JOURNEY AS TOLD BY LUCAS
My hydrocephalus journey started 14 years ago soon after I was born at 25 weeks gestation in Perth WA. I ended up with post meningitic hydrocephalus with aqueductal stenosis which started a roller coaster ride of surgeries, recoveries, revisions and hospital stays for observation. I don’t remember those earlier years of surgeries but my parents tell me about them and show me photos.
I had my first VP shunt put in at a few weeks old. I then had a new programmable shunt valve put in a few years later, but the original one was left in there. I’ve had blockages, a cyst formed which is now also drained, more blockages, and a complete disconnection with the tube ending up coiled in my tummy. My left ventricle is large and there was much discussion about shunting that side too, but it was decided not to.
I am also autistic and between my hydro and my autism it took me much longer to achieve certain milestones like talking, sitting, crawling, walking, bike riding, oh pretty much everything. I had some wonderful OTs, Physios, Speech Pathologists, Specialist Doctors help along the way. It also took patience and an acceptance that my journey was my own and it would take time.
Besides all my frequent hospital related events I still often experience what we assume are transient blockages with extreme headaches, vomiting and slurred speech. These episodes are scary and I get very upset thinking my shunt is failing again. Other days I have what we call a tricky brain day when I feel tired, my memory struggles, talking can be difficult and I lose my appetite. This can affect my learning but since I’m now home schooled I can be a bit more flexible and take my time.
I am super sporty and I enjoy outrigger paddling, soccer, golf, dancing, body boarding, cycling, oh, lots of things really. I performed in a production of Les Miserables last year and I’m a volunteer bushfire cadet. I have a part time job and I homeschool so I keep very busy. I do feel quite down about things sometimes, some days it’s hard to feel like a hydro warrior but I try to focus on the positives and how far I’ve come. People often freak out about me doing sport and activities because they worry about my head, but my parents and I have decided I need to live my life, be cautious but not overly so.
I’m trying to be as involved as I can be and living life as fully as I can and enjoying every day. Oh, also, guess what…I can solve a rubik’s cube in less than 45 secs so I think my brain is pretty awesome!