Thankyou. From the bottom of my heart and more then you will ever realise…THANKYOU. Today you took the time, and little as it was, it was so very precious. You took the time to see our son as a person, not just a patient.
Because, Nurse D and Doctor C, when we pulled up in this hospital carpark what did I see? I saw my son’s face turn to fear, tears fill his eyes, his lips tremble and his fists clench. For the hundredth time my heart broke for him and broke because I could not protect him from this fear, could not protect him from why it is here.
Then Nurse D and Doctor C you took the time. You became his friend, you paid attention to his boundaries, you spoke with him of Pooh bear and his favourite park, about his birthday and his party, you made a game of all that had to be done and you invited him to be part of it.
So now he is telling us a story, in the elaborate miming way he does, of the visit we had. Of a nurse with tickle stickers attached to colourful cords and a doctor with a little bear who helps him treat patients. Then inevitably about the park we visited after we saw you, prioritys don’t change after all.
The 20th of March was Boston’s two year cranioversary, two years since his big operation that went really well. What an amazing two years it has been, dotted with new experiences, awesome achievements and very little in the way of big scary medical stuff. The 20th of March was also the day we found out there is a whole lot of that big scary medical stuff on the horizon, including another cranial vault reconstruction.
I recently wrote a post about The Ocean of Emotions that we ride as part of Boston’s journey with Saethre-Chotzen Syndrome. I talked about the tidal wave that had just hit and how it can be overwhelming. Now I feel like we’ve moved from tidal wave to some sort of roughest seas on earth situation, where the waves are MASSIVE all the time and you just sort of begin to feel immune.
SPLASH yup there is intracranial pressure and Boston’s brain is too big for his skull….SPLASH we must create more room so another cranio reconstruction surgery needs to happen in the next two months, sorry what? your second baby is due in two months?…SPLASH we have to cut the really successful silicon sling that holds his droopy eye open, so there is another surgery that will need to be redone….SPLASH we need an MRI under anaesthetic before then and observations by the neurosurgical team…SPLASH also something strange is going on in this part of his head, maybe it is also affecting his spine. OKAY OKAY I am freaking drenched already!!
In my head that is what the meeting felt like. In reality everyone present was really supportive, helpful and positive…we even had a few jokes to lighten the mood. After two years of relative calm it feels like the next six months could hold the mother storm, in my heart I know it won’t really be that bad, after all everyone has the ability to find happiness no matter the situation we are facing.
Already as this new challenge begins I find myself being motivated to reach out to other members of the rare disease and craniosynostosis community. My thirst for knowledge surrounding these challenges is uncovering new information and building a better understanding of what our son will go through. We’ve been brainstorming how to navigate the rough seas in the most efficient, relaxed and positive way. Reaching out to family and friends, making lists and checking them twice, finding time to meditate and reflect. Reminding ourselves that through this time we will be guiding Boston on his journey but we will also be welcoming our newest arrival earth side.
I guess what I am getting at is for those who feel like the sea is just too darn rough and you are drenched to the bone and…lets face it… sometimes you feel like telling the world to GO GET PLUCKED…there is always a silver lining (for crying out loud there MUST be)… and maybe it is just time to build a bigger boat.
That is the bit of inspiration I am selling, and I am sticking with it 😉
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.