Thinking of you today little man.  Your brothers are FIRED UP for trick or treating tonight.  Ok well, Cole isn’t but I’m sure he’ll love it when all the folks are around…like you, he loves an audience.   I found the pictures of my “pumpkin photo shoot” with you.

You were not too thrilled with me to start…

but you warmed up with a little help from Cole…

In fact, you calmed down enough to take a little cat nap.

And then I snuck in for a little pick with my babies.

You would have made a cute Batman.  I’m sure I’ll be thinking of you a lot tonight; and with every little fairy and her angel wings, I’ll be thinking of you and sending you my love.  Have fun riding on the squeals of laughter from your brothers.

I miss your sweet face.

I miss your soft, tiny hands.

I miss the joy you had for life.

I miss you so bad, it hurts.

…and while I was angry, I took down the pack n play in the family room you used to rest in.  I had been avoiding it because I knew it would seem odd to not see it there anymore; in some strange way, it made me feel more connected to you.  I didn’t even realize the magnitude of what I had done until a few minutes later and it crushed me.  I don’t think I’ve cried that hard since you died.  It’s getting harder not easier.  How can that be?

At grief counseling last night they talked a bit about the “firsts” and mentioned the holidays.  I actually felt myself shudder.  I know we did your birthday already and that was really hard but I have to be honest, I think I was still in shock from loosing you.

Your brothers make me laugh and that helps but it makes me miss you too.  I’m trying hard buddy, I’m trying so hard but this is harder than anything I thought it might be.  Can you visit me in my dreams tonight?  I just want to see your face…see your smile.  Maybe we could go on a wagon ride…you loved them so.  What do you think, is it a date?

…how the simple pleasures in life take on new meaning after the loss of a loved one. I found myself in the car alone today, not something the Mother of 4 finds herself enjoying on most days or weeks for that matter. Before kids, I used to spend my car time listening to music and singing…loud. I’m not good. At all. Not even close to something worthy of the back row of the chorus…being drowned out by all the good voices…but I love it. I’m definitely the person at the traffic light going to town on a song that you chuckle at.

These days, I typically use the alone time in my car to catch up on phone calls without interruption but today I heard a few songs I liked and I found myself turning the volume up a little bit more with each song (see I know my voice stinks so the louder the music the better I sound).

But today was different, I mean I’ve noticed it before today but it just seemed more in my face today. The lyrics to a lot of songs can relate to your current situation and I found myself thinking of Declan in songs that I shouldn’t have.

Like Pink’s ‘Who knew’…’If someone said three years from now, you’d be gone. I’d stand up and punch them out.’

Or Cyndi Lauper ‘Time After Time’…’Lying in my bed I hear the clock tick, and think of you.’

I could quote a bunch of songs but the one that really got me was Diana Ross’ ‘I’m Coming Out’. It is one of my favorites and a great car song for me…so today as I belted it out I thought what a perfect song for us to use as a launch song for the non-profit! (Amended a little). ‘We’re coming out, we want the world to know, got to let it show, we’re coming out…’ and I was smiling and envisioning the launch as a huge party. And of course my thoughts went to Declan…he doesn’t get to ‘shout out to the world’ and I cried hard for my little boy.

A friend reminded me, as I relayed this story, that Declan has done so much in his short life to impact the world and I agree. I guess it’s just really hitting me more and more that life as we know it is done. Not pull up the tent stakes, life’s over done…life is still good. We are still smiling and enjoying our boys and all they are experiencing. They are so funny and sweet and loving…but we’re a ‘man down’ and it stings through the smiles.

At dinner tonight, I saw the moon out the window over the setting sun. I love watching the sunset…I used to watch them with you sometimes, I’ve done it with all your brothers you know…something about them just makes me stop and watch. Very peaceful.

Tonight my thoughts turned to you, sweet Declan. How are you? Can you see the same moon I can? Can you feel the love from us? (I mean is it really like what Patrick Swayze’s character Sam says in the movie Ghost? Something along the lines of…”It’s great Molly, the love you have here, you get to take with you.”. I’ve always hoped that’s the case and dream it’s true now.)

And then I thought of all the times I thought of you today….
….when I looked at the nape of Cole’s neck
….when I walked into church
….when I watched Cole eat part of a donut for the first time (he loved it btw)
….when I looked into my friend’s smiling face
….when I was eating lunch…breakfast, coffee and dinner for that matter
….watching Brady sleep
….watching your brothers play
….watching the Redskins
….when I was showering…dressing, getting ready for bed
….now
….1 second / minute / hour / day ago
….all the time

I mean, I’m a woman, I can carry on 3 different conversation with 10 women at the same time while cutting veggies, drinking wine and diapering a baby but I truly didn’t think I would think of you all the time; that thoughts of you would be in my head all the time. It’s not like I’m sad either….well, of course I am but not like despair all day. I smile and have fun and have ‘regular’ days but you’re in my thoughts. Wishing you could be part of it, no matter now mundane. I know its the same for your Daddy too. We miss you buddy and hope you can feel all our thoughts and all the love we send your way.

And if I’m honest, I am glad I have you in my thoughts all the time…it makes me feel closer to you. I know you’ll always be there and in my heart…but that part I did know.

It’s the little things that grab hold and make ‘normal life’ a bit of a mine field these days. 

So we were at the mall, having a regular type day and I noticed a woman walking with her twins. It wasn’t that…I was ok with that, I mean I’m not the first person to have twins and I certainly won’t be the last.  :) 

I saw her several times because she was walking around in a way that she kept passing me, plus her boys were close in age to mine.  Again no big deal.  Ok well, just a little…more that I noticed her and then, of course, it made me think of Declan and Cole because of their similar age.   

Where it got dicey for me was when she ran into a couple with their own set of twins. As I watched their happy exchange I realized those moments are gone for me (and Stan) and I couldn’t stop the tears. I won’t ever be strolling anywhere with Declan and Cole again, much less be stopped to share the twin experience.  I’m just a lady with 3 boys to the ‘outside’ world.  Certainly I could have stopped her and chatted about our twins but that could have created an unnecessary awkward moment that neither I, nor a friendly stranger needs.  (All my twin Mom friends out there…I know the saying is ‘Once a twin Mom, always a twin Mom’ but it’s different now.  Maybe it will become different over time.)  

As I’m writing this I am again struck by the notion that you truly have no idea what is going on in the world of those we casually run across in our day. Just like me and the lady in the van a few months ago. 

BTW…the day did end on a high note when my Gamecocks whipped up on #1 ranked Alabama.  

Sent from my iPhone

I’ve been thinking about this post for a couple of days…

It’s been 7 weeks since our sweet baby went to heaven and it still seems so unreal.  I’ve said to myself “he’s really never going to wake up”, knowing in my head that he won’t but my heart doesn’t want to believe it.

Every night when I lay my head down, I pray and I talk to Declan.  I ask him how he’s doing and if my Grandfather is being good to him?  If he’s taught him the Redskin Fight Song yet?  If he’s o.k. and feeling better?  If he’s playing with the other angels, learning to roll over, crawl, stand-up, etc? I would give anything to hold him one more time.  I’ve been trying to concentrate on Declan’s sweet face and his smile… I want to remember how he lived.  I guess I’m trying to shape my memories of him and concentrate on the joy he brought to all of our lives.

The night before we brought him home from the NICU (he was just 5 days old), Sherri and I had a sleep over with him at the hospital.  Like most parents in the NICU, we had become “monitor watchers”… watching his heart rate, oxygen level and respiratory rate.  The sleep over was an opportunity for us to feel comfortable with him without the monitors.  We had a funny moment changing Declan’s tiny diaper the next morning as our nurse was trying to hurry us out of our room to make room for the next patient.  Declan had a “movement”, we thought he was finished and we put a clean diaper under him… he proceeded to have another “movement” before we could close his diaper… Sherri cleaned him and told me to pick him up and the next thing I knew he was having a “movement” on me… yuck!  We quickly got him into a clean diaper and I took my shirt off, I had “stuff” on my hands and in comes the nurse looking at me like “what the heck are you doing with stuff all over you and your shirt off!”. We had a great laugh, got our sweet boy in the car and drove him home for the first time.  Kind of a yucky story but what a great memory… something that will always make us smile and now cry at the same time.

Here’s a pick of him in the NICU and one of him in his car seat on that first ride home…

The ugly truth is that this little baby isn’t home with us anymore and our hearts are aching.

The ugly truth is that WE as a society don’t know much about pediatric cancer.  I say “WE” because I am assuming that if EVERYONE knew that this disease was killing 2500 children a year, that 12,000 kids were diagnosed each year, that more than 40,000 children/families in our country are struggling with this disease right now and WE knew that only ONE new drug had been tested/approved for use in children in the last 20 years WE would say… WHY???

What little research that has been done is funded by our government, non-profits and pharmaceutical companies.  We’ve shared with you before that pediatric cancer research only receives $130M per year and at that rate it will take more than 100 years to make an impact.  I think WE would have a problem with this too!

FACT – 1.4 million people are diagnosed with cancer each year and approximately 12,000 are children.

When you think about those numbers as a business or as our government… where does the money go?  We’ve read articles about funding that did not mince words… pediatric cancer is not a “lucrative market” for pharmaceutical companies.  They are companies that have to make profits, answer to shareholders, etc.  If they spend millions on developing drugs for each of the subtypes of pediatric cancer, then spend millions on bringing to market these drugs that in many cases would only treat hundreds (children), they wouldn’t be making their shareholders money.  So they invest in what will bring more money to their company and treat thousands (adults).  I’m a business person and I understand… but it makes me sick that children aren’t getting treatment that we are most likely capable of developing because of money!

So what do we do about it?  Our people… our society has to do something about the afflictions of this world that don’t make business sense for the businesses!

We each want the very best for our children.  We want to bring them into a world where… if there is a “known problem”, the people that have come before them have done something about it!  In my heart, I believe that each and everyone of us wants to make this world a better place… for our children and our children’s children.

I am excited to report that we are going to do something.  We want to make an impact!  We want to start a movement for our children… don’t they deserve it?  I anticipate an announcement about this “something” in the next few weeks and my hope is that each and everyone of you will help us.  We can’t do this without you!

The last two days have been particularly hard for me.  I’m not sure why.  Ok, that sounds stupid…of course I know why. Stan and I are part of a group grief counseling group at the church where Brady goes to pre-school and what I took away from last night is there is no script, no right, no wrong, no predictability when it comes to grief.  You just kind of have to go with the flow and every one’s ‘flow’ is different.

That’s the thing with grief that I’m figuring out (ha! I know I have so much to learn about it), what is comforting one day may not be the next and vice versa.

We have received many cards, letters, email, texts, wall posts, voice messages, etc. since Declan became ill and since he’s died it has, well, mushroomed.  Really it is so comforting to know that someone out there…family, friend, new friend (i.e. stranger), etc…has taken the time to reach out to us to let us know we are being thought of and/or prayed for.  Some make us laugh, some make us cry, some make us smile, some make us think…but they all make us feel loved and help us see how many people whose lives have been touched by our sweet Declan.

Like I said though, the last two days have been particularly hard for me.  I received a poem over email today.  It’s a nice poem written by someone for their friend who lost a child.  It crushed me.  Now I’m not saying this so no one will ever send me or us a poem or nice note again…please don’t stop they mean a lot (except for those chain emails…I think I’ve had enough bad luck this year so don’t send those ) but we also learned last night in grief counseling to not filter our emotions.  So here’s the poem followed by what I thought….

I’m playing catch with Jesus now

I’m running fast and free,

I’m exploring all the nooks and crannies

I’m the boy I was meant to be.

I know you’re sad to see me go

The time did not feel right,

But I fulfilled Gods plan on earth

And He let me take flight.

Please don’t cry too much for me

I know you miss me so,

But I’m happy and contented here

No worries, fears, or foe.

Trust and know I’m doing well

Even though I’m not with you,

Jesus will keep me by His side

Until the day that you’re here too.

Remember all the joy I gave

The many hearts I touched,

And know my work for God was great

With every hand I brushed.

I cannot wait to see you here

But I’ll try with all my might,

I’ll run to you, jump in your arms

And hug you oh so tight.

So finish all God asks of you

Lift praises to His ear,

Remember all you learned from me

Until the next time we are near.

I don’t know if it’s the fact that it really feels like this poem was written about Declan that hit me so squarely in the jaw but it broke my heart.  It broke my heart because I never got the chance to play catch with Declan or see how fast and free he could run.  He never got to explore all the nooks and crannies or be the boy we thought he’d be.  I do believe he fulfilled Gods plan but I’m so sad about how his plan was written.  Wouldn’t it have been such a better plan if he had made it?  Beat the odds?

I know these are the words of a grief stricken Mommy.  I mean I know, I truly know Declan served God well and his purpose was (and I believe still is) huge.  But it’s harder to find comfort in that statement on the bad days when all I want is to hold him and see him again…touch his sweet face and have him touch mine.

This is one of my favorites.  We were in Houston at the oncologist’s office waiting for Dr. Wolf to come in.  I was talking to Declan and he was holding my face and touching/watching my mouth as I talked.  I’m sure I was saying “Mommy’s face.  Declan’s face.”  I said it a lot to help him learn but truly I think it was a good excuse to try out “Mommy” with him and to feel his gorgeously smooth skin.

Oh baby, I think it’s just getting more real every day.  You’re not coming back.  Even Brady recognizes it.  He’s asked me several times when we’re going back to the hospital to get you.  :(  We’re having a tough time explaining your death in a way that he understands…maybe it’s because I now feel I didn’t do a good job when you were here.  I know I was too afraid to say the wrong thing about cancer and scare him (or Will for that matter) but now I think it’s just harder for him to understand.  Abstract concepts are so hard for kids anyway…cancer, disease, heaven, death…but throw a missing sibling into the mix?  Ugh.  I’m reading books on kid’s grief and that’s a big reason why we’re attending grief counseling.  Sure it helps us but I so want to understand your brother’s grief so I can help them.  I can’t imagine what my world would have been like if I lost my brother, your Uncle John.  I mean that makes me sad to type and he is alive and well, and living across town.  What must it be like for your brothers?  I mean I know it’s different than what your Dad and I are going through but just how, that I don’t know yet.

I know this poem will give me comfort at some point because I’ve learned Mommy’s (and Daddy’s too) never stop wanting for their kids…even when they aren’t physically here with us.  I want to keep that image of you…happy and free and content.  I REALLY can’t wait until you come running and jump into my arms for that delicious hug but I know I have more time here…you see I think mine and your Dad’s job has just begun and we have lots of work to do.

So go play catch…I’ll talk to you again soon.

Let me first say what I am about to type in NO WAY is meant to take away from or change any one’s opinion of the amazing job done by Breast Cancer advocates.  Declan’s MeMaw is a direct result of those amazing efforts.  I have dear friends and family who have survived or are in the battle right now (I pray for you every night) and are benefiting from it.  So keep up the good work!

I don’t want you to donate less or disparage the pink ribbon or the job done to raise awareness for Breast Cancer.  I am honest when I say I have always supported it…and now I find myself in a place of envy. I truly envy the job they have done.

But can I ask you a favor?  Can you just think about how perception and awareness for Pediatric Cancer would be changed if next September the NFL premiered Wear Gold for Pediatric Cancer?

I’m a huge football fan but I must say, it’s been tough to concentrate on any one sequence today because I am distracted by the pink.  I had turned on the TV to catch the game before the Skins and thought that I wouldn’t be as distracted when the Skins game started…you know vested, die-hard interest and all.  I had to turn off the Skins game…and they were playing a division rival! Those of you who know me, know how completely distracted I had to be to do this…I mean it was Philly…and we were winning!

I’ve always thought it was amazing to see the impact statement made during the games and still am to see the field awash in pink.  Maybe because it’s pink it stands out…not too much pink in every day football. 

Surely today is due to my current life experience because every time I see a flash of pink during a play today or a sideline shot or the pink ribbon…I see Declan in my mind, then my mind goes to the gold ribbon and then I start to think about the potential for next September.  Can’t you see it?  The entire month of September and the NFL wears gold ties, gold shoes, gold mouthpieces, gold socks, gold shoe laces, gold lapel pins, gold water bottles, gold cheerleader uniforms, gold yard markers, gold gloves, gold wristbands, gold whistles and lanyards, gold chins straps and gold ribbon adorned footballs / jackets / headsets / hats/  towels/ jerseys (really it was everywhere…I’m sure there were some undies too)! All to raise awareness for Pediatric Cancer.  What difference would that make?

Aside from Hyundai’s “Hope for Wheels” (which is awesome but they’ve raised 12 million over 14 years…again, it’s great but most kids medical bills are more than their yearly number, in less time), think about this…how many news stories did you see about Pediatric Cancer Awareness?  How many Parenting-type magazines even had it as a story, much less the cover?  Heck, how about ANY magazine?  I’m just asking you to think about it every time you see a pink ribbon or pink inspired product.  You’ll be shocked at how many times you’ll see it…it’s everywhere!   I’m envisioning gold for next September!

Again, I’m not trying to take anything away from the pink ribbon…I don’t even want to make gold the new pink.  It has earned that distinction.  I just wonder what difference it would make if next September was awash in gold and truly dedicated to Pediatric Cancer, like October is to Breast Cancer.

Hey maybe next year all those kiddie yogurts will have gold lids!

(I did happen to see the end of the FOX NFL broadcast and the pitch for St. Jude’s…I imagine they mentioned it earlier in their broadcast because it wasn’t until that bit that I realized what those pins represented.  BTW…another marketing job well done…St. Jude is probably the most recognizable pediatric cancer center…we supported them for years…but it treats only a very small percentage of the pediatric cancer population.)

Stan’s Mom and Dad came up today so we could have a date night.  Seems novel…let’s give it a go.  So off we went to dinner with some dear friends and then to a movie.  I must say, being “normal” is easy and hard all at the same time.  I mean we had fun but have you ever been doing something but you keep getting distracted and can’t focus on the distraction…it’s kind of like that, all the time.  You’re having fun, laughing with friends but there’s this nagging thing.  Not that Declan is a “thing” but oh heck, it’s hard to explain.  Dinner was nice and we had some laughs, which we love.  We’re trying hard to keep the smiles and laughs ringing through our house.

So the movie…well, it was good but I left stressed.  It was The Town by Ben Affleck.  It was definitely entertaining but yeesh it was one of those movies where you know stuff is going to happen…not Friday the 13th, Jason and his crazy Mommy type stuff but just bad things.  Ugh, my shoulders are still stiff.  I think we need to go the comedy route for a year or so.

Plus, during the movie, I keep flashing to my brief encounter with Ben at the Today Show and thinking about how I need to send him a letter or something thanking him for being so kind.  It was distracting and comforting.  I guess it’s how I’ll be processing things going forward because it’s like that a lot these days.  I’m doing good and chatting with someone or in the line at some store and something crosses my mind or a phrase brings me to Declan or something related to him.  I’d say it’s probably happened in most of my conversations, I imagine most people don’t know it’s happened or maybe they do.  I try to remain focused.  I don’t know what I’m saying.  It really is a minute to minute thing.  Not necessarily gut wrenching but it’s there in many forms…some terribly happy…some terribly heartbreaking and everywhere in between.

I spent about an hour flipping through my cell phone today looking at pictures of Declan and missing him oh so much.  I’d be lying if I said it didn’t make me sad but it did make me smile too.  Here’s one I particularly liked…hope you do too.

Good night friends.