People You Need To Meet #35: Ellen Grant

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JustinElliot

My son, Justin Elliott, lived 21 years, 3 months, 4 days and 4 and 1/2 hours. He went through a lot during his young life. When he was four, I divorced his father. Three years later, I moved him to a new town when I married Ed. Justin was almost 14 when I had to hold him while his father was taken off life support and immediately passed away.

Despite all this he grew up into an amazing young man. Justin had a plan, and the world was waiting for him. Education was extremely important to him. He decided to go away to college, attending a dual enrollment program, instead of completing his senior year. I was devastated because I wouldn’t get to enjoy being the mom of a senior. Turned out to be one the best decisions Justin made. That fall Justin matured and thrived. He loved college. Loved his professors, and loved being away from home!! He traveled, by himself, not even 18 years old, to interview at NYU. New York City is a far cry from the little town of Ellijay, Georgia. Of course he was accepted. I thought he should go to Georgia, but Justin was determined to be different. I can’t describe how proud I was of my young man. We celebrated his 18th birthday, and a month later the glass of life shattered into a million pieces.

Justin was home for the weekend. He called me, and said he had a horrible headache and was nauseated. I think now that I knew it was brain related. My mother had two aneurysms, and when something goes on in your head you get sick. But that couldn’t be possible. This was my healthy, athletic 18 year old. It must be a migraine, my sister had them. I understand the first one can be really bad. After several hours nothing was helping, and we headed to the emergency room. After a CT scan the doctor told me Justin had an aneurysm. I remember holding on to the bed rail then going to the bathroom so Justin would not see me hysterical. The memory of Justin being strapped into a helicopter at one in the morning is something I will never forget. Then followed several days of excruciating pain, lots of tests, too many different doctors, and no one who could tell us what was wrong. Then, a specialized MRI showed a tumor. Surgery was scheduled. They said the tumor was encapsulated. They would go in, pluck it out and we’d be on our merry way. Not. February 28th around 5:30, a doctor had to tell me and a huge crowd of family and friends that my only child had 6 months to one year to live. Another memory seared on my brain.

I won’t go into all the details but the next 3 years were filled with chemo, radiation, a year of being on a trial drug, more radiation, many other drugs, more surgery and way too many trips to doctors. Despite having to endure all of this Justin lived his life to the fullest, continuing with college, attending sporting events, going on trips and trying live a normal life.

What I wish I knew. I wish I didn’t know any of it. I wish I didn’t know the pain that Justin would go through. I wish I didn’t have to watch his dreams be shattered. I wish I didn’t know that Justin was more concerned about Ed and I watching him die than he was. I wish I didn’t have to bring him home from NYU, and I really wish I didn’t have to watch as those silent tears rolled down his cheeks on our way home from Athens when we were told the tumors had ” exploded with growth” and the end of out journey was near.

I wish I knew how to be the mother of a very independent young man with brain cancer. How can you let your child go to school a thousand miles away with brain cancer? How can you let him be two hours away, getting himself to treatments and doctor appointments, getting prescriptions filled? He was 18 and legally in charge. As hard as it was, I don’t regret letting him go. What if I had insisted that he stay home while everyone else was off going to college or working and definitely not being home with the parents? Justin wouldn’t let me take care of him. He just wanted to be normal, and he didn’t want anything to remind him that he had cancer. I will have to say that his favorite phrase was “fuck cancer”. Justin actually had a shirt with that on it. He wore it to doctor appointments. The only other time he would mention the word was when I asked him to unload the dishwasher. “I can’t, I have cancer!”

I wish I knew what he kept to himself during those years with cancer. I wish he would have talked to me about it. To this day I don’t know if he ever confided in anyone. His “other” mother, as I fondly call my best friend, texted him those last few weeks. She asked him if he was scared. His reply, “we aren’t supposed to talk about that”.

I could write volumes about Justin, the what ifs and the whys. He is my first thought when I wake and the last when I go to sleep. I will miss seeing him fall in love, get married and have children. I won’t get to see him have an amazing career and make his mark on this world. My biggest fear is that his memory will fade. I am so scared he will be forgotten. Ironically, as I have been writing this, I had to stop and attend a memorial service for Justin’s youth leader. It was much harder than I thought. Justin thrived with Leanne and “came into his own” as he grew up in the church with her. He was mentioned at the end of one of the eulogies today.

I am rambling as I have become accustomed to do. So what I really wish I knew:

How lonely I would be when it was all over. I am very social and having a house filled with family, friends and kids was great medicine for me. The house is now too quiet.

I wish I knew how much people really do care.

I wish I knew how much Justin loved me and what I really meant to him.

I wish I knew that I would become involved with some extraordinary women who would understand what I have been through and will for the rest of my life.

And finally, what I know know:

I am forever changed, and in some ways, for the better. There is a definite line in the sand: before diagnosis and after. I view life and make choices differently now. There is so much that just doesn’t matter anymore. And out of the darkness there will be light again.

4 thoughts on “People You Need To Meet #35: Ellen Grant

  1. Oh my God, Ellen, it is like living
    this all over again with my son. Lives changed & sons gone too soon. You should know he loved you, how could he not? You let him live his life on his terms.

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  2. Ellen, it is wonderful. I sit there and think God forbid it is ever me would I still be able to let my child thrive so far away. I am amazed at the mother you are, and the freedom you gave Justin to be able to experience life on his terms. I have know doubt that he loved you immensely because you gave him wings and allowed him to be independent. He worried more about you and Ed….because you were his #1. Sadly, I have never had the pleasure to meet you or Justin, but please know he will never be forgotten. When Cindy posted this I knew who that picture was before I even focused on what the post was about. His friends and family may all seem like they have moved on but I am certain there is not a day that goes by that they don’t think of him, but they just don’t voice it. I think in our society we are suppose to be strong and move forward rarely speaking of those that have left us to soon, but in reality we are all still remembering and loving them in silence. Please know these things without a doubt. Sending you love and hugs.

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  3. Ellen, i had a lump in my throat, tears in my eyes as I read this. You are always in my thoughts. As a mom, I cannot even begin to imagine how you feel or what all you’ve been through in dealing with the loss of your child. You are an AWESOME mom who let Justin live his life to the fullest and that took lots of courage and strength. He will never be forgotten – he made some great memories with lots of friends.

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  4. Ellen,
    I sit here with tears running down my face as your story is mine too. Only it was my daughter Kathryn who was 19 when rediagnosed with a GBM. She too wanted to be normal and go to college. That was the best thing we ever did for her. She came home midway through her freshman year for surgery and radiation and of course chemo. She took summer classes to catch up so she could graduate on time with her friends. Then she enjoyed a full year of college her 2nd year coming home every other week to get her IV chemo. Her brother drove her the 135 miles and planned his life around her treatments. Her third year of college was cut short and she came home mid October and we lost her that February 3 days before her 21st birthday. I understand the allowance to go to college even miles away. That was your sons wish as it was my daughters wish as well. It was the right thing to do. I too have the same question you have as we did not talk about fear or death. We lived life as if it were to go on as we hoped it would. Even until the day before she passed I believed there would be a future. I will not see my beautiful daughter marry. I will not see her become the childlife specialist she dreamed of becoming to help those children with cancer. she wanted to be their hope and inspiration. She was small in stature but had the heart of a giant. I too will miss her for ever. I also have that fear of memories fading. Your son will be with you always as I have found Kathryn to be with me. In spirit she helps me and I found all I have to do is ask. We should not have lost our children to cancer and for that I will agree with you son, FUCK CANCER!!!

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