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.
First day of school is an exciting time for most kids and parents. For my kids, they get to see all their old friends again, their favourite teachers and get into a new routine. For us as parents, we felt it as a milestone of starting a new grade, excited for the new things they will learn and the independence with it. Of course I had my mom moments when I was ready for school to start, but I never felt an excitement and celebratory feeling of “getting them out of my hair.” My boys were pretty good and fun to be around. When I had crazy brain from their energy, I had work as my temporary escape. I was always sad the summer was over.
What happens when the first day of school comes along? The traditional first day of school photos, of course. We always took one but never of the boys separately. I wish we took more of them together and much more alone on these milestone days. Social media sites are littered with photos of kids on their first day of school. Why wouldn’t it be? There are so many proud parents wanting to show their kids off. We were those parents once too. Now, these photos hurt my heart so deeply knowing I can’t post my own photos of my boys. Instead Valin stands in the same spot he use to stand with his little brother Madox.
Now we take a photo of Valin standing by himself, then watch him cycle away to school alone. He no longer has his little brother as his shadow, which we know he misses. I get in my car, and drive to visit my baby boy where he now lays without us. I sit next to his plot and sob, thinking about everything we are missing without him. Missing everything he brought to our lives. Madox should be starting grade 8 this year. He and his buddies would be the oldest kids in the school. Instead, he never made it to grade 4.
Not everyones first day of school photo is happy and elicits a smile when seen. Sometimes these photos hurts to see and brings a tear to your eyes. Sometimes the first day of school photos are at a cemetery. Sometimes, all you can do is cry.
The day has come and gone. The day you were stolen from us. People call it an ‘anniversary’ but I hardly think of it as that. Some people think it’s time to move on. I think those people are ignorant about grief, which I guess is good. Grieving a loved one is very hard on the mind and body. Nothing really has changed except that it has been 4 years since I saw your sweet face.
Leading up to this day has been really hard on me this year. I didn’t think it would hit this hard again, but it has. I haven’t eaten very much, and sleep was barely existent. I tried working out but I ended up crying thinking about your last week. I am so glad I took the week off work. I have no idea how I would have gotten through a day.
Memories of your last few days kept jumping into my mind randomly. How you hugged Valin for the last time. How all your family came to say their goodbyes. How you struggled to breathe. How panicked I was trying to control your pain and secretions, feeling like I failed you over and over again. Those moments are still clear in my mind. I can’t believe it’s been 4 years. I can’t believe I have to live the rest of my life without you in it. I don’t think I will ever get use to that thought.
This year I let Valin sleep while I drove down to your resting place. I just laid by your plot thinking about our fun and sad moments. I listened to some music that made me ache for you more. Even though I felt dark and gloomy, the sun was shining brightly. Valin was waiting for me when I got home and gave me a long hug. I know he misses you just as much as we do. My biggest fear is that he will forget you and the things you both did together. So we will continue to talk about you and share moments so we will never forget.
Poor dad had to work all day so we all went to your plot together in the evening. The sun was starting to set and a slight breeze was felt. We sat around your plot sharing stories and moments. Did you hear us? Even Valin shared your last words to him. I’m glad he remembers that moment, even though it was hard. It was nice to see a family of deer come out of the forest while we were there. I always find it calming to see the deer graze while we visit you.
Although we don’t visit you at your plot as often as we use to, I sit in your room often. I hope you hear me talking to you when I am there. Not a day goes by that we don’t think about you, and the time we have lost without you. These days are hard but we are trying to continue living our lives. You are never forgotten Madox. We may smile and laugh and enjoy our time together, but there will forever be a broken piece in our hearts for you. A piece that will never be repaired. A piece we will never forget.
We love you my favourite little guy XO
What does palliative care mean to you? It means different things to each of us, depending on if you had a loved one on palliative care or not. WHO defines it as: “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Wordy for sure. To me, palliative care means support. It means comfort. It means quality of life. It means the choice to stay at home. It means your family never feeling alone. It means care.
The hardest and easiest decision we made about Madox’s treatment was placing him on palliative care. Let me explain. The fear of your child dying is immediately embedded into your head when you are given the cancer diagnosis. Regardless of the type of cancer and the survival prognosis. It still elicits that fear for that 1% chance. For us, it was clear there was no other option but death. There was no hope, no real fight for survival. Only the fight to help Madox live his last months, weeks, days to the fullest and for it to be peaceful. A quality of life everyone deserves.
Palliative care wasn’t discussed or even mentioned prior to Madox’s last MRI in June 2014. We were trying alternative treatments, diet change and radiation prior to that. We didn’t want the word palliative hanging over his head until we felt it was necessary. That repeat MRI date changed everything. We were told the tumour not only grew to the original diagnosis size, but it had “cauliflowered” and began growing outward. That really explained why Madox was having so much neck and back pain. The tumour was growing down into his spine. The doctor barely got the words out about palliative care when I said we would sign the papers. It was a no brainer but so very very hard to accept. We needed to take a deep breath before signing. It was so final. So complete. The beginning of the end. Our son was dying, and will be dying soon.
Madox was placed on palliative care which allowed us to have a physician and nurse come to our home when we needed. Supplies were ordered and sent to our home such as a hospital bed, or commode. It allowed us to have access to stronger pain medication and unlimited support from the program. Allowing Madox to have his dignity and peace without dragging him around everywhere sitting in waiting rooms to see different specialists. It allowed us to stay in the comfort of our own home. It is a necessary program that no one wants to have to access for their child. Where would we all be without this program?
Although I hated it, I was thankful to be able to have the support and supplies to help Madox through the hardest time of his short life. It is never something that crosses your mind until it is mentioned by a doctor, even if you know it was inevitable. Placing Madox on palliative care gave us personal time together at the end. It was just us 4 in our home, without any interruptions, but knowing the team was just a phone call away. We were able to be with Madox at his last breath, in a familiar setting, on our own terms, laying with him until we were ready to let go.
So when I think of palliative care, I immediately think sadness as I know someone is dying. A family is shattered and feeling hopeless. But I also think peace, comfort and quality of life, because of the care to help the patient pass as comfortably as possible. So yes, I love and hate everything to do with palliative care.
The other day, Marco and I were shopping for flowers at a local nursery. I was wearing my Madox’s Warriors hooded zip up sweater, where it solely says Madox’s Warriors, cure DIPG on the back. A gentleman near us noticed it, “excuse me? I see your sweater. Madox’s Warriors! We know about Madox and his fight.” After speaking with him for a short while he asked ” were you Madox’s parents?” My heart ached at the were word. As humans, we use past tense when someone has died. I try to never us past tense when speaking about Madox. I know he didn’t mean anything hurtful by it, but I responded as I always do “yes, we are Madox’s parents.”
He and his wife gave us their condolences and shared with us how they came to follow our story. What I appreciated most was that they both gave us their sympathy of Madox’s passing. May people either pretend nothing happened, or think it has been an X number of years so not to say anything about Madox. Both hurts our hearts, as it tells us Madox didn’t matter. It really lifted my spirits to hear them talk to us about Madox and the significant impact on us and our loss. They didn’t understand from experience, but they tried to which that alone touched us deeply. Hearing his name. Speaking of his life. Acknowledging his fight and our days without him. It means so much to us, even if it makes us sad for a short time. It tells us we are not fighting alone and not doing what we do in vain. People who know Madox through our charity and our events have helped us realize we are reaching out and making a difference with our awareness.
So to Rick and Grace: Thank you for taking the time out of your shopping to approach us. We truly appreciate that you spoke to us about Madox and his fight. You really made our day and added a little skip in my step for the rest of that day. So thank you.