Three and a half years without him….

Connor’s ashes surrounded by his own Christmas tree covered by his beloved R2D2.

Friday marks three and a half years since his cancer robbed him of his life, along with its purity and innocence. My 5-year-old Connor died from a horrific type of brain cancer called DIPG.

I wish I can tell you that it gets easier to live without him. It does not. I wish I say the pain subsides, and we are doing okay. It does not, and we are not! That computation of time is agonizing to comprehend. It’s been 42 months, 1,277 days. The death of a child leaves an unnatural order of events for a parent, and this is perhaps the hardest to accept. The loss is life-altering and you simply never get over it.

My capacity for joy has dimmed.  My two living sons fill me with gratitude, and I love them with all my heart but there is a profound sorrow left by Connor’s absence. I grieve the loss of dreams. I grieve my ability to believe that all children grow up to be adults and parents leave this earth first.

When we were told his cancer is terminal, I thought I understood how hard it was to live without him. I had no idea! It’s worse than I ever anticipated. It’s unrelenting, crushing sadness that leaves you unable to function at times. Unless you have walked this path, it is hard to understand the depth of a grieving parent’s despair.   Child loss is isolating, too, because we have to navigate so much of pain alone.  Grief is as unique as the person feeling it.  Even when I escape it for a few hours, I am exhausted at the effort it takes to keep my composure.

I have a new perspective of what matters most and the people I choose to surround myself with.  A dear friend called it “cancer eyes” after his own diagnosis with terminal lung cancer. Cancer eyes are 20/20. You have the ability to see through people and narrow what’s truly important to you. Quickly, you shrink your world to include  people and things that bring you and those you love great joy. My child’s cancer and his death has also led to a tremendous personal change. I am not nearly as friendly meeting a stranger as I used to be, largely because the dreaded, “how many kids do you have?” question.  I’m also more irritable, sensitive to comments, guarded with what I share and bitter about losing my child.

Everything is tinged by his absence.

It’s a trying path to endure and navigate when you aren’t given a choice. It’s a constant battle between paralyzing sadness, anger, and exhaustion. I don’t wish this ache on a single living soul. What I do hope for is recognition from others just how important family and good friends continue to be.  We don’t want pity; we want understanding  and human compassion.

The biggest message I hope you take is that a grieving parent still need your love and support, even years after a loss.  

Perhaps Connor’s greatest legacy lives on in his brothers. I hold on to hope that they will grow up and thrive. I know in my heart that he will never be forgotten by all those that knew and loved him for the five years he graced this earth.  

This holiday season, hug your loved ones extra tight and tell them how much they mean to you because tomorrow is not guaranteed for any of us.

“I’ll love you forever,
I’ll like you for always,
as long as I’m living
my baby you’ll be.”

‘Love You Forever’, Robert Munsch (1986)

Recipe: Orange-pomegranate brussels sprouts with bacon

Orange-pomegranate Brussels sprouts with bacon.

I have been anticipating Thanksgiving for weeks. It will be a quiet one for us this year, but I always love to tweak our favorite recipes to make them even better.  This recipe has the perfect combination of sweet, salty and tart.

Ingredients: 

2 lbs of Brussels sprouts (cut in half and trimmed)

3 slices of bacon (cooked in Dutch oven with 2 Tsp of bacon fat saved)

1 orange (zested and juiced)

Seeds from one Pomegranate

1 teaspoon of a salt

½ teaspoon of pepper

Directions:

Combine Brussels sprouts, 2 Tablespoons of bacon fat, toss with salt and pepper. Roast at 375 degrees for 20-25 minutes.

Once Brussels sprouts are done, combine with orange juice, orange zest and pomegranate seeds. Add bacon and serve.

My food critics did not wait for this to be served in separate dishes before almost finishing it.

Tabouli recipe- family salad

My kitchen helpers.

Our kitchen is the heart of our home. We start our morning with coffee, milk & pancakes and end each evening catching up on our day there. Our meals are a family affair, some rushed, while others are at a more leisurely pace.  Our boys love good food, surprisingly, some are very healthy, too. Sometimes, just a smell of something brings good memories with my children.  Oddly enough, parsley seems to conger up some wonderful memories of the boys helping out in the kitchen.  It’s the main ingredient for our go- to family salad.  Cameron asked me to make it this week and I wanted to post here because Connor loved it, too!  Parsley is also packed with vitamin K, C & A and I think it’s a tasty alternative to a regular salad.  

PS  -when the kids are not looking, I love to enjoy it with sea salt and vinegar potato chips.

The ingredients are:

• 4 bunches of Parsley (stem removed)
• 1/4 cup of dry bulgur (found in any natural food store or an international market)
• 4 medium tomatoes
• 1/2 onion
• Juice from two lemons
• 2 table spoons of olive oil
• pinch of cayenne pepper (can be skipped if spice/heat is not desired)

Soak bulgur in water and let sit for 20-30 minutes.  It will expand as water is absorbed.  after 20-30 minutes Clean and dry parsley (I use a salad spinner). Place parsley in food processor and pulse 5-10 times to reach a medium consistency.   Chop onions (use cutting board or food processor)

Dice tomatoes 

Juice two whole lemons

Combine parsley, onion, tomatoes & lemon. Add bulgur

mix to combine….. Finish with olive oil & (and salt & cayenne if desired).

Enjoy!

The siblings left behind

This blog has been approved by Cameron before posting.

My older two boys are only 22 months apart. They grew up together, are the best friends and were inseparable prior to cancer taking one of them away. Siblings of children with cancer are often the forgotten victims of childhood cancer. After our son Connor’s DIPG diagnosis, we chose not to tell him or his older brother Cameron about the gravity of that cancer. That DIPG will ultimately kill Connor, slowly trapping him within his own body. We allowed the concepts of tumor, cancer and radiation to become part of the boys’ vocabulary and nothing more. We also took clues from them. We were fortunate to have 15 great months (called a honeymoon period in DIPG terms) until things needed to be brought up again. With the progression of Connor’s tumor, it became clear we needed to tell Cameron what was happening (Connor already knew without ever asking). It was one of the hardest conversations I have EVER had to have with my son. How can you possibly be prepared to tell your seven-year-old son that his younger brother is going to die? This was not in any parenting manual (more on this in a future blog, when I am ready to put those times into written words).

Quite frankly, I thought Cameron handled it well. Immediately following Connor’s horrible death, he needed my undivided attention, which had been absent for a very long time while I had nursed his dying brother for months prior. He was understandably angry with me for neglecting him during that tumultuous period and all I can do is explain to him why, over and over again. We talked and connected non-stop about his feelings, as he needed. I was open about my feelings and showed him what grief and sadness looked like; however, I made sure he had times of “new” normalcy where we enjoyed his favorite activities. Looking backward, he was under the fog that protected us all during those first days and months after loss.

A year ago, Cameron told me he thought Connor was going to come back and that his death was not permanent. He also said he felt guilt for possibly causing his death, fear it will happen to him and anger it impacted his brother.

Adjusting to life without his best friend has been tough in the three years since Connor died. There were many moments of uncontrollable grief and tears that stream without warning. Now 10, Cameron has changed, A LOT! I have seen countless hours of sadness, withdrawal and loneliness despite a new little brother that brings us all so much joy. Cameron has a keen awareness of the value of health and how quickly it can all change. He has anxiety about the recent reports of Ebola.  Today, while on the way to school, he reminded me that Connor has been gone 1,234 days.  How long has he been counting the days?  Time is a luxury that children shouldn’t think about. Sadly, in our house, we are all aware of passing time, and we do not take anything for granted. No matter what I do, I cannot save him from the sadness and pain that his short life has witnessed. I have seen a big shift in his demeanor lately. I know that children process grief very differently than adults do. He is re-processing the death of his brother and seeing it in a different light as he reaches a new developmental milestone. All of this coinciding with his coming of age that includes hormone surges, pimples, growth spurts of awkwardness, school getting harder and sports getting more competitive.

In knowing these changes are happening, some of which are normal childhood development (the hormonal ones); I decided to sign up for a class for mothers of sons to derive tools for more effective communications. While some of these changes are hormonal, others are grief-related.  Here are some of the methods we continue to use:

I have talked to all his school teachers about what I see happening and asked them to please be sensitive and notify us if they see things out of the ordinary for his age group.

We have 200 one-minute conversations about his feelings. These conversations usually happen while we are driving (not face to face) and I have his undivided time.

I tell him if he feels angry, sad or mad that it is an okay reaction to both puberty and grief.

His questions are discussed often and in many different ways. He may not understand a concept now but in a few months he may reach a new level of maturity.

My husband and I are consistently available to talk.

The grief road continues to be hard to navigate. Underneath that shy smile, Cameron continues to try to make sense of his world as he comes of age.  My heart breaks as I witness my son’s deep sadness on top of our own grief over the loss of our beautiful Connor.

Inseparable buddies

He was so excited to see a coke bottle with his brother’s name on it.

Sending our love to heaven on Connor’s 8th birthday.