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
Inseparable buddies
He was so excited to see a coke bottle with his brother's name on it.
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.
Sending our love to heaven on Connor’s 8th birthday.

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