I am so honoured to be featured in Today's Kids In Motion magazine! If you're not familiar, Today's Kids In Motion is a Canadian pediatric health publication for families of children with special needs. I was thrilled when they reached out to me, asking if I would share an article for the Fall 2017 issue of the magazine.
My article is HERE! and I have copied it below. It might be a good read for anyone who is new to my blog!
Brennen's Unexpected Journey
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 pediatrician 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 (ie. 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.
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
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.
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.
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.
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
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.
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.
A huge thank you to Today's Kids In Motion for featuring us in their magazine! I am thrilled to be part of such a wonderful publication that deals with issues facing parents of children with disabilities in a positive way, and celebrates the joys of one of life's greatest gifts.