By Julie Brocklehurst
Brennen was born full-term, two days before his due date, in Sacramento, California. It was a normal pregnancy and delivery, although I replay it constantly in my mind, trying to recall if there was something I’d missed. I was sent home from the hospital with a “healthy baby”, and we were over the moon with joy and love for our precious baby boy! Until he started crying… and crying… and crying. You might think I’m exaggerating, but it is the truth – he didn’t do anything but cry for 5 whole months. I knew there was something wrong, but had no idea what. We went back to our doctor every other day. She told me he was a “colicky baby” and he would outgrow it. That didn’t happen. Feeling like I was not being taken seriously, and getting no sort of resolution, Brennen and I left California and came home to Newfoundland where we had the loving support of my family.
Almost immediately after arriving back home, we got in to see a paediatrician at the Janeway Child Health Centre. Though I knew there was something wrong with my child, I was not prepared for what I heard on that first encounter. Words like “serious”, “urgent” and “critical”. All of a sudden we were in an emergency situation and needed a battery of tests to be done right away! We were sent to neurology, cardiology, genetics, ophthalmology and audiology, among others. Brennen had a CT Scan, MRI, EEG, EKG and ultrasound all the matter of days. It was a whirlwind of tests and probes. I couldn’t believe what was happening. I knew that Brennen was behind on his milestones (i.e. hadn’t met ANY), and I knew something was not right, but I wasn’t prepared for what they were about to tell me. My perfect little baby boy had something seriously wrong with him and there was nothing I could do about it. It was such a helpless feeling. I knew they were testing for conditions that I couldn’t even bring myself to contemplate. We were referred to physiotherapy, occupational therapy and speech therapy, all to begin immediately.
Almost a relief
When Brennen was eight months old, after blood test after blood test had come back negative, we were given the diagnosis of Spastic Tetraparetic Cerebral Palsy. Spastic meaning stiff muscle tone, and tetraparetic meaning that it affects all parts of his body. As difficult as that was to hear, it was almost a relief. They say the scariest thing in life is the unknown, and now at least we knew what we were dealing with. It wasn’t going to go away. It wasn’t going to get better, but it wasn’t going to get worse.
As well as I think I handled the diagnosis, I was surprisingly knocked off my feet by the suggestion that I join a “CP Support Group”. Was it THAT bad that I needed a support group?! Support groups, I thought, were for people dealing with some sort of horrific tragedy or loss. I wasn’t one of those people, was I? What I was about to learn was that I was going through both of those things, and all of the emotions that go along with them. The tragedy of what had happened to my perfect unborn baby, and the loss of the child that I thought I was going to have. It was a mourning process, for sure.
When I think back on those early days, when I thought I was alone in the world, and that I would never have any sort of “normal” life again, I wish I could go back and tell myself that it really was going to be ok. When I look at our life now, I could never imagine things any other way. Brennen is a happy boy who loves life and spreads that love with everyone who knows him. He brings us so much joy every day and has taught me more about life than I ever could have imagined.
The past twelve years have been filled with doctors’ appointments, surgeries, therapy sessions and ISSP meetings. We have spent a small fortune on medical equipment, adaptations and therapy devices. We have learned who our friends are and who they are not. There have been dark days, but they make the good days that much better.
Investing time and love
Most recently, Brennen underwent a spinal fusion surgery where he had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. He has been doing surprisingly well since his surgery, which is great, but I cannot deny the true and very real pain of knowing that my child has to experience a life that has so many struggles. Brennen is amazing and he fights it with everything he’s got. His resilience, determination, and courage are far greater than my own. The journey we are on is a unique one, and I have come to terms with the fact that there will always be challenges and road blocks along the way. In the meantime, I will invest all of my time and love and energy into my son and supporting every single one of his complex needs.
Brennen is now headed into Grade 6, and I am thankful that he has wonderful teachers who love and support him. Brennen gets lots of attention and cuddles and love at school, and really, that is what I want for him. I want him to be happy and to be surrounded by love. That is all. Anything beyond that is a bonus.
This whole unexpected journey has taught me so much about myself, my relationships, and about love in general. I never could have fathomed that in such a short time, Brennen would change my world in the best way possible. He continues to teach us what strength truly is and we are so inspired by our brave little boy. Life is good, because he is in it.
Julie Brocklehurst is a writer, disability advocate, and mother to a young boy with cerebral palsy. She created her blog, ‘Tiptoeing Through’ (throughthetulips.ca), as a place to share some of her thoughts and feelings about life, love and the unexpected journey of raising a child with special needs. It has become a resource for other parents, offering support and bringing hope and encouragement to the special needs community.