Monthly Archives: July 2011

The unspoken, unrealized dream

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We all have them. We have them for ourselves and once you have children, you have them for your kids. In fact, the dreams I have (had) for my kids are even more intense then the ones I have for myself. I sometimes wonder if the dreams I had for myself…mother of 4 boys AND twins. Am I selfishly being punished…I got what I had secretly prayed for. Did Declan suffer for my longing? Believe me, I “get” that this is an irrational thought process. That this is my brain trying desparately to make sense of what has happened to one of my children. But I wonder….

So back to the dreams. I love the beach. I mean, I absolutely love it. There isn’t a place on earth I have felt more centered than at the beach, especially the Outerbanks of North Carolina. Maybe it’s years of summer vacations I spent at the White House or the vacations with friends or the family vacations with our new families; whatever it is, I have always felt whole here. At peace. I dreamed of sharing this with my family, my children…my boys. There is something about an unrealized dream, especially one you can’t ever make come true. Oh sure, there are signs all around me…Declan showing me his presence. It is heartwarming. It’s crushing. I dreamed of sharing the beach with all of my boys…not 3 of my boys and the passing dragonfly (Did you know the story of the dragonfly? The extra set of wings they have are not theirs but are the angels who catch a ride from Heaven to visit loved ones…btw, lots of loved ones enjoying the beach with their families this week.) or the shooting star I saw while watching the moon rise (thanks Declan, I asked and you gave me a sign) or the dimes or well, you get the picture.

I didn’t dream of it this way. I didn’t dream of the crushing feeling coming across the bridge…the same bridge that brought such joy in the past. I didn’t dream of the overwhelming emotion which overtook me upon our first visit to the surf….watching Cole delight in the surf, laughing and running…because you weren’t there. My dream crushed by the cancer that took you. The beach was always the place I would enjoy with my boys….racing the waves, jumping the surf, learning to “surf” the waves. It was never going to be the place where I’ve been choking back crushing heartbreak to make sure my kids don’t see the searing pain in my heart because one of my kids has died.

I’ve been doing pretty good but today is particularly hard. I don’t know why but the emotions are fighting me today…wanting to let loose. So I here I sit, writing to you about my heartache in the hopes that I can get some of the pain out so I can return to the beach and/or pool with some semblance of composure and get back to the joy because there is also so much joy here. I love it…watching my boys laugh and explore new things. So I will go put you aside old blog and my broken heart and go back…go back to my boys and enjoy all their new discoveries and the signs from sweet Declan letting us know he’s here joining in the fun.

I miss you baby.

Walking into the past

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I’m traveling for business today and as is customary, I attempted to book my hotel room in conjunction with my co-workers. The hotel was sold out so I booked another…no biggie. I had the rental car so we drove to the first hotel and decided to check if a room had opened up; as luck would have it, one did! Yay, much less coordinating to do!

So I bid my co-worker fairwell and opened the door to my room…and the past because I just walked back into Houston. It didn’t even dawn on me this was a Residence Inn, the same place we called home for 6 weeks last summer. Maybe I wouldn’t have if the decor wasn’t identical to our rooms last year but it is. The same kitchen with the short fridge, the same desk, the same hunter green couch with gold and maroon stripes…same as the one we used to lay on with Declan and spend snuggle time together. Baby, you were everywhere! I could see your meds in the fridge, see your Daddy playing with you, spending time with your brothers, remembering the days and nights we spent there…praying what we were doing was curing, not harming you. Little did we know the battle we were fighting was taking a turn, a silent and deadly turn…

OMG, how can I stay here? I won’t make it. I can’t be here alone with all of these memories. Of course I can’t leave, well I mean I could but then I have to explain why and I don’t want to go through all that. Plus, am I going to run from this whenever it gets uncomfortable? No, of course not. So I’m trying hard to not feel sad but to think of the great times we had enjoying you last year. Remembering how much time we got to spend with you. I’m not sure how well I’ll sleep tonight because of this but I guess it’s just another step down the path. (Gosh I wish your Daddy was here with me.)

Rainbows and you

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Brady was out back playing with the hose. He was spraying the windows while I was inside…I walked over because I thought he was trying to get my attention. He wasn’t. He was being a boy. He was playing with the hose spraying water up in the air watching it, with those wondered eyes of a child, fall back to earth. As I was watching him a rainbow came over his face (multiple times) and, of course, I thought of you. I know the physics of it but I also knew it was you. You playing with your brother…and my heart was simultaneously warmed and heartbroken. So very delighted that you were playing with your brother, enjoying what every little boy and his brother should enjoy but so very heartbroken, for us both, that you weren’t actually by his side.

I miss you but thank you for letting me know you are enjoying your brothers.

Why we ask for your vote. In another Mother’s, so perfectly written, words.

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My dear friend, Lora, who so lovingly took care of Declan and his Physical Therapy needs during his stay at INOVA, has written a beautiful note on her Facebook page about why we do what we do and why we’re asking for your votes.

This is Lora and Declan

I found her words to be perfect. So true. While our journey’s were completely different from the perspective of outcome, our heartfelt desire to ensure your child (or niece/nephew or grandchild or friend) doesn’t go through what we have gone through is sincere. Believe me, it is sincere. I think I can speak for most parents who have watched a child battle cancer, regardless of the outcome the battle still rages on.

The battle could be the emotional scars carved into our collective psyche’s or the daily battle children wage against the late effects of the very treatments that saved their lives (and these aren’t light…heart conditions, blood disorders, learning disabilities, physical disabilities, even chemo enduced secondary cancers…and then there’s the emotion scars, I can’t begin to fathom) or the emotional toll taken on a family who fights with all their might to save their child, only to lose in the worst way possible; who struggle daily (sometimes minute to minute) to come to terms with a loss that cannot be wholly understood.

It is BECAUSE we walked these paths, this collective path of childhood cancer, that we fight for YOUR child. It’s not for accolaides, it’s not to make us feel better, it is for no other reason than we would not wish this world on our worst enemy…truly. Truly.

Please take a minute to read Lora’s words. I wish I had come up with them. They are perfect. God bless you Lora!

BTW…this is sweet Maria.

For Your Children

by Lora Jackle on Friday, July 8, 2011 at 10:23pm

My wonderful and esteemed Facebook friends….tonight, I write a note to ask your help. Many of you have seen my Facebook posts about the Vivint Gives Back project, and my messages imploring you to vote for Journey 4 A Cure. This non-profit was created to raise money for pediatric cancer research. For those of you who have taken the time to read about Journey 4 A Cure, you have already learned about the great work it has already done to raise money to look for a more effective and less life-altering treatment for pediatric cancers. For those of you who haven’t…check out www.Journey4ACure.com, it’s truly amazing.

As I thought about this note when I was getting ready for work this morning, I realized something. All along, I have asked for your help, because of my daughter, who beat a type of cancer with incredibly gruesome odds. I have asked that you help Journey 4 A Cure to win a grant from Vivint because of children like my daughter, children like Declan (whose battle was the reason that Journey 4 A Cure is in existence). But…my daughter and Declan….they don’t need your help. Maria has been in remission for 3 1/2 years, and Declan lost his battle to brain cancer almost a year ago. The children who need your help could be anyone….your child, your nieces or nephews, your grandchildren, your patients, your neighbors. It could be a stranger, and many of you are lucky enough that it will be. But it could be anyone. 1 in 300 children will be diagnosed with pediatric cancer before their 20th birthday. I went a little further and did the math today…I have roughly 600 Facebook Friends. If each Facebook friend had 2 children (about the average per family), and those two children had 2 children (4 grandchildren), and say each of my Facebook friends had 4 nieces and nephews….that is 4 children, 8 grandchildren, 8 nieces and nephews of friends who will get cancer before their 20th birthday. 1:5 of them won’t survive. 3 out of the 5 who survive will have life-altering consequences of high-dose chemotherapy. They, like Maria, may have feeding tubes, deficiencies of vital/life-sustaining blood components, chronic lung damage. They will have developmental delays, learning disabilities, social and emotional challenges.

If it was your child, grandchild, niece or nephew fighting cancer, you’d vote every day. You’d ask all of your friends and family to vote every day, and they would. But I’ll give you one better….if it was your child fighting cancer, you’d pray and hope that someone had already done the work, that the voting was completed, the money was granted to Journey 4 A Cure, and that a better, more effective, less life-altering cure was already found for your children. Declan’s family has already done the work by creating Journey 4 A Cure. They have lost their child, every parent’s worst nightmare, and still, they fight for yours. I support Journey 4 A Cure, not for my child, but for yours. Not to ease my family’s pain, for we have already fought this fight, but to save your family from pain.

Today I am asking one thing. Please join me in the fight for a better future for your children. Copy the link below and vote today, and every day until August 27th. Our children thank you!

http://www.vivint.com/givesbackproject/charity/1262

Cutting ties to the past

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Sounds much more ominous than what I’m about to type but I wish someone would tell my heart.

I’m cutting my hair tonight. (Some might add, finally!) I haven’t had it officially cut (save the trim I got before the wake) or highlighted (and my heavens it needs it) or professionally handled since February 14th of 2009. That was the day Stan surprised me with a Valentine’s Day at the spa; while he secretly whisked the boys away for their Valentine’s Day shoot. The one which produced that now very recognizable and deliciously adorable picture of Declan in his little blue sweater vest, smiling his sweet Declan smile.

As you all know, Declan was diagnosed on March 9th and from that day forward it was not a priority. Then after he died it just didn’t seem like a priority either…many days it was a victory to just get it (or me) washed. Right now, my hair is long…longer than it’s been since I was a kid…longer than my thin, stringy hair should be. So why? Why am I hanging on to this decidedly retro “do” (and not retro ‘cool’ but retro ‘back of the consignment shop sale rack retro’)? I thought about it for awhile, tried to kid myself into thinking I could style it and make it ‘all purty like’ but I’m not that girl. I never have been, I’ve tried but it’s just not me. So why? Why am I keeping it and avoiding what seems so completely innocous?

I’ll tell you why because it’s one of the last things I know I shared with Declan. Yes, I’ve washed it a couple hundred times since he died but that doesn’t matter in my head right now. I shared it with him. He held it. I tickled his sweet face with it and it made him laugh. I had it with him. And now I don’t have him. But I have this hair. Silly but I can’t tell you how much of this decidely silly stuff is trips me up and for some reason this is a big one.

This is where the head and heart battle me. I’m a reasonable person…Stan, stop shaking your head ;) …I can reason why I’m in this place but it’s the heart that leads me back to the comfort piece of it. The completely nonsensical place where my little broken heart lives.

So tonight my wonderful sister-in-law is cutting my hair…the only place I would or could go…because I know it will be hard to feel those hairs fall away from my shoulders and I know they (I’m sure my brother and their kids will be there) will understand why the tears will flow…just as they are right now.