Thanks for letting us know…

We’re decorating today, we typically do the day after Thanksgiving or close to it. ūüėČ Anyway, the first thing I opened was from you, sweet Declan. It was a candle crock that I frankly don’t remember receiving but was still in the cellophane wrapper. The saying simply said, ‘You’re not alone…’ and of course I know it was you letting us know you’re with us in all we do.

Missing you terribly but remembering your love.

A grateful heart

I have tried numerous times since March 9th to write this post and while I don’t think it will be any easier today, it seems appropriate to finally do so.

Simply put, thank you. ¬†I think the reason I have had issues with this post comes from the inadequacy I find in the words thank you now. ¬† When you are helped in a way that allows you to focus more time where you need it, in this case, Declan; the words just don’t seem appropriate. ¬†Especially to the depth we have required help…emotionally, spiritually and physically. ¬†

I’ve also been afraid to leave someone off…I mean, the horror…someone does something nice, raised money, helps with my kids, introduces me to someone who can provide us with some needed function, brings food, sends a note, sits with us in the hospital are a few that come to mind. ¬†(Even here, I’m getting nervous because I feel I’m leaving out a category…ugh),¬†

Throughout we have been blessed to have the support of our family and friends (new and old). ¬†It is a tremendous feeling to feel the love of so many surrounding you in what were our darkest of hours. ¬†Many of these amazing gestures came to us in the moments when we needed them most…on those days when we felt the struggle within us to be able to go on. ¬†But we did and it wasn’t just the love of a parent for a child that got us through but it was the knowledge that our family was supported on so many levels. ¬†

So on this Thanksgiving Day, we are thankful for you.  Thankful for the love you showed us and our Declan during his journey.  You will always hold special places in our hearts.

We hope you had a great holiday.  We had a nice day with family and have some new great family moments to reflect on.  The tears flowed at times but they were expected and ultimately, the day was enjoyable.  Happy Thanksgiving! 

  

Happy Thanksgiving and some thoughts

I’ve always loved the holidays, I’m a geek for happy stuff like this. While I don’t hate the thought of the holidays or the anticipation of watching my boys enjoy their grandparents, aunts, uncles and cousins tomorrow or decorating the tree or ripping through their presents on Christmas morning; the last few days have been tough.

They’ve been tough because instead of figuring out which gay little outfit I’ll put my boys in for the annual Carmical Christmas card…I’ve been trying to figure out what is the appropriate thing to put on Declan’s grave for Thanksgiving and the Christmas season. ¬†Nothing seems right but I guess that shouldn’t be a shocking revelation to me. ¬†I’m also trying to figure out how to keep him part of our celebrations over the next month without it being a sad cloud hanging over what I know will have joy for us…being together. ¬†I guess we can’t avoid the sad part in whole but I do hope it’s not a cloud that takes the sparkle out of the boys eyes….or ours for that matter.

Gosh that sounds terrible…it is sad. ¬†I should be sad, Declan died. ¬†What’s more sad than that? ¬†But frankly, it’s a part of who we are. ¬†I guess that’s kind of my point, it’s part of who we are now and I’d like to think we can miss Declan (like we do everyday) but still find the joy in the holidays. ¬†In each day since he died, we’ve been able to do so. Oh sure…some days are much harder than others (like the last few days) but there is joy in each day, if we’re open to seeing it. ¬†Even if the window opening to the joy is being pried open with a crowbar, you can still see through. ¬†ūüėČ

I’d also like to offer up a suggestion for folks who will be finding themselves across the table from someone like us who has lost a loved one or special friend. ¬†Let them know you understand it will be tough for them and you want them to know you are there for them, in whatever way they need. ¬†It truly is as simple as that. ¬†In the moment, those words are very powerful and supportive in ways I hope you never have to learn…by simply letting the person know you didn’t forget. ¬†BTW, this advice transcends the holidays…hint, hint. ¬†ūüėČ

Beyond that, can I ask you a favor? ¬†If you haven’t already, will you tell your family Declan’s story?

Will you tell them about the little baby you know from Virginia who died of cancer in August?

Will you tell him about our resolve to Journey 4 A Cure?

Will you ask them to tell his story when they go home and then ask that person to do the same?

Will you do it for all the brothers and sisters who, instead of fighting over the wishbone tomorrow, are heading to the hospital to visit their sibling…or worse, visiting the grave of or remembering their brother or sister during this holiday season?

Will you tell them, even though it might not be a comfortable conversation, remembering it will be 1000x more comfortable than hearing, “Your son/daughter has cancer.”?

Will you tell them because we want to make a difference and we want to start now?

Will you tell them because we learned today of another 6 month old boy from our area was recently diagnosed with AT/RT?

Will you tell them because we want this to be viral, we want it to be strong and hard and fast…not unlike the cancer that consumed Declan.

Will you tell his story and tell them about Journey4aCure.org?

Happy Thanksgiving to you and your family…we’ll be praying and giving thanks for all of you tomorrow (like we do every day).

Missed opportunity

I watched a spot on the Today Show this morning during which Matt Lauer took on the role of a Child Life Specialist at St. Jude’s for the day.

(Just in case you weren’t in the “know”, a Child Life Specialists role is to support children in the hospital in a myriad of ways; helping children and their families cope during their hospital stay as well as their treatment. ¬†This support extends from play techniques to help ease stress and educate the kids on what is going on with them; to emotional support for families and caregivers; to ensuring kids are able to be kids all the while encouraging age appropriate development. ¬†From my experience with these amazing people, it is one of the toughest job you’ll ever love. ¬†They are truly angels on earth.)

The story was great and really highlighted how integral the Child Life Specialists are to the day to day care and support of children in the hospital but I can’t help but think what a HUGE opportunity the Today Show missed in not adding one simple line to the end of their segment. ¬†Something along the lines of this…”While I spent the day with the Child Life team at St. Jude’s, there are Child Life Specialists across the nation supporting kids just like the kids you saw here today…won’t you contact your local hospital to see how you can get involved in making the life of a child in the hospital a little ¬†more bearable.”

What would that have meant for all the kids in treatment today?

So I was left with several thoughts…people, like me, don’t think there is a need for this in their own backyard. ¬†I didn’t. ¬†I mean, are there Child Life programs in all hospitals? ¬†I can’t imagine how much more lonely the experience would have been for Declan, our family and the other kids & families we encountered during our various hospital stays in Virginia and Houston, were it not for the amazing people who dedicate their lives to helping kids experiencing these horrors. ¬†They make life fun in the midst of a very scary existence and in many cases light the way toward happiness daily…sometimes hourly.

For us, we contributed to St. Jude’s for years and thought we were helping all kids with cancer. ¬†I don’t mean to pick on St. Jude’s because they have done a tremendous job of marketing and do an amazing job in funding research for pediatric cancer but the reality is they don’t reach all kids. ¬†Frankly, the segment brought me to tears because every kids deserves the pajama party and all the fun things that Child Life can do. ¬† But I imagine most folks walked away from that segment thinking ‘well that’s all taken care of’ or ‘what can I do locally? ¬†St. Jude’s is in Memphis, TN.’

And maybe it wasn’t just the Child Life segment…it was the realization that someone else like me, a mere 1 year ago, was probably watching that segment today and thinking ‘wow, we really have a handle on pediatric cancer and helping these kids’. ¬†It’s stuff like this segment which serve as a reminder to us that what we are embarking on is right and needed…and is fueling our fire to bring more attention to pediatric cancer and it’s currently lack of funding. ¬†To making sure everyone knows we are no where near where we need to be to help support and save our kids.

(Shaking head)  Wow, what a missed opportunity.

For Declan

My sister-in-law forwarded me the following sonnet my niece, Ashley, wrote.  I asked Ashley if I could post it here as it spoke to me and I feel it will do the same for you.

Never thought I would have to see you pass

As I heard the news, memories flashed back

But my time with you went by too fast

Felt I should have done something but I lacked

Now all I want is some more time with you

Not here for long, but you taught me so much

Declan, I loved your laugh, smile and coo

I fondly remember our last sweet touch

There was never a day I did not cry

You inspired so many with your life.

Remembering the day I said good-bye

When you left us pain cut me like a knife.

Think of you in so many different ways,

carry your strength with me throughout the days.

3 months ago…3 seconds ago…3 days ago

Does it really matter? ¬†You’re gone. ¬† In some moments, it’s as raw as 3 seconds after you took your last breath…the searing pain that ripped through my heart is still there. ¬†I now know it will always be there. ¬†It’s not something you get over or get used to, it just is.

I needed to go through pictures last night to give to the people helping with the web site launch and there were so many emotions for me. ¬†My eyes hurt from trying to absorb every last image again…as if it was the last time I would see any of them, kind of like the last days with you. ¬†I wanted to hold you every second knowing the seconds were waning…but I also knew your Dad’s heart was aching for the same. ¬†We took turns…we even held you together. ¬†I never thought you, me and your Daddy would fit comfortably (ok, it was comfortable of heart…not exactly body but it felt right) in that twin hospital bed…certainly not for over 3 days but we did and it was one of the most beautiful and¬†heart wrenching times of my life. I know we will both always cherish those last moments with you; holding you, smelling you, kissing you, stroking your silky smooth skin, telling you everything you want to say to your kids but never seem to get out…hoping we didn’t leave anything out. ¬†I know you know we love you. ¬†We saw it in your smile and your big beautiful blue eyes; and even though we didn’t get to see them in your last few days, we have your pictures and in them we find the joy.

The joy doesn’t erase the sadness of the reality that I’ll never get to see your beautiful face except for in these pictures but they still bring joy to me, to us. ¬†Your life was special in so many ways not related to the cancer that took you from us. ¬†Our lives were forever changed on August 26th and then again on August 18th…I wish I was able to have you longer here on earth (we all do) but we carry the immeasurable amounts of love for you with us each day…I think it’s what gets us from one minute to the next. ¬†Missing you sweet baby and remembering how precious you are.

Here are a few of my favorites….

Daddy’s first time holding you both…it’s so hard to believe you were both once that small.

Even though you were tiny…you were still a big 33 weeker! ¬†5lbs 9ozs!

Brady’s first time holding you…”CHEEEEEESE!”

Mommy and her babies!

Thank God for iPhones, long arms and perfect timing. :)

Your 1st of many wagon rides…you were giddy with laughter. ¬†My heart will never forget the joy of these moments with you.

Still the best $20 I ever spent! :)

Thank God for our decision (ok, it was Daddy’s idea but it was a great one!) to go to Houston as a family and all the extra time we had with you there as a family.

Your last wagon ride and probably one of my favorite pictures.  Maybe you knew more than we did?

Sunsets and you

Sweet baby…you know I love a good sunset. They’ve always made me feel in awe of the beauty the world God created for us. When I am enjoying the growing beauty each sunset brings, my thoughts have always been brought to those I love who have passed away. Of course I still think of them but now I see you. The beauty of your face, your spirit…of well, all of you. In the beauty I have always enjoyed, I see you and it gives me peace.

On especially beautiful sunsets like tonight, I see you smiling at me with one of your big beautiful Declan smiles; and while I miss you, I’m glad you’re happy.

Stain glass windows and grief

I just ran across this quote and it struck a cord with me and what I’m dealing with.

“People are like stained-glass windows.¬† They sparkle and shine when the sun is out, but when the darkness sets in, their beauty is revealed only if there is a light from within.”

– Elizabeth Kubler-Ross, was a Swiss-born psychiatrist, a pioneer in Near-death studies and author.

It’s harder than you know to keep the light shining.¬† Keep the happy thoughts and prayers coming, I (we) need them.