If I Had One Day With Him

I wanted to share the poem I've been working on. JR was great at writing poems so I thought I'd give one a try. It's a little rough but expresses how we are feeling at the moment. Thanks for reading!

If I Had One Day With Him

If I had one day with him which day would I choose?

Easter or Christmas or his birthday cruise?

Would I hold him and love him or let him run free?

Let him play baseball and climb up a tree?

Listen while he giggles with our new little dog

Try the new computer and have him read my blog

Go on an adventure on his bike with his dad

Buy candy and soda like he always had.

Would he want to dance crazy with his little sis

Or just run with the boys who I know he must miss

Play man hunt and basketball then the Buckner's new pool

Or go to T and Logan’s and break his bedtime rule

Listen to Godfather’s same silly lines

Ask Uncle Richie to read poems at bedtime

Show him the changes we've made to the house

Show him the spot where we buried his mouse

Hang in his room that's exactly the same

Bring him to star in his team’s baseball game

Buy him new cleats cause he outgrew his old

And a bike and some clothes and whatever I'm told

Go feed the lamas or help paint the wall

Go to the beach and watch the crabs crawl

Take out a kite at Cuttyhunk beach

Run down for ice cream - it's just within reach

Go to the diner for a shake and grilled cheese

And French fries and pancakes and whatever he please

Watch him catch butterflies with a nice brand new net

And a jar full of of fireflies to complete the set

Go back to Sloan Kettering to say “Thanks!” to the docs

The cancers all gone now I've regrown my locks

My scars they have vanished my port's disappeared

My family is happy and gone are their tears

Admire his shoulders for now they are broad

His legs still are skinny I love his whole bod

Bring him to Holmes School to go to fifth grade

See what would happen if he had just stayed

Bring home for me a Mother’s Day poem

Return books to the library you had out on loan

Give me a flash of smiling eyes big and blue

See if he’s grown as big as Matthew

Would the girls think he's cute? Would Holm make him laugh?

Would he still try the honeysuckle on the school path?

Would he play some lacrosse? Would he make the team?

Would he still be the boy I see in my dreams?

Or stay home from school cause it's snowing outside

Build Charlie a snowman and take my sled for a ride

I can't believe Julia can fit into my boots

And who is this Bailey at Kalle and Luke’s?

Buy him a boat cause he's in Opti 3

Beat Andrew and Lily in race #3

Picnic Point barbecue, corn on the cob

Fourth of July fireworks with the AYC mob

Go to his garden and dig in some plants

Talk to his teacher and watch him advance

Schedule a play date with friend Ryan Q and Ryan M

Or with Justin or Liam or with his friend Ben

Have Logan come over and go to the bog

Get his feet dirty, trip over a log

Finish the day by throwing some rocks

Feeding the elephants, playing with blocks?

Dinner with buddies Antoine and Nick

Daddy’s grilled skirt steaks and you get your pick

Addie will give you her one last little sweet

And let you have more counting Halloween treats

Hang out with Wrigley and the whole Servas bunch

Play some badminton have watermelon for lunch

He'd need a good hour to wander the hood

Meeting Bromley and Harley and Duffy - so good!

Would he care about Legos or Webkinz - oh please

He'd rather go shopping for stacks of CD's

Buy a Father's Day surprise while we're out at the store

Snow Patrol, Nickelback, Daughtry and more

That day that I long for I think it's today

Or maybe three years ago when he was okay

Or way in the future when he is a dad

And we could remember the good times we've had

Which day would I chose if I had the chance

Graduation or christening or his wedding day dance?

I hold all his memories so close to my heart

Still dream of his future and each brand new start

Wish he could be just a regular boy

That was all that he wanted he brought us such joy

All these heartbreaking thoughts swirl round in my head

What would life be like if he were cured instead

I wouldn't be dreading the 16th of Julys

Or designing his headstone to mark where he lies

I'd be planning his birthday for this coming fall

And watching his changes and calling him tall

His sister is almost as old as him now

His parents look older and hold onto a vow

Meet him in heaven and watch him run free

Love him and honor his his whole family

He has his new parents now aunt Claire and now Rich

Uncle Ron takes him camping and throws him a pitch

His new friend Mikey is on second base

Abraham Lincoln covers home plate

Grammie Sue has him over to meet Grandpa Hal

Herman and Eleanor are who he calls Pals

He likes to take care of his baby cousin Doug

And cuddle with Sarah and give her a hug

When I sit with my husband in such disbelief

Why would God give us a life full of grief?

We'll never have answers or know what his life would be like

At Nine and three quarters he's just past a tike

All we can do now is honor his name

And stop trying to figure out who is to blame

I just know I love him and miss him so much

Long for his laughter his face and his touch

A Little Information Helps

I cannot believe that a year has passed since I last wrote. I haven't been able to face this blog. For some reason today I felt like sitting down and getting to it. Perhaps I'm just avoiding other things that I should be doing but I hope this becomes a more frequent event.

Not a lot has really happened with a few notable exceptions. We added a key new family member in our little miniature dachshund named Buddy. Addie wanted a boy dog and wanted to name him after Jim's nickname for JR, hence Buddy. Cousin Chris & Andrea's neighbor Denis heard our story and was thrilled to give us our fun-loving and energetic little puppy and we have all been delighted with him. He's been a great addition and is the subject of Addie's blog-style newsletter named the Buddy Chronicles, complete with articles and dress-up pictures. He's accompanied us on several trips and is great company.

Addie and I went to Paris to visit my niece Lindsay who was studying over there last Spring. We spent a week last summer with our dear friends the Trepps down in the Outer Banks. We escaped Christmas with a trip to the Dominican Republic this past December and avoided the earthquake in Haiti by a mere two weeks. Addie started fourth grade and has been knocking the cover off the ball at school. Kimberly's mother survived a bizarre illness and we lost our neighbor Frank, our friend Claire and my grandmother Sue. Many more things would happen over the year and this could end up sounding like a Christmas card insert but I'd rather get back to the real subject at hand; are our hearts mending?

My first reaction to a question like this is a resounding "no" but things are a little bit different. I am not sure if this is an indication of mending but more like getting used to living with pain. Jim and I are still dazed and confused and asking ourselves "Could it really be true?" and "Why was it JR?" I remember one of the doctors telling me that about 180 cases of pediatric GBM's (glioblastoma multiforme) occur each year. The odds of that happening to JR are virtually impossible yet here we are without him. It doesn't make any sense. Our friends-in-mourning the Czechs also lost their son to a different type of brain tumor that shows up in about 150 children a year. Even more impossible but yet they are in our same predicament. How does anyone process this and make sense of it? We certainly have no clue.

About a month ago, I attended a presentation, accompanied by my BFF Kimberly, on cancer gene therapy for brain cancer. Sounds like something that would make most people run screaming but for someone in my situation, it was very informative and helped me put a few things to rest. For example, one of the first things the panel of highly-qualified experts in this field of research pointed out was that GBM's (the research disease of choice since it is so aggressive that they can attain results very quickly) are essentially 100% fatal. The standard of care can prolong life by a few months or so but there is no cure. I believe my last blog entry let you in on some of the uneasiness I have felt over my choices for medical care and some of my "If only I had tried this" worries. Knowing that there was nothing to stop JR from his horrible fate at least frees me of the guilt I feel for not finding a successful treatment program. It doesn't get him walking through the front door but unfortunately nothing I could have done would have yielded that result.

Another piece of information that I learned or perhaps confirmed was that with all the research through the past 40 years (GBM's are much more common in adults so research has forged ahead. Side note here - not 100% clear here as to whether or not the adult research is even relevant to pediatric GBM's but for the sake of argument we'll say it is) has not given anyone any information on why these tumors form. To this day, nobody has a clue. Again, so awful, but I can stop questioning every little thing I did for JR and wonder if it caused his illness. We may find out down the road that some crazy obvious lethal something or other is present in JR's room or in the brand of peanut butter that he liked but as for now, there is no known cause. Again, a little sigh of relief that I cannot blame myself repeatedly for causing JR harm but it again does not bring him back.

So where does that leave us? I think we are in a more pure form of both missing him and feeling very bad for him and how he spent the last months of his life. There are still so many unanswered questions but most of them now relate to what his experience was and how much did he suffer and what could we have done differently for him. I regret not taking his Make-A-Wish trip to Hawaii and not just totally going all-out every single day we had together. I wanted to keep things "normal" for him so that he felt secure and promised him that everything would be okay. The only thing we know for sure at this point in time is that we love our children and that will never end. I feel like there could be no-one in the world that could have more love than I do but I am sure I am in a huge subset of people on this Earth called parents. I also know that I will never get over the loss of JR. It's a proven fact amongst bereaved parents. How we handle it through the years remains a mystery but the first 19 months and 8 days has been heartbreaking. The key for me has been to make sure I have alone-time to allow my grief to happen. That and wine therapy. I have my wonderful little posse and I am so grateful.

I have so many stories to share about the amazing people that have shared with me as a result of our tragedy. I am now an absolute wealth of knowledge about people experiencing loss and each story is a gift. It is helpful to share stories. It is helpful to bring JR up in conversation. It is helpful to help someone else. Mostly, it is helpful to be around people who are not afraid to show that they try to understand and that they are remembering JR. Some of the most amazing support has come from people who didn't even know JR. In my next blog entry I will strive to relay some of these amazing stories. For now, thanks for taking the time to read my thoughts and for thinking about my son.