People often hear Boston’s story and comment how strong we must be to go through everything, but the fact  is our challenges are not constant. For our family the medical journey is like a swim in the ocean. Some times it feels like you have just dived under one wave and are up gasping for air as the next crashes on your head. But there are many many days where the ocean is so calm you can see the bottom and surfers sit around looking bored. This extremely sophisticated pie graph demonstrates exactly what I mean.

We’ve had a tidal wave recently. Boston has been out of the surgery woods for 18 months now, its been pretty blissful. But last month one of our routine opthamology check ups uncovered that Boston’s optic nerves have mild swelling. This is a sign that there could be intracranial pressure (ICP or pressure in the head). It does not come as a surprise, we always knew this was likely on the cards for our little saethre-chotzen warrior god. But…it still stinks like a week old egg sandwich.

Rewind and the last two months have been choppy waters. In December we found out Boston has fluid in his middle ear, resulting in mild hearing loss and the possibility of grommets (not a big deal, but added to past surgeries its ONE more anaesthetic). Then there has been lots of routine check ups (paediatric, ENT, craniofacial clinic) and new therapists (physio, OT and speech). After six months of relatively nothing we’ve been going pretty flat out.

Fast forward to getting the discovery of swollen optic nerves and possible ICP, we actually get to go straight from the Ophthalmologist to the Cranio team who happen to be having a clinic “Just into the lift and up one floor, they are waiting for you”. There are questions and explanations and possibilities. A CT is ordered (oh great ONE more anaesthetic) and we leave with a lot of if’s, but’s and we have to wait and see’s. My mind races as the possibility of another big surgery hits, our second baby is due in 3 months and I wonder how that will affect my ability to be there for Boston, seven days in hospital recovery with a newborn ahhhhhhhhhhh!!!!!……This is the tidal wave.

After a couple of days the wave passes. I did a little crying it out…family and friends are there to share the weight…and happy go lucky mindset kicks in. Sure the sea is still rough but we have a life boat… all in all life could be a lot worse, but lets be honest… can not wait to see those bored surfers again.