Today at work, my coworker I haven’t seen in a while, walked up to me and gave me a big hug “So sorry. Diagnosis day.” I was taken aback, as most people try not to mention days that are or can be difficult for me. I normally don’t show emotion at work (put on that happy face and all) and not much of a hugger. Yet I caught myself molding into her and really feeling her emotion toward me of how significant that day is. I truly appreciated her words and action. I began thinking about the people that surround me, that surround my family. I realized I allowed my fog and depression to blind me. I was completely aware and appreciative of everything people have done for us, but I don’t think the full depth of it really sunk in.
The friend who listened quietly while I sobbed on the phone after Madox’s diagnosis. I barely said anything. She quietly stayed on the line allowing me to cry.
My old coworkers organizing a food drive during Madox’s battle so we didn’t have to worry about cooking.
My friend showing up at midnight without me asking, to help me suction Madox as I was panicking I couldn’t get his secretions clear.
Our friend bringing a basket of food to the ICU for us, to ensure we had something on hand to snack on so we didn’t need to leave Madox.
My in-laws who were feeling helpless and broken, cooking for us and tending to Valin so Marco and I could concentrate on Madox’s care.
Blankets and pillows made from photos of our family.
Artwork of our boys, to hang proudly on our wall.
A breast cancer fighter and her husband rallying with us to bring awareness and raise funds for DIPG, all while she was fighting her own cancer battle.
A momma fighting leukemia and a bone marrow transplant but found the strength and time to join our events and even tried baking for our bake sale.
My group of friends who continually invite me to outings, and never get annoyed or angry with me when I cancel last minute.
Masters at Tactical TaeKwondo presenting Madox with a black belt for bravery during his battle.
Neighbour donating her commissions of her small business to Madox’s Warriors every September.
The many moms of children who were in Madox’s grade/class I never knew until after he died. I feel the love and connection from this amazing group, which saddens me I didn’t get to know them when I was my original self. They surround us with unwavering support.
Children we know and don’t know, donating their birthday money to Madox’s Warriors. Feeling the connection to want to help our cause.
The family who we connected with due to both our children battling brain cancer at the same time. They don’t shy away from saying Madox’s name, for fighting for our cause, and sending me uplifting messages when they know I am having a difficult time.
The repeat participants at many of our events. The list goes on and on and on.
I have always seen you, but I finally fully see you. I always thought we were alone in Madox’s fight. Now I see I secluded myself into thinking we were in this alone. I lost myself, broken and angry. I did not recognize myself, so it was difficult for me to recognize the love around us. I am feeling everyones embrace. Thank you for standing by us, and sharing your light.
5 years today. 5 years ago today we heard those words no parent wants to hear. 5 years ago we met a murderer, and it was attacking our son.
No length of time will soften the hurt. We will forever remember that day, that specific moment. That walk down the bright hospital hallway. The look on the doctors faces. The dread in my heart. The words…. oh those devastating words.
The day of diagnosis will always hang over our heads. The memories. The life changing word. The immediate loss felt.
Some will say 5 years is a long time. A parent who has buried their child will say it’s too long. Time changes very little. It certainly does not heal all wounds.
My heart is very heavy with all the memories flashing in and out of my mind. I wish I could have prevented this. I wish I could have saved you.
Another holiday season is upon us. While many are going through traditions, and family time, the bereaved are trying to navigate through it all. Many contemplate how to celebrate this holiday, if at all. The first year after a loved one has passed is always the most difficult. The loneliness felt throughout the family. As a parent, the loneliness is screaming. Unpacking ornaments that hold significant memories and meaning is an explosion of emotions. Looking at the empty chair where a little body should sit for family dinner. Gifts under the tree without a certain name on the label. Initially it is very difficult to want to celebrate anything, whether you’ve been grieving the first year or a long time.
As time passes, the holidays become easier to bear. The old traditions either stay or change enough that the hurt is not in the forefront as before. Parents choose how and when to join in the festivities, trying to prevent added anguish. Christmas cards may not be sent. Avoidance of holiday parties. Spending Christmas day with only your spouse and surviving children. Whatever is needed to cope, it is correct for you. Sometimes we need to hide away from everyone and have a cry to let the pain out.
Many try to celebrate as best to tribute their missing loved one. Some spend time at the plot (as we do), while others bring the urn to family gatherings. Continue to remember your loved one. Share stories, laughter and memories with each other. Go skating, watch a movie or play board games, if that’s what your love would have liked to do. Travel, to get away from it all. Some call it running away. I think of it as an escape from all the past holiday memories that can bring hurt and pain along with it. Whatever you do, know that it is right for you and your family. Do what you know will help you get through a difficult season. Everyone is different and no one has a right to judge. Just take time for yourself. We all grieve different and there is no right or wrong way to grieve. Be kind to yourself, because we still have our journey on this rock.
From our family to yours, Merry Christmas, Happy Hanukkah and all happy
holidays in the new year.
Holidays don’t get easier, regardless how long time has passed. Halloween was a month ago and I felt it was just as hard as previous years. Past years I tried so hard to fake it by decorating the house inside and out. Pumpkins would be carved days before. Costumes planned and purchased. Sugar cookies baked and decorated. The excitement was in the air. This year I felt such a weight on me. It felt so heavy, so constricting. Even though I tried to encourage myself into doing our normal traditions, I ended up failing and nothing ended up happening.
No cookies were baked. Our home wasn’t decorated outside with only a few things inside. Our pumpkins were purchased 2 days before, and carved the night before halloween. Costumes were not on the radar, throwing together something we found at home the day of. It didn’t seem like I was the only one feeling this way, as Marco and Valin weren’t pushing for anything either. We just kept moving through the motions of the every day.
What many of you don’t understand, is how much energy and work it takes to fake going through the passing of life. It sounds easy to just go along with it all but it is truly exhausting. The simplicity of even getting up out of bed every morning can take a lot of coaxing from oneself. Movement for purpose takes thought and reasoning from those who have lost a child. Knowing the need to converse with people, to look happy, to laugh, when all you feel is dead inside is very difficult.
Being affected by such a loss will never leave us. We will never forget who our child was, could be and could never be. We will not forget the day of diagnosis, the fight he had, the slow and terrifying decline and of course his death. Those days will never leave us. Yet here we are. Getting up every morning, going to work and living life like nothing ever happened.
When you hear the term PTSD, do you only think about people returning from war? That seems to be the most common association with that term; veterans and military. PTSD affects so many other people. People you may not have thought of.
I have post traumatic stress disorder. No I was never diagnosed, but I really don’t need a doctor to tell me something so obvious. The Mayo Clinic defines it as “Post-traumatic stress disorder (PTSD) is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.” Many parents who have a child diagnosed with cancer (or any life altering illness) show symptoms of PTSD. The worst moments are usually around the diagnosis day, certain treatments and like myself, the final days of your child’s life. I have many moments of anxiety from past memories, nightmares that wakes me, and the never ending flashbacks. Then there are occasions that I didn’t think would affect me, but then the rug is pulled out from under me and I am gasping for air.
A few weeks ago, my son Valin needed an MRI on his knee. Just a routine MRI to see where the pain is stemming from. I was working, so Marco took Valin. I wanted to be there, but knew all we would be doing is sitting in the waiting area until the scan was done. That entire day I had a knot in my gut with worry. Marco kept telling me everything was fine and he would send me photos of Valin in the machine. My heart ached seeing the photos, as all the memories of Madox laying on the table getting his scan came flooding back to me. I started to sweat. The last time one of my boys were having an MRI, we received a cancer diagnosis. I was getting in my head and panicking. Then an hour later Marco texts me “heading home,” and all my tensions released. I immediately thought ‘they wouldn’t have sent them home if they saw anything.’ My racing heart slowed. I was able to catch my breath. My concentration on my current task returned. My anxiety attack left me as quickly as it arrived.
The following day I was working when I received a call from Valin’s doctors office. I missed the call, but when I noticed the number with no message, my heart began to race again. All the worst case scenarios came slamming into my thoughts. Then all the memories of Madox’s battle with cancer but now I was seeing Valin’s face instead of Madox’s. I called the office back 3-4 times until finally the physician called me back. “Hello Ms. Suzio? This is Dr. M. I just wanted to talk to you about Valin’s MRI results.” Panic. Fear. Dread. Thoughts of burying another son. “Everything looks good..” Silence. I didn’t hear anything else after that. My body released. Tears flowed freely. My son is fine. He will not go through pain and torture. He will grow up!
PTSD ebbs and flows. Many times knowing the triggers, and times not. The recurrent traumatic memories we all lived with and witnessed with Madox will never leave me. Trying to control them will forever be my toughest challenge. We live life as best we can, but there are simple moments that catch us off guard. Moments that are seen as day to day events to most parents, can be difficult stages to navigate for others. Living with PTSD will be a lifelong struggle.