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Jason’s 29th Birthday

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An MRI was booked. Last week we had celebrated Jason’s 29th birthday. Jason loved birthdays, not just his own, he loved everyone’s birthday in his family. He loved the anticipation of presents, who was coming?  what food were we having? and the best part, ‘the cake’. Jason’s youngest sister Kelsey is an accomplished baker and Jason loved her baked cheesecake decorated with fruit in a glaze; such an incredible taste and a work of art. Jason’s face would light right up when Kelsey placed the cake dotted with glowing candles down in front of him. It was a special time. Thankfully on this July 12th it was a good day for Jason and he was full of joy!!!! So was everybody else!!

Jason’s daily seizures, headaches and  dizziness had worsened. Jason now needed lots of help. It was very difficult. Seeing this decline caused such a sense of uneasiness that was with me everywhere and it wouldn’t go away. I was so afraid for Jason.  Jason was getting words mixed up or else couldn’t remember what things were called-not all the time but it was happening, whereas 2 months ago this was not. Jason was displaying episodes of paranoia and obsessive behaviour which was new. Jason’s questions about anything and everything were constant to me. If there was a blessing in all of this, if you could call it that, it was the fact that Jason didn’t appear to be bothered or worried about any of these issues. Of course the key was not to react and gently help him out, like ‘no big deal’, as we would recall the words for him. Jason would kind of giggle at times with us in this situation which was a welcomed lightness at this time of anguish. Jason just carried on not concerned over what was happening…this wouldn’t have been the case before. It was exactly as Jason’s Doctor had told me four or five years ago “This will be hell on you Fiona watching this, but as time goes by Jason’s realization of what is happening now, compared to before, will become less.” He was right; this is exactly what was happening.

When it was a good day for Jason, when headaches were kept at bay with Tylenol 3s and Advil and he wasn’t too dizzy, Jason would seize the day and want to make the most out of it. This meant getting off the farm and going out into civilization where there were lots of  people, cars, and stores. Places of potential danger. Stress of keeping him safe in a seizure. Jason would love to go and spend time in his favourite stores. The clerks knew us well and Jason loved to have a little chat with them. They were always so pleased to see him. This was a good feeling for Jason and for me too to see Jason in this way. Jason was so courteous to strangers, insisting on holding doors open for people no matter how he felt. When we would go out on these little trips there was nearly always a sense of humour present, some joking and laughter in the truck while ‘Mom’s Truck Tunes’ cd was playing. Jason had compiled 4 cds of our favourite rock tunes, ‘Mom’s Truck Tunes Volume 1 through to 4’. Once back home he would usually like to watch the Discovery Channel while playing on his laptop. He would order up his favourite sandwiches….a pb and j (peanut butter and jam) or a pb and b (peanut butter and banana) usually accompanied with a glass of milk and 2 Tylenol 3s.

Jason would normally then have a nap lying on the couch and that is when I would dash back out to the barns to do as much work as possible before he woke up. If Jason had not yet had a seizure that day I was very nervous about leaving him unattended. In a heightened state I would muck a stall, then run back to the house,  peek in the window to make sure he was still sleeping and if so, run back to the barn andmuck another stall and so on….

Seamus, our golden retreiver, thought this was great fun!

 

 

Striving for employment.

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Resume and College diploma now in hand, Jason was determined to find a job. With a list of printing businesses and Jason’s portfolio carefully placed on the back seat, we climbed into the heavy duty 4×4 truck and set off for the city. Internally I was very nervous about this as seizures were increasing in number and intensity, changes were happening, and I was really worried. Keeping this locked within, I looked over at Jason with a smiling excited proud face to match Jason’s face as he looked back at me with a beaming smile. Such a wave of emotion. There he sat so smartly dressed clutching his file wanting more than anything to have a job like a regular guy.

Jason thrived when earning a paycheck. Beginning in his early teens Jason overcame challenges to hold a job in a sports store, a restaurant and then an animation studio. Some of Jason’s summer jobs had been labour intensive; dirty sweaty work, sweeping parking lots and hauling around wheelbarrows brimming with bricks and cement. Jason insisted on doing these jobs despite having just completed five weeks of cranial radiation. How he managed to push that heavy wheelbarrow around in 30C degree heat with depleted energy, poor balance, and generally feeling ill, was a witnessing of unsurpassable determination. As a Mum, to stand by and watch this child battle through his day wrenched every part of me but the stamina and perseverance that Jason had was a force I knew to leave alone, it was his life force. I knew that no matter what was happening, my role was to provide the strength, optimism and encouragement that Jason looked into me for and so at 5am with a big smile I would wave bye to him and wait for my phone to ring. Jason’s power of his mind and determined inner strength was extraordinary …the way he was able to overcome the effects of his illness until he could no longer was the force behind me.

Approaching the city, time was running out for me, I couldn’t put off the inevitable any longer. With my queasy stomach in a knot I had to bring up the dreaded word ‘seizures’.  I’m sure Jason was waiting for this conversation since we had covered everything else on the drive in and maybe he was hoping it would go away. I guess by not mentioning it and ignoring it just for a little while, we could pretend it wasn’t there. But the blatant reality was,the unwelcome presence of these looming seizures was very much there, and they came with Jason. I delicately told Jason that when speaking with the manager it was best to be up front about his epilepsy at the beginning as it would be unfair to the business upon hiring him to not be aware of this until a seizure happened. Understandably he was extremely frustrated. He really hated the fact that these seizures were in his way again. Having to do this really tore into me but Jason did agree and understood the liability. Jason asked if I would tell them about the seizures and so upon meeting the various managers Jason would give me the floor to do my part. We knew that Jason’s epilepsy had a high probability of being a deterrent, as this had happened before.  At the College’s Open House Jason’s work had caught the eye of a successful large printing company. They had approached Jason which was so exciting and they were very interested up until they became aware of Jason’s epilepsy.

Climbing in and out of the truck about 6 or 7 times we worked our way through the list. The Managers at each and every place were impressed with Jason’s portfolio which was wonderful for him to hear. I was thankful how extremely gracious they were to Jason telling him that if any positions became available they would let him know. Upon the closing of conversation they would meet my eyes and silently agree that this determined young man that stood before them was a beacon of profound human spirit. They appeared to be in awe; here they were just going about their day, just a regular day and then Jason appeared wanting to work despite obvious challenges from illness. In this silent exchange I would get the feeling that they were glad that we walked through their doors that day, to have met this inspirational force. As the doors closed behind us, the twinges of sadness settled deep in my heart as I knew what mountains Jason had to climb to be able to walk into those businesses on that day.

Jason was becoming disillusioned; checking every day online for jobs and making calls and nothing…

I took Jason to the Disability Support Work Program office and of no surprise Jason qualified for work placement assistance.  This was a big step for Jason since he had always refused any special help always just wanting to be like a ‘regular’ person. Thankfully Jason warmed up to these people once he realised that this was his chance, they were on his side. They would approach businesses on Jason’s behalf and find an employer that would be comfortable with Jason’s epilepsy. It was a wonderful organization and Jason became at ease with them. They had also accepted my offer of shadowing Jason at a job or hiring a medical person to be with him if this would improve Jason’s opportunities.

Jason was discouraged. The only jobs offered to him were menial jobs… such as stocking shelves or stuffing envelopes. Hearing that and knowing Jason had heard that, caused everything inside me to drop and sink;I was sure my heart cracked. Jason dipped his head shaking it in disbelief. How brutal. I could not protect Jason and buffer this harsh reality. The truth was now staring Jason right in the face.

Little did we know while sitting in that office, Jason was soon to meet his biggest challenge. NF2 had succeeded in rearing its ugly head again. The focus on the job therefore promptly faded into the background.

Jason’s Ottawa Medical Teams

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We were very fortunate that Jason always had the best of the best…’The A-Teams’. From the Children’s Hospital Neuro-Oncology and Neurosurgery team…. to the Radiation Oncology team at the Ottawa Regional Cancer Clinic….. to the Radiation Therapy team and the Neurosurgery Team at the Ottawa Civic Hospital…. each one of these places becoming like a second home to us. Everyone was in Jason’s corner and made a difficult journey as best as it could possibly be. The combination of the team’s expertise and compassionate approach with Jason was admirable.  Jason felt very secure and at ease with his Doctors, often exposing his infectious sense of humour to them. They all would quickly realize that Jason didn’t come by himself, he came with his Mum! The Doctors accepted and recognized my role and I would become part of the team. I am forever grateful for that.

Jason’s case was very complex. At age 21, Jason was referred to Dr.B’s office..the Chief of Neurosurgery at the time. From the very first meeting, I knew that this brilliant neurosurgeon was Jason’s ticket. Jason also felt the confidence of Dr.B. right away but most importantly Jason ’ liked the guy’. I know that Jason would not have fared as well as he did had he not found Dr.B. and his assistant Sarah.  Jason’s trust and fondness for them both was a huge factor. They became part of our lives over the nine years . I have the utmost respect and regard for these remarkable people.

No award or medal would be worthy enough to acknowledge what Sarah did for us. For me, Sarah was my lifeline. Unbeknownst to her, she was one of the most valued persons in my life.  I told Sarah many times that she was like my angel, always there, offering to help in any way she could. I could not even try to imagine how it would have been had Sarah not been there. There was a mutual respect for one another. Sarah understood that yes, I was first and foremost Jason’s Mum, but I was also Jason’s advocate and I had made it my mission to know as much about NF2 and brain tumours as I could to ensure that Jason had the best treatment possible. Sarah trusted my judgement, would go to bat for me and speak to Dr.B. about my concerns. Sarah was very professional and efficient, always promptly answering my emails about Jason and I never took that for granted as I knew how busy she was. Over the years Sarah remained constant and I was comforted and reassured knowing that Sarah was at the end of my keyboard. It was as if I was alone standing on a stage but right behind the curtain was Sarah and Dr.B. ready to assist when I needed their help. It was such a comfort knowing that they were always there in the background.

Jason had a special relationship with Dr.B. They would joke at times and Dr.B. would call him Jay, which only a small number of people had that privilege. Jason loved it when Dr.B would say “Well Jay, I see you still have the same red-headed mother”. Jason would grin and shake his head playing along.  In a typical appointment, Jason would sit beside me sipping on his diet coke while Dr.B. would be showing me the MRIs on the computer; the tumours proudly showing themselves like illuminated beacons. Jason had all the confidence and faith in the world that these two people in front of him looking at the pictures of his brain would sort it out and let him know if anything was close to his seeing eye.

Jason was always very positive and brave going into the OR. Jason had unconditional trust in Dr.B. Jason knew that this man was on his side and would do everything in his power to help him. Jason would also be at ease and reassured as long as I could stay constantly at his side until the transfer to Dr.B. I was permitted to accompany Jason as far as the other side of the OR doors where Dr.B. and his surgical team would take over. This made all the difference for Jason. I was so thankful for this.

With each additional surgery, risks of morbidity and mortality were raised. There were only so many times you could safely dip in the well and they had to be chosen carefully.The whole approach with Jason was to put out the fires as they happened and to decide at what stage to do this. In Montreal it was said to us “no more surgeries for this kid, he is going to run out of luck.” I greatly appreciated that this was the safe conservative approach and maybe this would be the case for a ‘regular’ patient but this was Jason we were talking about. This would not have been acceptable to him, he had life to live no matter how great the challenge. I am sure there was luck involved at times but Jason had the courage of a lion and it was contagious to all around him.

Jason went on to have four subsequent brain tumours removed by Dr.B.

Dr.B. told me that Jason’s positive attitude going into the surgery was a key part of the outcome; it wasn’t just the skills of the neurosurgeon and team. It was evident to me that Jason and Dr.B had a partnership in the OR, each one relying on the other one. This extraordinary trust Jason placed in Dr.B’s gifted hands enabled Jason to stay in the stream of life and to do the miraculous feat of striding across his graduation stage.

 

Behind the hospital doors.

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It was clinic day; a hive of activity, high energy, white coats bustling in and out of the examining rooms, children of all ages up to 18, parents (mostly mothers) and lots of support staff all with a genuine demeanor. This was a haven, all of us united by a common thread.

Jason would be examined, weighed, measured, blood work done, and a count taken of his café-au-lait spots (a possible indicator of Neurofibromatosis). We would then wait for Jason’s name to be called by his Oncologist and Neurologist. We would be at the clinic for most of the day. Jason was playing a checker game with his new clinic friend. His friend was receiving chemotherapy while they played the game. He had an assortment of lines connecting him to the various drips. The imposing IV poles were lined up beside them almost like they were peering down on the game. Jason and his friend were playing as if they could be anywhere, just like two regular healthy boys on the other side of the doors would play. Jason appeared to not notice any of this; the tubes, the wires, the beeping monitors, the main line giving his new friend a chance at life. What was wonderful was that Jason just saw a boy, his new friend, someone who also liked to play checkers.

As I nervously waited for Jason’s name to be called I made eye contact with some of the other Mothers. I was searching in them for something familiar, a sign that they were feeling like I did. I then realised that they too, were probably just like me. On the outside they appeared to be poised and brave ready to deal with what will come next, but inside there is such a churning of fear for their children. I am amazed how we can keep going with a certain amount of normality and control, when our whole world has such a threat to it. My thoughts were halted by the nourishing sound of children’s voices and laughter. This is where we get it from; such brave little souls, such troopers. The resilience of these children and their joy of living despite the horrible procedures they had to endure, was incredibly humbling.  When a child having a spinal tap behind a closed door could be heard crying, it was heartbreaking for the Mothers. The children just kept playing, not displaying any reaction to this. It appeared as if they had accepted that this was their world. The head of Oncology once said to me, “These children are born with halos over their heads.” She was right. These children are special children. I was changed on some deep level that day.

Over the many years on Neurosurgery hospital floors, I was privileged to share intimate conversations which would greatly affect me. It was as if we were both there at the same time to come together and have this profound sharing, and then forever disappear. We were strangers with exposed souls, connecting for a short time to help one another. These conversations have stayed with me.

A man whose life was ‘normal’… a career, married, young children, had just been told that he had 3 months to live. Sitting on a chair at the bottom of his bed, I compassionately listened to him. He was so raw and emotional. He was telling me how much was left on his mortgage, so worried about how his wife would manage, but as he was saying it, he realized in that very moment, that it didn’t matter because it would soon be paid off because he would be dead. The stricken look upon his face as he realized this halted my breath. He told me how ironic it was that just last month he was panicking about trying to make the mortgage payment, and now, the whole thing was going to be paid off. He was crying and trembling. He told me about how worried he was for his oldest child, a boy, and how scared he was about his children getting the same illness. He didn’t want to go to another hospital like they were planning, he wanted to go home and die there, to be with his wife and children. I was moved beyond words. I had never been with such raw emotion as it was actually playing out. We were strangers but for some reason this man trusted me with his almost primal emotion and anguish.  When I returned to the hospital the next morning, he was gone. I truly hope that he got his wish to go home.

I felt extremely privileged and changed by meeting this man.

A peek in the window of my mind.

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Feel like I’m losing my way. Pressure and fear is unrelenting. All senses heightened. Anxious, helpless, mind racing, heart pounding. Just want to sit in the middle of a field and wave a white flag.

Floundering, fearful of what may happen tomorrow. Will it bring joy or sorrow? Lingering scent of sadness is always with me. It takes exceptional friends to stay close.

5am- in the barn. Temp. -28C with a severe NW wind-chill. Horses have to be fed, blanketed etc.  Jason is inside sleeping. I’m worried out of my mind …is he ok?…has he woken up?….has he had a seizure?….has he fallen?. I feel sick. It’s insane but there is no way out.

Grave danger and overpowering worry of the upcoming surgery is suffocating me.Knowing what could happen to Jason evokes a horrible picture.Total panic. My body and mind feels ripped open and rearranged. I’m on the River of Fear…some days the boat is afloat, other times it is capsizing and this is one of those days.

I hear a muffled thud from upstairs. Seizure! Adrenaline skyrockets. Warp speed up the stairs I burst into his room relieved to find him at his computer, headset on, whistling and humming with his shoes thumping to the beat.This is the thud I heard. As Jason removes his headset I hear Eric Clapton blasting out ‘COCAINE’!!  “Oh hi Mum” a big smile across his face. This smile flows into my heart.  I respond “ Oh hi love, just thought I would see what’s going on” acting nonchalant while reining in my adrenaline. We had a little chat and  I let him get back to his music.  Jason’s spirit never ceases to amaze me and this inspires me to stay brave. There he is up there playing his computer games listening to music and smiling and he has the biggest hurdle of his life coming up. Everything comes back into perspective.

My recurring dream happened again last night. Jason is in the back of the car, we are driving past Qualicum Beach. Jason is frantic not knowing where we are, he can’t see, he can’t hear. I quickly put the windows down he smells the sea air and knows he is by the ocean. This would affect me for days. There are NF2 cases with complete loss of their hearing and sight and that is my greatest fear. As it stands now when I walk directly beside Jason I have to decide does Jason need to hear me or see me. If I walk on Jason’s right side he can’t see me. If I walk on Jason’s left side he can’t hear me.

Summary of my life altering events

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I am compelled to write Jason’s story. Jason’s constant strength and courage, wonderful dry sense of humour, positive attitude, and a zest for life despite the forces of NF2, is so inspiring and continues to inspire. My story as Jason’s Mum for other Mothers (parents)  struggling with how to get help for your child who is ill with brain tumours and uncontrolled seizures. Receiving a diagnosis of a rare condition called Neurofibromatosis 2. Obtaining an unofficial degree in neuroscience. The difficulty in finding the right medical Drs for your child and the shower of white light that comes about when it happens. Family life. Two younger children to nurture and protect. Staying brave for all your children. Marital strain. Trying to keep the home happy and light. Working. Operating a horse boarding stable . Exhausted. Trauma of walking down a train track in the bitter cold amongst grey desolate woods firstly hearing the hissing of the smoldering wreckage..into my sight is the shocking stack of burning mangled train cars that Conor, my brother, my only sibling horrifically died in. My Mum severely traumatized. Becoming your ill child’s advocate, friend, confidante, caregiver and protector but most importantly a mother. Marriage crumbling. Being at Jason’s side through nine brain surgeries, four full courses of radiation therapy…25 treatments per course. Jason defining stoic. As I write this I can hear the double doors slam shut and on the monitor watching the red line intersect his brain, Jason attached to the machine by a metal frame clamped to his mouth. Bravely enduring the suffocating feeling of the facial mask used to secure the head for stereotactic radiation. His will and determination to get back to college to complete the one year course, that due to brain tumours rearing their ugly heads, took 7 years. To never give up no matter what. The constant pressure on me to keep an upbeat positive exterior no matter what, while inside I am bubbling up with worry, sadness and so much fear. It was my mission to carry the stress and worry for my son and allow him to live as normal a life as possible all the way through, and I am relieved that as much as I know I was able to achieve this. No idea what lay ahead. Two and a half years ago Jason died. At that very moment ‘I’ was no longer. Numbly existing on my bedroom floor curled up tight under the extreme grips of grief. How I got to here from there I am not sure. Worried for my beloved daughters in their extreme sorrow losing their brother. Trying to stay strong for my precious girls. Suffocating. I didn’t know any other life than to care for a child and in the past 10 years of Jason’s life caring for him from morning until night. I knew no other. Amputated..lost.  Closest to insane???? Sent to the edge. Writing.. my fingers wrapped around a pen hearing the scratching mark watching the pen move across the journal page back and forth leaving a mass of words behind…The story of how yoga and meditation threw me a lifeline when I was drowning. With the support of my daughters and a few close friends I joined a housesitting company in order to get far away and exchanged pet/house sitting for a place to stay and arrived in Ireland last Sep. Many beloved 4-legged friends made. I was led to places of such beauty and serenity that touched my soul, from the Wicklow Hills to the forests and lakes of Roscommon, to the Cliffs of Connemara, the beaches of Mayo…  Mindfulness and meditation retreats. Reiki Foundation of Ireland certificate. Teachings of Venerable Panchen Ötrul Rinpoche in Ireland.Teachings of Thich Nhat Hahn at Plum Village, SW France. Such a profound impact on me. Made new friends for life. The places I found myself arriving to were so spiritual and healing… Bude, Woking, Monsegur…felt like a higher power was plotting my course and I was just the passenger. Most days I would write. I could not have made it this far without the therapeutic nurturing healing of restorative yoga. My wish in this new way of living is to be able to pass this on to help anyone in trauma. So much so I received my Restorative Yoga Teaching certificate last year.  I would like to share this nourishing practice. To pass on the coping tools in my toolbox. To offer some healing and compassion in trauma and grief. I am not sure how this will all come about but I know it will present itself when the time is right. Right now I feel and hear the universe telling me write, share, help, inspire, so the journey begins.