child has cancer. How, in each case, a terrorist has invaded our lives and changed the fabric of our life. Different types of terrorists but each silent in their assault, each devastating to the structure it has attacked…to lives it has invaded.

In retrospect, the feelings I felt on 9/11 were almost identical to those I felt when I heard Declan had cancer. The initial shock and disbelief…are my eyes / ears deceiving me? In the days that followed, I remember watching the families desperately trying to find their loved ones. In the days that followed Declan’s diagnosis, we were frantically searching to find the right hospital, doctor and desperately hoping for the best in the worst possible situation. Then the realization that life would not be the same for us or Declan, that we were battling a new war…for the US, a war against a new form of terrorism; for our family, a war against a stealth and relentless terrorist invading the body of our child.

Just as worldwide terrorism still lives today, so does the battle being waged against childhood cancer. It is why we continue to Journey 4 A Cure. As I type this and reflect upon the huge task ahead of us, Stan just let me know dear sweet Gabby lost her battle last night. To say I am crushed is an understatement. Please pray for her family and all those fighting the terrorist that is cancer.

2 years ago this day at 4:46am (Declan) and 4:47am (Cole) we were blessed with the addition of our 3rd and 4th boys. To say we were over the moon is an understatement. We were also a little bit shocked…because they were 6 weeks early, born at 33 weeks. At 2:15am I awoke to a “moist” feeling. Since I my belly was out to Tuesday and back, I (ok, I admit it) thought my little men had helped me to “relieve” myself in bed (I mean I was peeing like every 4 minutes at that point so it wasn’t outside the realm and btw… waking up wet, still just as shocking a feeling as when you’re a wee tyke!). My only thought at the time, aw man! After a quick trip to the bathroom and a sheets change, I figured I’d be back in bed. Wrrrrrong. The “moistness” kept “moisting” me. Uh oh…this is not what I thought at all (FYI…all my kids were C-section due to medical reasons so this kid was oblivious to water breaking, plus no labor pains…nada, nothing.)

We raced into my Mother-in-law’s room (thank God, they were living with us at the time!) and said we were off to the hospital. She tells the story that she went back into her room to grab a robe and come help us get ready…by the time she got downstairs, we were already gone. Nervous? Ah yeah, just a bit.

So we get to the hospital and after some scary moments (ok, more like 45 moments) they were finally able to locate Baby B’s (we didn’t know what we were having, we now know this was Cole) heart beat and all was ok again. Our Doctor arrived assessed the situation (and this is where the real shock for us came into play) and said ok, we’re all set. Ok, sure…what does that mean? So Stan and I joked about getting the camera. (sidebar…those of you who know me or have tried to leave on time for anything with me, know I’m not known for getting out the door quickly…as we were leaving the house, I saw the camera on the counter and stopped to talk about whether or not we should bring the camera…poor Stan I torture him so, he practically lept over the counter to grab it so he could get me out the door at a more rapid pace.) When our Doctor said, well where is it? Stan and I looked at each other a little puzzled. Stan replied it was in the car…and this is where our jaws hit the floor…his reply was well hurry up because these babies will be here before 5am. WHAT?!? TODAY?

Ok, ok…I know that when water breaks, pregnant women in this wonderful world of ours have babies. I know this, we knew this…HOWEVER, this was our kids and it was 33 weeks so we became dense. We both thought I’d be on bedrest. Silly people we were (still are really). Even thinking back on it I can still feel the sense of shock. To say we were scared was a bit of an understatement but off we went. Me to the delivery room and Stan to suit up for the OR.

I’m totally tearing up thinking of the moments I saw both of my boys for the first time…perfect. Declan with his full head of dark hair and Cole with his little blonde peach fuzz. Beautiful, our sweet babies.

Declan

Cole

We were very blessed, our boys were healthy with no real major preemie issues. We spent the next two weeks in the NICU helping our boys get stronger and learn to eat. Ironically, Cole was the one who gave us the most “trouble” learning to eat. (Sucking and swallowing isn’t developed until 35 +/- weeks in utero)

Here are a few pics of our NICU stay..

Holding my boys, together for the first time!

Cole snoozing

Will holding Declan for the first time

It’s hard to believe how tiny they really were; Declan 5lb 9oz, 19 inches long and Cole 5lbs 5ozs, 18 3/4 inches long…yeah, and they were 33 weeks and no I can’t imagine how immense my belly would have gotten if they went to term.

Daddy holding Declan
(These last two are some favorites of mine because they show just how small they were.)

Declan was our first to come home after 8 days…here he is with his big brother, Brady, holding him for the first time.

And then Cole…

Back together again. So sweet how they used to cuddle up to each other.

Here’s a few more…

Ok, now I’m getting my self all worked up…I loved to watch them sleep together, so sweet.

In many ways, Stan and I think those days in the NICU prepared us for the many sleepless, frightening days and nights with Declan during his diagnosis. We had been through equipment “boot camp” in the NICU so everything wasn’t so foreign and frightening. But that’s not what today is about. Ok, sure I’m sad…I want both my boys to be here celebrating their 2nd birthday together but that’s not to be. So we’re remembering the wonderful day that was their birth (thank you Stan for talking me off the sadness ledge today) and how joyfully we shared the news of our two new additions, our Declan and our Cole.

Happy Birthday to you Declan and Happy 2nd Birthday to you Cole! We love you both so very much!

The following was written by a dear friend whose son, Nicholas age 2, is battling a form of brain cancer known as Anaplastic Ependymoma.

I would ask for your special prayers for little Nickybear…he and his parents arrived in Memphis today for Nicky’s follow-up MRI scans on Thursday at St. Jude’s. Please pray with me that his scans are clear.

Please also pray for Luke Hawley, his follow-up scans are tomorrow in DC. He and his family have been enjoying a wonderful family summer…free of the horrors of cancer…please pray their joyous summer continues with an “all clear” on his MRI. Our dear friends, Brent & Missy, are on their way to MD Anderson for his follow-up brain tumor MRI’s tomorrow as well. Pray for their positive scans and pray for a day when cancer is a term of the past.

The following words were written my Nicholas’ Mom, Angelia, whom I have the pleasure of calling friend. I feel as if I wrote them myself. Ang has graciously allowed me to share her words with you.

If you never had to ….
If you never had to hear the words “your child has cancer” …
If you never had to live in hospital rooms for days that turned into weeks….
If you never had to see your child wake to a world of deficits from surgery, never the same ….
If you never had to watch your child have lines or ports hang from their tiny chests …
If you never had to watch massive amounts of poison being pumped into your child’s body ….
If you never had to hold your child while they vomit from the same thing that’s suppose to help them …
If you never had to watch your child in pain and feel so completely helpless …
If you never had to hook up a feeding bag that pumped food into your child’s body….
If you never had to hold your child while they sedate them for more tests…
If you never had to watch your child be fitted for a radiation mask…
If you never had to cry in fear of the reality that cancer has no rules…
If you never had to watch your child’s hair, eyelashes and eye brows fall out ..
If you never had to watch your child’s body become fragile and small…
If you never had to watch for side effects of treatment …
If you never had to sit in front of a doctor listing off the deficits your child will have from treatments…
If you never had to live in a watch and wait lifestyle praying cancer is gone….
If you never had to wait for results that could change EVERYTHING all over again…
If you never had to hear that your child relapsed and more medical options may be an option….
If you never had to watch your child fighting to breathe because the disease has spread ….
If you never had to hear the words, no more can be done …
If you never had to watch your child’s life being ravaged by cancer ….
If you never had to make arrangements anticipating your child’s death ….
If you never had to wonder if today will be your childs last..
If you never had to watch your child take their last breath while you grip them tightly…
If you never had to kiss your child’s casket and say goodbye …
If you never had to mourn the loss of a child DAILY …..
If you never had to write a journal entry about how painful life is without your child….

I thank God every day that most of my friends and family don’t know the intricacies of this perfectly written poem. That you’ve never had to do even one of the things listed here, much less all of them. I thank God every day you don’t have to do what we do…the parents of children with cancer, the parents with children surviving the days after cancer and all the late effects of their treatment or the parents/siblings/family living with the loss of a child taken from your arms because of cancer.

So I have an ask…because my life was no different than yours prior to March 9th, 2010; I’m asking you to vote (www.vote4acure.org) for Journey 4 A Cure through August 27th so we can get funds into the hands of those doing such meaningful research to help save our kids. We are so close but we need everyone to vote and ask those around them to vote. I feel we can do this…I mean I really feel it.

You all know this…I don’t like asking. It’s not a place I reside in comfortably, at all. But I’m asking, again.

I’m asking because my son’s life touched yours. For some reason he touched your heart and because of that I’m asking you to take a few minutes each day for the next 6 days and Vote 4 A Cure. Vote with that piece of your heart that drew you to Declan. Vote and ask your family and friends (and their friends) to vote with you. It’s 6 days…and seconds a day. Please, because you won’t be able to go back and get this time back or have to wonder if it would have made the difference (a question I ask myself daily) if you ever have the devastating misfortune to hear the words…”Your child has cancer.”