My Hero – My Son by Melissa Da Silva
Joshua spends every moment of his life inspiring others with his determination and desire to achieve. His beautiful little smile can simply melt your heart.
August 4, 2010: Joshua’s birthday was one of the happiest and most heartbreaking days of my life. I remember it like it was just yesterday. I can picture every detail and feel those exact emotions. I was 36 weeks pregnant and after an unremarkable day, I had an overwhelming feeling that I needed to go to the hospital. Maybe it was faith; some call it mother’s intuition.
A relatively normal assessment quickly changed with the onset of a single contraction. In this very moment, my baby became extremely distressed and despite countless interventions he was not responding. Fearful and afraid, the nurses immediately called a Code Pink – an obstetrical emergency. The life of a mother and child hung in the balance.
My son was born by emergency cesarean section and in the early moments of his new life he was fighting against death. My beautiful six-pound baby boy was fighting a medical battle of astronomical proportions. Joshua had a life threatening condition called disseminated intravascular coagulopathy (DIC) that caused his blood to become extremely thin and made him very sick. It is believed that at the time of that single contraction, Joshua began bleeding in his brain, suffering a hemorrhagic stroke.
This was the darkest time in my life.
I remember sitting next to my son’s bassinet in the middle of a busy, loud NICU filled with nurses, doctors, families and friends; I felt so alone. I was scared and lost. I was bargaining with God and I was angry and heartbroken.
After 19 long days in the intensive care, my baby boy Joshua made it home. He fought hard, and with the love of his family and the knowledge and skills of the Stollery ICU staff, he survived.
We finally went home, and we were together like a family should be. My husband and I were committed to providing our children with unconditional love and support, despite our fears of the many unknowns for Joshua. We didn’t know if our precious baby was blind or deaf; we didn’t know if he would ever walk; we didn’t know if he would ever talk. Would we ever hear “mommy” and “daddy” spoken from his lips? Only time would tell.
Just when we felt like we were getting into a routine, our sweet boy became seriously ill with a respiratory virus and he struggled to breathe. He was so weak he barely had the strength to hold his head up. Joshua spent over two weeks in the Stollery once again. It was during this hospitalization and a random elevator ride that I first encountered a member of the pediatric neurosurgery team, Dr. Pugh. Tired and crying I bombarded him with questions about stroke complications, stroke recovery and surgery. Having never met my son he still spent time with me and shared his knowledge. Genuine and kind, his exact words to me before we went our separate ways were, “If you need us, we will be here.”
We didn’t know if our precious baby was blind or deaf; we didn’t know if he would ever walk; we didn’t know if he would ever talk. Would we ever hear “mommy” and “daddy” spoken from his lips? Only time would tell.
Seven months later, Joshua would in fact require the help of the neurosurgical team. He required brain surgery for a VP shunt at 14 months old. His head was rapidly growing and the only remedy was surgery.
Dr. Pugh and Wendy Beaudoin took us by our hands and with compassion and knowledge led us down this very difficult path. Answering our every question, never rushing an appointment, and having genuine care for our family made it easier to hand him over to them in the operating room on September 20, 2011.
Now at three years old Joshua continues to amaze us with his drive and motivation. He has undergone countless procedures, surgeries, scans and appointments that are reflected in the hundreds of Hope Stones he has collected already. The hope stones are a symbol of a difficult medical journey, but they are even more a symbol of what we have overcome as a family.
Joshua has accomplished so much in his short life and we are so tremendously proud of him, and we are in love with him and his brother.
Sisters by Melody Willier
My husband and I are blessed with two amazing girls. Like all new parents, we were thrilled when we found out we were expecting our first daughter. Addelyn joined our family in 2009, and she was beautiful.
At birth, she inhaled meconium and was taken away from me with breathing problems. She was transferred to a different hospital than the one in which we delivered. I remember being heart-broken and feeling helpless; I only got to hold her for a few seconds before she was transferred. Her dad was right by her side the entire time, already showing us how great of a father he would be. We spent six days in the hospital as she learned to breathe and eat on her own. We took our baby girl home and began our journey as a family, expecting that our trauma was over.
It wasn’t until she became ill at seven months with a respiratory infection that the doctors began to raise concern about her development and low muscle tone. It was at this moment that we realized our lives will be changed forever. Blood work, tests, physiotherapy, and treatment programs were now going to be a daily part of our lives. Addelyn is now an active and bright four-year-old. She has started to walk this year and continues to show us that she is not stopping but moving forward. We are so proud, and we admire her strength.
Optimistic and hopeful, we decided to have another child. We were reassured from the doctors that it was less than a one-per-cent chance our next child would have any medical issues. In July of 2011, our baby girl was born five weeks early at three pounds, 11 ounces. We spent 33 days in the NICU where they discovered she had two holes in her heart. After 10 months, the medical team decided that one of the holes in her heart needed to be repaired because she was not growing or developing. In May of 2012, Claire had open-heart surgery. In the summer of 2013 she had an MRI, which showed that she has a tethered spine and severe scoliosis. This is the point that we officially became part of the neurosurgery family.
Claire is being watched and monitored and will need multiple surgeries – including spine surgery – in her future. We know we have struggles and a lot of work ahead of us but she is our angel and we will do whatever it takes to make sure she is moving forward. She shows us every day that she is determined, hardworking and stubborn.
Both girls had genetic tests done and they both have a rare chromosome imbalance. We do not have a true diagnosis and are unsure of what the future holds for them. We are certain, however, that we love them unconditionally. With the help of therapies and specialists we are certain we will be sending our girls in the right direction to succeed.
As a parent of undiagnosed children, it is hard to move forward not having any answers and it is challenging to know where you belong or what direction to go. Trust that your child will show you and lead you in the direction you need to go. You will be surprised at the obstacles you will face and you will always find the strength to keep going. Always trust your gut as it will never lead you astray; there may be times when you have to disagree with a situation, but know that it is OK to stand up for what you believe in, and get educated on the decision you must face.
People say to me all the time, “I could never do what you do.” I always look at them and say, “Yes you could, it’s that simple. Yes you could, yes you would and yes you can!” My children are my heroes and inspiration.
Olivia’s Journey by Wendy Beaudoin
My name is Wendy, and I am the nurse practitioner for pediatric neurosurgery at the Stollery Children’s Hospital and a co-founder of the Neurosurgery Kids Fund. More importantly I am the mother of Olivia, my 10-year-old daughter who has had 29 surgeries, most of them on her brain or spine. On January 7th she will undergo her 30th surgery. In talking to my good friend Melissa, a mother of a neurosurgical patient, we thought this section might be helpful in many ways. For some of you, it may provide comfort to know others are struggling, thinking or feeling things that you may have thought but were afraid to say out loud. For others, it may be your first insight into the daily struggles of having a chronically ill child. Whereever you are in your journey or whatever your relationship is with the Neurosurgery Kids Fund, I hope you find this blog informative as we travel together through the next few weeks.
See Olivia’s Journey
, where we have included excerpts from Wendy’s blog as she travels through Olivia’s medical journey. This blog is especially powerful because it is written with the utmost honesty about family, friendship, mental health, fear, gratitude, unconditional love & hope. Also find the blog at facebook.com/neurosurgerykids
Courageous Cohen by Tammy Samoil
I am the proud mother of three boys. Cohen is our youngest son. On August 20, 2012 he was admitted to the Stollery Children’s Hospital emergency with a high fever, vomiting, severe lethargy and two different types of rashes. We thought he had the symptoms of meningitis, but it was a severe blood infection.
By the late evening of August 22, Cohen was admitted to the Pediatric Intensive Care unit. The doctors told us that Cohen had suffered eight to 10 strokes, the infection was attacking his heart and an infected growth was damaging the valve in his heart. On August 23, 2012 our little Cohen had open heart bypass surgery. It was a tremendous success. The surgical team was able to take off the growth, but they needed to replace one of Cohen’s heart valves as it was severely damaged by the bacteria. He will require at least two more heart surgeries as he continues to grow to replace the valve.
As Cohen started his recovery in the cardiac section of the PICU, he seemed to be improving. He was still on many IV antibiotics and drugs, but he had started speaking again and had about eight to 10 words before he was moved to the regular ward.
I’ll never forget the night of September 7, 2012. The Rapid Response Team took Cohen back to the intensive care. An aneurysm, unruptured, was making the pressure in Cohen’s brain mount and placing him in grave danger. Cohen had a tube inserted into his brain to drain this fluid and relieve the pressure. He also suffered seizures. Soon after, doctors sent Cohen in for an angiogram and inserted glue into his head to hold the aneurysm in place to prevent further brain damage. The aneurysm burst under the pressure of the glue, but the glue held the clot in place.
Just as we seemed to have brought this under control, Cohen then developed vasculitis and was put on high doses of steroids. This seemed to have cleared up so Cohen was taken again for another angiogram to get a better look at his vessels and arteries. We never thought he’d have an allergic reaction to the angiogram dye, especially since he’d already been exposed to this only a week before. Cohen had an anaphylactic reaction. His run of very bad luck never seemed to end and he couldn’t catch a break.
Throughout this second stay in PICU, we still weren’t sure how Cohen’s vision was affected and what exactly he could see. We knew his right side was severely affected by his first set of strokes and now the left side of his body was severely impaired from the aneurysm. If that wasn’t enough, we were extremely worried as Cohen hadn’t said a word or acknowledged any sort of understanding for weeks after the aneurysm. During this time Cohen still required the tube in his head to help drain the fluid, our options were fairly limited and it looked like Cohen would need a shunt. So, after many conversations with our neurosurgeons, we tried a third ventriculostomy surgery. Although initially his pressures looked like they were dropping, Cohen ultimately still had to have another surgery for the VP shunt placement.
Cohen is very motivated, stubborn and determined: all amazing qualities to have for some who recently became very ill, recovered and is now on a new journey of rehabilitation.
On November 4, 2012, Cohen was discharged from the Stollery after 77 days, 55 of which were in PICU. Cohen is truly our miracle child. Our ultimate goal for him is to be able to walk again and I know some day that will happen, just not for a while. But for now, he is a happy child learning to move again on his own terms and in his own ways. Cohen is very motivated, stubborn and determined: all amazing qualities to have for someone who recently became very ill, recovered and is now on a new journey of rehabilitation.
Jacob by Soula Milonas
Jacob has fought for survival from the moment he entered this world. Born extremely premature and weighing only one and a half pounds, he was very vulnerable and frail. At only 12 days old, tiny beautiful Jacob contracted meningitis making him fight even harder to stay alive.
Just a few days shy of being one month old, Jacob was taken to the operating room and Dr. Aronyk inserted a shunt to help relieve the pressure from the CSF fluid filling in his brain. Little did we know this was only the beginning of our long medical roller coaster ride. After six months in hospital Jacob was ready to finally go home. He lasted four days at home and ended up with an infection that spiraled into eight more months in the hospital and many more surgeries.
Jacob’s battle continues to this day. He has cerebral palsy, svc (blood clot syndrome), seizures, stomach cysts, irregular heart rate, and blood pressure issues and is on multiple medications. Jacob has had 92 operations and over 300 procedures/scans in his short 13 years. He has been on life support and we have come close to losing him many times.
Although the journey has been hard, sad, and scary, it has also been amazing, beautiful and life-changing. Jacob’s strength and fight for life is unreal. I thank the Stollery Children’s Hospital, pediatric intensive care, the neurosurgical team (Wendy, Dr. Mehta, Dr. Pugh and Dr. Aronyk), unit 4D staff and everyone else who holds the hospital together. My Jacob is still here and I am so grateful!
God only knows how much longer I will have with this amazing little hero, and I take in each second of everyday and hold on to every smile, laugh and memory as tight as I can. Even though it’s been so hard, I feel so lucky to be his mom and be part of his journey along with all the amazing family and friends that are right here every step of the way.
Every day we wake up we have a choice: we can be angry, frustrated and unhappy or we can live like Jacob and be happy and grateful, taking on whatever life throws our way. We make every smile count and share love, hope and strength with all those around us! Jacob is a true superhero, he is my world and he has taught me more than I could ever teach him. I’m the luckiest mom in the world to call him my son!
My Neurosurgical Journey by Ashley Mullins
My medical story began when I was 14 months old. I was born with a cavernous malformation. One day my mom had noticed I was dragging my right leg and couldn’t use my right arm properly. I was having a hard time keeping food down. My mom decided it was best to take me in to see a doctor. So I went and had an MRI. We got the results – I had a brain hemorrhage. I had a 12-hour surgery, with Dr. Aronyk as my surgeon. My chance of surviving was less than 25 per cent.
I made a full recovery but had MRI scans on a regular basis. I grew up healthy, active and happy playing sports and doing hip hop dancing. When I was 12 years old, I was doing my first photo shoot ever as I was interested in modelling. I remember I was having a hard time holding myself up, getting very clumsy with my whole right side. I also had a fall at school one day and knew something just wasn’t right. So my mom took me in to see the doctor and to get an MRI. I had hemorrhaged again. It was a 12-hour surgery. I remember all my family and friends were so worried and crying as I was going in to the OR. I was scared but I knew in my heart that it would be OK in the end.
The doctors had told my family that they were expecting me to be in a coma for up to four months. I actually woke up on the operating table as they were bandaging my head up. Everyone in the OR was clapping and cheering and I knew exactly where I was!
After my surgery I was in the University hospital for about three weeks before I got transferred to the Glenrose Rehabilitation Hospital. I had to relearn how to walk and talk. I was in occupational therapy, physiotherapy and speech therapy. I had to re-train my whole right side of my body and my mouth to work again. The simplest things would be so hard for me, like picking up a pencil or just sliding a cloth across the table. There were days when I just wanted to give up completely. But I got through each day knowing my friends and family were always there for me. My rehabilitation continued for about eight months and I was almost ready to go back to school full-time until we realized I wasn’t feeling myself yet again. I went in for another MRI and the results had shown another hemorrhage. This time I was sent to Calgary because they had an MRI machine in the operating room.
My friends, family and even Dr. Aronyk and Wendy Beaudoin from Edmonton came to be in the OR. That made me feel so much more at ease with the 14-hour surgery I was about to have. They told me and my family that because the surgery had to be so aggressive to cure me that the chances of not walking again were very high. At that moment my heart just sank. All the memories I had of me running and playing sports just flashed in my head. I then realized that my life would never be the same. What I once knew could be gone forever.
With having more challenges than I ever thought possible each day was a struggle beyond my wildest imagination. My doctors, my family and my friends were by my side every moment. Together, we got through each day. I fought as hard as I could. With strength, hope, courage, love and faith I’ve made it through. To this day I still work on my walking and I love to do volunteer work and fundraising for sick children. I work for the Stollery Children’s Hospital for my doctor and nurse and look forward to my future and helping sick children in any way I can.
I am so blessed to have the life I do. Is my life a struggle? Yes. But that doesn’t stop me from doing the things I love! I can do basically everything, just in a different way.
My Boy by Deanna Schultz
Caleb swims, rides horses, zip lines, camps, sings, skates and plays hockey, goes to concerts, plays video games and the computer and enjoys anything and everything fun. He has a wonderful sense of humour and wit, is confident and aspires to be a puppeteer or actor one day. He is also a teenager who is in Grade 7 and is sassy and a little moody at times. Overall, he is just an average kid who enjoys his life.
Caleb was born at 27 weeks weighing one pound 13 ounces, and he was 12 inches in length. This is the same as two bricks of butter and an unsharpened pencil. Because of the prematurity, Caleb has been diagnosed with moderate spastic quadriplegia (affecting all four limbs) cerebral palsy or severe spastic diplegia (both legs) cerebral palsy.
It is a very trying time when you first receive a diagnosis. Your worries can consume you and it is very overwhelming. What I can tell you is that it gets easier and you can adapt. For me, the first couple years were the hardest. Not only was Caleb’s body premature but his immune system as well. We spent 19 months of the first three years in and out of the hospital with respiratory issues, aspiration and reflux and finally having a G-tube inserted to help him with his feeding and swallowing. This was not including all the regular appointments for cardiac echoes, MRIs, x-rays and numerous other tests. Life was pretty exhausting during that time.
Once we were out of the medical crisis, things calmed down. Caleb learned to sit up at three years of age, walked with a walker at four, outgrew his G-tube at five, and has kept progressing ever since. There have been some other medical interventions such as botox for spasticity and orthopedic surgery but he continues to progress and be stronger every day. This year he was able to stand up on his own without any assistance.
I am proud of my son every day for the things he has accomplished and for what he strives to do. He is in a wheelchair but has never let his disability define him. He has spoken in front of hundreds of people, young and old, in regards to how his disability affects him. His motto in life is “It’s not how you do it. It’s that you are doing it.” He never says he can’t. He says “I can – just differently.” He has changed my life and inspired me to do better, be better and try harder. It is because of him that I am who I am today.
Little D by Lindsay*
We tried for months to find out what was wrong with our son. His weight dropped, he stopped meeting milestones and he continued to regress and deteriorate to the point where he looked like he did not even want to go on anymore. We stressed and searched and finally 10 months later, after numerous tests and procedures, an MRI finally gave us our answer. “Your son has a tumour in his spinal cord. The tumour is very large; it starts at the top of the spine and goes approximately halfway down his back. We will be operating in 10 days and you need to get him to gain as much weight as possible before then. I know this is a lot to take in. Do you have any questions right now?” “OK” is the only word that escapes my mouth. Everyone leaves the room; we both sit there and stare straight ahead, we stare at each other, we stare at our son and then we cry. My ears are ringing and I have one of the worst migraines ever. I feel very alone. My marriage has been unravelling from the previous months of stress; I am 27 and pregnant with our third child, who is due to arrive in less than a month from this exact day. The next 10 minutes are full of crying and a few short sentences. Oddly enough I feel relief. We finally have an answer and they are going to fix our son.
The next 10 days somehow fly by yet still feel like an eternity. We don’t talk about the surgery; we enjoy every minute we have together. Tomorrow morning is the big day. My nerves are starting to rattle and I am feeling more anxious as I listen to the clock on the wall tick away. I don’t sleep at all; I sit in a rocking chair holding our son as tight as I can. I just stare at him and pray. At seven in the morning – all too soon – they come for us. During the surgery minutes in each hour feel like an eternity. We receive word halfway through the surgery that everything is going wonderfully, as well as can be expected. I continue to pray. We are finally able to see our son in PICU nine hours later. We are warned what to expect: tubes, machines, equipment. I am not shocked by any of it, I am just so thankful I can finally see him again. The first few nights are awful. The worst part as a mother is not being able to pick him up and hold him. I feel completely helpless and beat down.
Your son has a tumour in his spinal cord. We will be operating in 10 days and you need to get him to gain as much weight as possible before then. I know this is a lot to take in. Do you have any questions right now?
As the days go on he continues to get better and he is able to move from PICU up to the unit. Three weeks later we are finally home. Life is so busy, appointments are the new normal, rehab is just part of our daily routine, and we spend a lot of time in the car. After nine months of gruelling rehabilitation our son is walking, pushing a walker. It is truly amazing.
A follow-up MRI shows the tumour is growing back and we learn that at the age of 18 months our son is going to have surgery again. It feels way worse than it did the first time. I am scared, but mostly I am angry. I am so angry that my son has to endure this situation not once, but twice. The surgery is another very long surgery, and just as hard on everyone as the previous one. There are more complications during the surgery than the first time, and we have more to deal with after the fact. I am relieved the surgery is behind us and we can move forward to the next step: rehabilitation. Our son will walk again, I am very confident of this. We are told that because of all of the complications during the surgery, he is no longer a candidate for more surgery and if the tumours come back our only option is radiation.
Two months later my heart is ripped out of my chest for a third time. I know without a doubt that the tumours are growing back. It is confirmed in our clinic visit and I am hit by an imaginary train at full speed. This is our last hope, the doctors tell us. If this does not work, we are out of options. He goes through 28 high dose radiation treatments and is so sick he is hospitalized for four weeks. In everything he has been through I have never seen him as sick as he is now. My heart shatters into a million pieces. I feel completely helpless. I feel guilt – how could I, as a mother, let my child endure something so horrible? But I know in my heart this is truly going to be the answer to our prayers. I know it to be true with every fibre of my being.
Our son has been cancer free for two years and two months! It is amazing to know in your heart that cancer is no longer plaguing your child. It’s amazing to see how far he has come and how far our entire family has come.
* Name withheld
Lauchlin by Kaela Hendra
Lauchlin was born at 25 weeks and six days to his parents surprise, weighing in at one pound, 15 ounces. This meant he would stay in the NICU for three and a half months and have lots of tests for all of his little organs. Our initial round of tests discovered early on that he had what the doctors described as a “bleed in his brain,” but the hope was that it would clear up without surgical intervention. The neonatologists watched it closely with on going head ultrasounds and measurements. It wasn’t clearing up; we would need to have close follow-up after release from the NICU. We were so overwhelmed by everything going on in his little body. We were just praying for a healthy baby, whatever that meant at this point. Getting answers was next to impossible and no one could tell us what our future held and what struggles our family would face. It was terrifying. There were a lot of tears and moments of “why us?” But we couldn’t get stuck there.
We were just praying for a healthy baby; whatever that meant at this point. There were a lot of tears and moments of “why us?’ But we couldn’t get stuck there.
When we went to see Wendy and Dr. Pugh after his release, more tests came in the form of CT scans and MRIs, lots of them, until one day Dr. Pugh wasn’t there and we met with Dr. Mehta. His latest MRI wasn’t good; his hydrocephalus was progressing and he needed a VP shunt, and quickly. Dr. Mehta told us the risks and the benefits, and told us this is our reality. Our five-month-old baby, our nine-pound baby, would need surgery in two days. We spent that day preparing, getting ready for our son to have a catheter put into his brain and run down his little body, into his abdomen. It was terrifying. Lauchlin’s lungs were not strong and the last time he had surgery (at the NICU) resulted in him being intubated for days. There were a lot of tears, and more “why us.” Once again, Lauchlin was the strong one and we had to follow suit. We would get through this and we would do it together, no ifs, ands or buts.
On the leap day in 2012, just one day short of his five-month mark, Lauchlin was in the OR with multiple doctors and nurses. He had the best team possible and we were so thankful for that. He had the VP shunt put in place and rocked the surgery! Our miracle babe did it again, no issues!
We stayed at the Stollery for five days. It was hard to flash back to our beginning at the NICU, to be the family with a “sick kid.” This was our reality; we couldn’t show off our baby like most do, there were no trips to family and friends, no big baby showers and we were the “bubble family.” Sometimes I would just sit and cry. My beautiful baby was fighting for his life and it wasn’t fair. Why us? But there it was again – it was our reality. Once again we focused on the positive, fought as hard as Lauchlin fought and got through it. He was ours, he was here, and that was enough.
Lauchlin is doing amazing. He has only needed one shunt revision (surgery to replace a portion of the catheter), which went great. We watch closely for any developmental delays as that would be common with his diagnosis, but we are so lucky. Lauchlin has been developing at a rapid pace and is catching up to his peers. He is such a happy boy and has the best laugh. He is his own safety enforcer and is constantly telling others to be careful. It seems he doesn’t want anyone else getting hurt. What a thoughtful young man.
Lauchlin continues to visit the neurosurgery team once every three months. This visit usually entails an MRI, and a chat with Wendy, Dr. Pugh, or Dr. Mehta. We welcome these visits and the peace of mind that comes with them. We are so thankful to have their support and expertise in our lives.
We are now pregnant with our second child and anxiously awaiting a little brother for Lauchlin. We know he will be the best big brother. His laughs and hugs get us through. We still have the tough days, full of vomit, headaches and nights in the ER, but they are few and far between. We are strong, we are together and that is our reality.
Brain Power by Kelly Smart
My dear daughter was breech. I had to have a C-section to deliver her because of her breech position. When they took her out I was ecstatic and full of love and joy that my baby girl was finally here. I noticed right away that her head looked a bit strange. I asked the nurses in the hospital about it and they assured me that it was fine. At her two-week weigh-in at the health centre I asked another nurse. She said she would refer us to the Head Shape Clinic at the Stollery Children’s Hospital. That is where our journey with Dr. Mehta and Wendy began. At the age of four weeks we met with them. Wendy took one look at my baby and said she had sagittal synostosis and that she would need surgery to correct it.
I sat in the corner and cried my eyes out. I couldn’t fathom the idea of my tiny baby girl having to have to go through a surgery at such a young age. I was a mess. I cried for days. I kept apologizing to my baby for what she was about to go through. I thought it was my fault, that I did something in pregnancy that caused this. Later I found out that this wasn’t the case at all. There’s nothing you do to cause it – it just happens. She was scheduled for surgery on April 16, 2013 at the young age of 11 weeks old. The days leading up to the surgery, I was a mess. I couldn’t eat, couldn’t sleep, and couldn’t stop crying. I knew we were in great, capable hands with Wendy and Dr. Mehta but it was still hard to process. When the nurse came to get my baby, I handed her over with a heavy heart and almost dropped to my knees with anguish, worry and heartache. It was the hardest thing I have ever had to do to hand her over. The next few hours felt like it took forever. Finally we saw Wendy and she said it was all done, and that our baby girl did amazing. Tears of joy came rushing out. The worst part was over. We spent the next two days at the Stollery Children’s Hospital while she recovered. She had some swelling but she was in good spirits.
I couldn’t fathom the idea of my tiny baby girl having to have to go through a surgery at such a young age. I kept apologizing to my baby for what she was about to go through.
We went home and a few weeks later got her helmet – a cute light one with butterflies on it. She wore her helmet for about four months and when it was all over she had a beautifully shaped head. Looking back now I am so glad it is over, but I know it was worth it. Wendy and Dr. Mehta did an amazing job and have been fantastic through the whole process. We could never thank them enough for their expertise and knowledge and what they did for our daughter. To everyone involved: thank you, thank you, thank you from the bottom of our hearts!
Graham by Andrew Powell
Graham was diagnosed with hydrocephalus (water on the brain) although his first surgery revealed an arachnoid cyst (a cyst in the lining of the brain).
The first indication that something wasn’t right with my son, Graham, wasthe early onset of puberty. If it sounds like Barry White is in your living room and it turns out to be your seven-and-a-half-year-old son, you might want to look into it.
That first moment of realization starts a whirlwind of thoughts and emotions, most of which have no logic behind them, no foundation in fact, and all of which have very unhappy endings. So you head to the doctor hoping it will be easily explained.
We’ll stay optimistic, comforting, and encouraging and we’ll all get through it. But it doesn’t end there for anyone.
For Graham, it wasn’t easily explained. Our family doctor was reluctant to even speculate and referred us immediately to a specialist at the Stollery. After that first meeting, the one specialist became three: neurology, endocrinology and pediatrics. After a battery of blood tests, some lasting several hours, and aCT scan an MRI finally revealed the culprit: hydrocephalus. The only solution was surgery.
It’s maybe the most surreal experience you can have as you stand in a neurosurgeon’s office with your child while the doctor uses a pen to gesture where, in your child’s skull, he’s going to drill. I can’t say that my mind has ever managed to wrap itself around that one. I hope it never does. But this is when the “relax, everything will be fine” thoughts started, probably to mask the deeper, darker thoughts that my life, and the life of my child, just changed forever.
Graham underwent his first surgery just a few weeks after the diagnosis. The procedure is called an endoscopic third ventriculostomy (ETV) wherein the surgeon creates a channel between the third and fourth ventricles of the brain because there’s an obstruction or some other blockage in the cerebral aqueduct. The operation revealed that Graham had an arachnoid cyst in his brain. The surgeon created several drainage points in the cyst, and after a night in the hospital my wife and son were home. Graham was put on monthly injections of Lupron to help suppress the puberty, and my family breathed a sigh of relief.
When the symptoms came back nearly a year later, we knew Graham was probably headed back to surgery; we had been warned at the beginning that the ETV might not work and, given that the first surgery didn’t go exactly as planned anyway, we all braced for the worst. So 13 months after his first surgery, Graham was “under the drill” again.
This time, the procedure was far more aggressive, and they also installed an EVD (extra-ventricular drain), a temporary tube from Graham’s head to drain and monitor his brain fluid and to rebalance the pressure in his brain. There were issues related to the EVD, and Graham found himself in for a third surgery, this time to install a cerebral shunt. His second hospital stay ended up lasting five weeks, during which my wife never left his side. During these five weeks, I had to continue working. I felt guilty at first that I couldn’t be there more for my son – in addition to working, I had to look after our daughter. Really, though, I think that was the best thing I could do; I had to be at home to work anyway, so I settled into my job as single parent to our daughter and resupply staff for my wife.
Graham continues to have monthly injections of Lupron, but many of the symptoms are ongoing. At times, the effects of both the surgery and the hydrocephalus on his motor-skills and memory make him frustrated and upset. I think, maybe, this is the most important part of the process for parents: of course parents are going to be there for their kids during surgeries or hospital stays. We’ll stay optimistic, comforting, and encouraging and we’ll all get through it. But it doesn’t end there for anyone. There are always the memories of the day you realised something was wrong, or the thought that someone drilled a hole in your kid’s head, or the early morning you watched your child wheel away. And for the child, they have real, first-hand trauma to deal with, quite often with life-altering consequences. You can never be too compassionate, too understanding, or too patient. Kids can be remarkable pillars of strength, but they need to know that, however they are and however they’ve changed, you wouldn’t change a single thing – you love them and are proud of them exactly as they are.
TIP: Read about hydrocephalus in detail here here
Daddy’s Boy by Trevor Bosma
Oliver was born November 28, 2011, the proudest day of my life. Not only was I a father but I had a son, who would be my best buddy. At four months old, Oliver had the task of taking care of daddy while mommy went back to work. Little did we know that staying home with daddy would turn Oliver into a hockey-crazy child. At seven months old Oliver said “hockey” for the first time. At eight months he was introduced to a hockey stick. At 10 months old Oliver was walking around the house with a little hockey stick, shooting balls at me. He walked around everywhere with his hockey stick.
On February 28, 2013 Oliver was diagnosed as a type 1 diabetic, at only 15 months old. This was a shock to my wife and I, but it explained a lot about how Oliver was acting the past few months. Illness that took me two days to get over took Oliver two months. Oliver’s weight fluctuated greatly. After his type 1 diagnosis, Oliver gained back most of his weight and started to look healthy again. When he turned 18 months old he slowly stopped walking and regressed back to crawling. He stopped playing hockey and riding his bike. We took Oliver to the doctor to check his ears for an infection. The doctor said his ears were full of fluid and this was probably why he was having trouble walking. We had taken Oliver swimming three days in a row and I accidentally dunked him during a trip down the water slide. We were sent home with a prescription for Claritin.
After a month of Oliver taking Claritin he still was struggling to walk. He was now terrified of heights. We also noticed that his eyes were starting to cross. He refused to eat anything and he was constantly banging his head on the floor. My wife pushed the doctor for an MRI. We were praying it was not a brain tumour and I remember always telling my wife to stay positive and not to think about brain tumours. I was terrified of the thought of a brain tumour. My grandfather had survived six major brain surgeries to remove brain tumours and I saw first-hand how it affected him.
The day of the MRI I took my pregnant wife, due in two to three weeks with our second child, and my toddler to the Stollery. Oliver was scheduled for a 30-minute MRI. After nearly 60 minutes we started worrying about his blood sugar and my wife was requesting we go in to test him. No one would give us a straight answer, and they kept saying he would be out shortly. We explained multiple times that Oliver was a type 1 diabetic and if he went low in the MRI he would go into a coma.
Then my wife’s cell phone rang. As I am trying to calm my extremely frustrated pregnant wife her phone is ringing and ringing. Finally she said “It’s Dr. Sukrahni,” Oliver’s pediatrician. As I am sitting in the waiting room watching my wife talk on the phone I start thinking to myself, “Why is his MRI taking so long? What did they find?” Then I see my wife collapse to the floor. I run over and grab her. As my wife is lying in my arms she is crying uncontrollably and trying to tell me what is wrong. I finally hear her say, “It’s a tumour.’’
My world stopped. How is this little person, not even 20 months old, already going through more trauma in his life than most of us will in our entire time on this earth? We sat in that room begging to see Oliver, my wife crying, me in complete shock with tears running down my face and two members of the neurosurgery team talking to us but I heard no words.
They finally let us see Oliver. I thought I had failed as a father because I could not protect him. Oliver was admitted to the ICU and the doctors informed us he was to have emergency brain surgery in the morning. As Oliver played and flirted with the nurses, as he is quite the ladies man, my wife and I spoke with Dr. Mehta and Wendy. They showed us his MRI results and his tumour. It was the size of a large Christmas orange and was located at the back of his head. These questions were a few of many running through my mind. Dr. Metha informed us of all the possible complications and steps to be taken throughout the night and surgery in the morning. He asked a lot of questions: how does he eat, how does he sleep, is he happy, do his eyes cross and is he delayed?
My world stopped. How is this little person, not even 20 months old, already going through more trauma in his life then most of us will in our entire time on this earth?
Everything started to make sense. Oliver was a fussy baby because he had a tumour pushing on his brain and brain stem his whole life. He would only eat mush because he couldn’t breathe when he tried to swallow solids. He took three big breaths and paused for 10-15 seconds as he slept because his airways were blocked and this caused sleep apnea. He wouldn’t walk anymore and was terrified of heights because the pressure on his brain made him dizzy. He would go cross-eyed because of the pressure on his optical nerves. He would cry and get upset when he got excited to see family and friends because it put pressure on his head and it gave him constant terrible headaches.
Dr. Metha sat with us and explained all the possible complications. We were terrified. There was a one-per-cent chance of death and a 10-per-cent chance he never speaks, eats or breathes on his own again. They also informed us to plan for five to six weeks in the hospital as the recovery from brain surgery is a long, hard road. We cried all night, holding Oliver while all three of us curled up on a single-person hospital bed.
At seven in the morning, we wheeled Oliver down to the operating room. Oliver woke up and told my wife and I he loved us and we gave him hugs and kisses. I grabbed Dr. Metha, hugged him and said, “Please save my boy.” One hour felt like a day, three hours felt like a month and finally after four hours (which felt like an eternity) we got good news. They had removed 90 per cent of the tumour; they only had a piece left on the brain stem and it needed to be dealt with very carefully. Wendy told us to expect Oliver to be in surgery for another four hours. After an hour, Wendy arrived back upstairs. They got all of it!
I was so proud of Oliver. Then came the news: they wouldn’t know if he could talk, eat, see or walk until he woke up. My wife and I held Oliver’s hands all night. The next day Oliver started to swell up like a balloon. Still he woke up, and he said, “Mommy, daddy.”
Day three came and Oliver was in constant pain. Yet he still tried to crawl out of bed, drink fluids, talk to us (and his speech improved at lightning speed) and read books with us. By day four, Oliver was trying to pull every tube attached to him off and he was pretty successful. Oliver was now on the road to recovery and at a pace that shocked even the doctors. We were moved out of ICU and into a room with three other children. Oliver would not stay still. He wanted to get up and play, to read, to watch TV and to eat. I was so proud of him.
They wouldn’t know if he could talk, eat, see or walk until he woke up. My wife and I held Oliver’s hands all night. The next day Oliver started to swell up like a balloon. Still he woke up, and he said, “Mommy, daddy.”
Oliver was quickly known around the ICE unit as “Superman.” Oliver’s recovery time was unbelievable. Every day we would go for car rides, play foosball in the playroom and eat at the cafeteria. On day two, in the pediatric unit, Oliver tried to walk on his own. He let go of my hand in the playroom and tried to walk to the toys. I walked behind him with my hands around his sides waiting for him to fall. Proud is an understatement, I was so shocked at what he was doing after only eight days post brain surgery. Each day that passed Oliver got stronger and stronger.
On August 18, 2013 my wife and I took Oliver for a car ride. As I held my wife’s hand she suddenly squeezed it. I looked at her and said, “Are you okay?” She replied, “I was keeping it quiet but they are getting worse. I am having contractions every five minutes.” I told Oliver that his sister was coming today and my wife organized a ride to the Grey Nuns hospital to deliver our daughter. When my wife left Oliver and I she was having contractions every three minutes. Oliver was still at the stage where if my wife or I were not in his presence, he’d lose his mind. So while my wife had our second child, her mother, sister and best friend took my place to help her through it. I was hurt I could not see the birth of my daughter but I knew how strong my wife was and that she was in good hands. My sister-in-law sent me videos of my daughter immediately after her arrival into this world. She also sent me pictures, texts and I had a quick phone call with my wife. Oliver had a new baby sister only days after his brain surgery, and he was so excited. When Oliver went to bed a few family members took my place beside his bed while I raced over to the Grey Nuns to meet my daughter and comfort my wife. My daughter was healthy and beautiful, and my wife was feeling ready to get back on her feet and to Oliver’s side.
On August 25, 2014, only 12 days after major brain surgery, Oliver was allowed to go home. No one could believe it! After being told he would most likely be in the hospital recovering for five to six weeks, we never dreamed he would be going home two days shy of two weeks. When Oliver arrived home with my wife, his new baby sister and me it was like a weight lifted off his shoulders. Oliver was running around telling us everything he saw – the balloons dropped off for him and his baby sister, the chocolates left for him, new toys from friends and family and the new lawn grandpa had installed with the help of some other family members. Seeing Oliver so engaged was an amazing feeling. I guess it was like a weight lifted off of my shoulders as well. I was so proud that Oliver, aka Superman, recovered so fast, and proud that my wife was so strong before, during and after all that happened with Oliver and the birth of our daughter. And I was so thankful for our amazing family and friends.
Oliver is walking, running, jumping, talking and swimming, and everything is taking off at rapid speed. He surprises us daily with his new words, sentences and goofball antics. Oliver is still about six months behind all his friends in his development but in due time he will catch up to his buddies and we will be there to encourage him as he develops new skills. I truly do cherish everyday and live each day as though it is my last with my family. Life without Oliver would destroy me and I am so thankful for everything Dr. Metha, Wendy and all the neurosurgery team did for Oliver and our family.
A Father’s Dream by Danny Da Silva
A long time ago I was once a good man. I had done everything right and was now awaiting the birth of my second child to complete my family. The birth of my youngest son was going to be a memory that I would cherish much the same way as I did my oldest son. The journey of the “second child” is one that we sometimes take for granted especially if all signs point to a normal journey. Unfortunately, in my case my wife’s typical pregnancy would change in the blink of an eye. My life took a turn into a world that until now was foreign to me. Overnight it seemed as though the world that I knew so well came crashing over top of me and for a long time I wondered if I could ever get out of the rubble and find my way again. I was now the father of a child who had medical complications and a disability.
Learning how to raise a child with a disability is a difficult process as you have to learn how to understand the demands and challenges of raising a child with more complicated needs. This process isn’t easy and can have profound effects on the father. No father wants his child to be sick, or harmed in any way. It is not an experience anyone expects to have, but nonetheless I must have it. Like most fathers, I selfishly dreamed up a life for my unborn son. I had mapped out all of the things he was going to do and see even before he was born. I had lots of dreams. When I was told that my son was going to have extra obstacles in life and no one could really tell me what the future would hold for him, those hopes and dreams I had quickly disappeared before my eyes. I quickly realized early on in my journey that I was grieving the loss of the life I thought I was going to have with my son.
I felt so sad, confused, disheartened and angry that at times I felt like I was walking a very thin line between sanity and insanity. I suppressed my emotions, thoughts and tears. It was the only coping mechanism I had. At times the anger inside of me was too much for me to handle and sometimes I lashed out. Right or wrong, I lashed out. The unfortunate outcome of that is that I hurt my loved ones, more specifically my wife and two young children. As a father I was the one responsible to make sure my son was safe and protected and I was angry at the fact that I couldn’t do anything about it. Even though there was nothing that I could have done, for the longest time I had felt like I had failed him. I had felt like I was less of a man because I couldn’t protect my family.
I felt so sad, confused, disheartened and angry that at times I felt like I was walking a very thin line between sanity and insanity. I suppressed my emotions, thoughts, and tears. It was the only coping mechanism I had.
The highs and lows I faced took me to rough and dark places. Being a father of a child with a disability I felt at times overlooked and under-supported. I didn’t know who to talk to. I was already a very guarded and private person and now I was in crisis mode and I didn’t know who I felt safe sharing my feelings with. I definitely couldn’t share with my wife because she was also struggling to find the answers. I felt like there wasn’t any emotional support and I was embarrassed to ask for it. I didn’t know who to turn to to talk about my stresses and the challenges I was facing. None of my friends and family had experience with this topic so I felt I needed to keep things bottled in and hope that no one saw me crack. I had to look strong in front of my wife and two sons; after all I was supposed to be the pillar that held the family together.
The birth of my son has made me and the people around me better people. As time continues to pass, I am continuously growing and learning to deal with the difficult challenges that are put in front of us. My son has opened my eyes. Although he is only four, every day he is teaching me to be a more compassionate, empathetic, loving husband and father. In life I thought the father would teach the son, but in reality it is the son teaching the father.
A long time ago I was once a good man; now I am a better man.
Ashley by Dianne Dale
My daughter Ashley was born on January 3, 1993 and it was the happiest day of my life. She was a healthy baby girl full of energy. At 14 months she started showing signs of weakness to her right leg and right arm. Her left eye was starting to shut and being a new mom I had no idea what was wrong. Within a week she was unable to keep food down. We took her to the emergency department where we were introduced to Dr. Aronyk. From that moment on he never left Ashley’s side. He ordered an MRI and our world was turned upside down. The results showed a bleed in Ashley’s brain. Dr. Aronyk performed an emergency surgery not knowing what he was going to find. He said it could be a tumour or an aneurysm. He also said that her chances of survival were less than 25 per cent. The surgery was 12 hours and every second seemed to last for hours.
Our children are true angels; they are strong, courageous and full of hope and love. We all can learn from them. I believe that all things happen for a reason.
I will never forget the moment when the surgery was complete and Dr. Aronyk said that she made it and that she did great. He told us it was a cavernous malformation on the stem of her brain and that she would need rehabilitation and continuous MRI scans. Ashley grew into a healthy, beautiful young girl who was incredibly active. She played soccer, volleyball and did hip hop dance. All the while, she still continued MRIs on a regular basis.
When Ashley was 12 years old, she was on a modelling photo shoot when she complained of her right leg feeling weak. We also noticed she was dropping things. We did not think it was anything as she had been doing so well for so long. We booked an MRI as it had been time for the next one, and once again our world fell apart.
She was hemorrhaging again. We could not believe this was happening. She was booked in for her second surgery and Dr. Aronyk was optimistic. At this time we were introduced to Wendy, the nurse practitioner of neurosurgery. Wendy and Dr. Aronyk never left her side or ours. Dr. Aronyk told us that we needed to prepare ourselves that the chances of Ashley being in a coma for several months. We would deal with anything we had to, as long as she survived. Once again the surgery was over 12 hours and she made it through. She was awake and looked at Wendy and said, “Hi Wendy!” It was a miracle again!
Ashley had to learn how to walk, talk and write again. Her strength, determination and will to live was remarkable. She never gave up. She was just at the point of going back to school full-time and getting back to her life with her friends when we once again noticed weakness.
Ashley underwent her third brain surgery, this time in Calgary because there was no MRI in our operating room. It was devastating to not be in our hospital, the Stollery. Dr. Aronyk and Wendy travelled to Calgary and were by her and our side once again. Dr. Aronyk said that this surgery would be so aggressive and there would be so much damage that the chances of her walking again would be almost zero.
Ashley’s surgery was 14 hours long and for the third time a miracle happened. Nine days after surgery we were transported to the Stollery in an ambulance and she recovered there for another two weeks. We went to the Glenrose Rehabilitation Hospital and Ashley our true hero and fighter came through again! The doctors were amazed by the miracle of Ashley starting to walk again.
Ashley is now 21 and continues MRIs and rehabilitation on her walking. She is working at the Stollery Children’s Hospital under Dr. Aronyk and Wendy and wants to do whatever she can to give back and help children. She participates in volunteer work and fundraising for the Neurosurgery Kids Fund.
As a mother of a sick child it is so difficult to find the words to describe the pain. All I wanted to do was take her pain away. Children should never be sick. When your child is sick the world outside stops, and nothing matters but your child.
Our children are true angels; they are strong, courageous and full of hope and love. We all can learn from them. I believe that all things happen for a reason.
My Inspiration…My Sadie By Shannon Schmidt
My miracle, my inspiration and my hero entered my life in a flash… all one and a half pounds of her, 16 weeks early! In some ways it feels like just yesterday, as the emotions can come back so strong and clear. My third daughter who was frail, clinging to life and expected to die overnight would capture my heart, causing me, in a split second, to become her advocate.
Having almost lost her many times, over countless procedures and surgeries and a massive brain bleed, and with her consequent shunt placement behind us, we thought there was nothing that could be worse. It was then that we were dealt another blow. I was alone, rocking her in the NICU when I was told that our precious girl was deaf. It was a blow that I can still feel to the core of me.
I was somewhere in the cycle of grief about her early arrival and the serious impact it had on her brain and future development, so when the audiologist told me my baby had not heard me sing to her, talk to her, and pray for her for over 180 days in the hospital, I spun back straight to denial. It took time and patience, the support of my husband and daughters, and I soon came back up for air and began treading water again. Although the medical world gave us a very gloomy prognosis, with the worst case scenario, we fought on with hope, prayer and faith. Our lives were changed forever the day Sadie was born, and so were the lives of our first two children. We didn’t know the struggles we would face in days, weeks and months ahead. Living two lives, one in the NICU with my baby and one at home with my two other children, lasted six months.
It was the most difficult time in our lives. Looking back I have no idea how we did it. It is all a blur. But we put one foot in front of the other and made life work the best way we knew how. We could have never imagined how much this teeny helpless micro-preemie would teach us and change us for the better!
Six years later, looking back I see this as a beautiful journey. It is never easy; in fact, it is hard a lot of the time. I don’t like that my older two girls get the leftovers of me a lot of the time. I don’t like that Sadie experiences pain, hospitalization, fear, surgery and a childhood full of appointments instead of playdates. I don’t like that we have to make decisions that other families don’t have to make.
Looking back I have no idea how we did it. It is all a blur. But we put one foot in front of the other and made life work the best way we knew how.
But I love how far we’ve come. I love how much we’ve grown as a family. I love how much we’ve grown in our faith; I love the compassion that exudes from my family because of what our miraculous girl has taught us. I love that we’ve met people we’d never have met if our life was “normal.” I love that I get to celebrate milestones that other people take for granted. I love that I get to be these three kids’ Mom, and I wouldn’t change any of them for the world!
I See You by Ellen Stumbo
Having a child with a disability can be difficult. There are moments you wonder if anyone will ever understand or get what it is like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.
But you are not. Today, I want to tell you that I see you.
I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.
I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.
I see you at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.
I see you in the middle of the day; tired. Your hair pulled back into a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.
I see you at the support group. New parents are visiting with their baby. They seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate.
I see you walking into the school for the third time this school year, with a binder full of notes, lists, and goals. You don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.
I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave.
I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.
I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous.
I see you at social gatherings where well meaning people ask ignorant questions about your child or their disability. They make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious.
I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.
These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you.
Ellen Stumbo writes about finding beauty in brokeness with gritty honesty and openess. She’s passionate about sharing the real – sometimes beautiful and sometimes ugly – aspects of faith, parenting, special needs, and adoption. Ellen’s writing has appeared in Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia and the Huffington Post. She blogs at ellenstumbo.com
. Reprinted with permission of writer.