The Ocean of Emotion; medical interventions

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.

Ocean of Emotion panaramaWe’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.

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“Why does his face look weird?”

She said with a look like she was trying to solve a puzzle, all frowns and confusion. I am not speaking about a specific little person but this look and similar questions is something we encounter every week. Predominantly from children, an occasional adult asks too, some almost as direct and others stumble over a few umms before getting out the intended query.

IMG_2049_fotorBefore I even fell pregnant I would think about the children I wanted and the thought, or fear I guess, would cross my mind “I hope they are okay, I hope they are normal”. I get nervous even typing that sentence because it sounds so completely horrible. I know I was not alone with that fear, Steve admitted similar thoughts and I can only assume most of the human population just want their children to be “normal”. When Boston was born I fell head over heels in love with him, I would not swap him for any baby in the whole wide world. But I did have times of absolute grief when I realised he was automatically put in the “different” pile.

I worried how it would affect him. His emotions, self worth, getting ahead in the world, being accepted by others, his love life, would he be teased or bullied, would this lead to other problems. And yes I will admit that when I first saw those puzzling looks and heard comments about “that baby’s head” my mama bear bristles stood on end and my heart ached for him. I just wanted people to see him as Boston, not as the baby with the different head and not as the kid with Saethre-Chotzen Syndrome.

But guess what? We are human and humans need to understand what they see, they need to explain their world in part through this sense and they are also fearful of the unknown. To those who do not know him Boston will be someone who looks unique. He may be described in this way just like someone is described by the way they dress, the colour of their skin, the gait they walk or the height they reach.

Cameron Russel says it perfectly in her Ted Talk ” Image is powerful, but also, image is superficial” (a good talk to get you thinking). What I have come to embrace is that Boston IS DIFFERENT. The way he looks is not all of who he is, but it is a powerful part of that person. I do not want him to feel like he has to hide those differences or try to blend in with everyone else. I want him to be proud of each piece of the puzzle that makes him whole and I want him to feel confident to express who he is to everyone he meets.

IMG_3399_fotorWhat I want for myself is to leave all the prejudices I unconsciously had so far behind me they look like a smarty on the moon. There were times when I would be scared of those who were different, those who were obviously harmless but still different enough for me to feel uncomfortable, scared I would not act correctly or that I would offend them (a working progress of awareness). Now I am the one seeing puzzled stares I can tell you that when someone takes the time to actually voice their questions (in a polite way of course) I really admire them. I wish that we could all feel safe and confident to embrace each others differences, maybe then there would be less fear, less bullying, less trying to hiding our true selves. I ask that anyone who can relate to what I am saying or feels moved at all, please practice acceptance of others and teach your children through all you do and say.

So what do I say to the question “Why does his face look weird?” ….well simply “That is just the way Boston was born, we are all born different and that is a really fantastic thing!”

The concept of strength and happiness

Well it is about time I updated Boston’s journey for those of you who are not in direct contact with the news source. The past two months have been dotted with appointments with all shapes, sizes and colours of specialists. Plastics, neuro, eyes, physio, occupational therapy, genetics and general paediatrics. Everyone is very pleased with how his surgery went and with his upbeat amazing skills at recovering (my words not theirs). So what comes next? NEXT far out I thought it was over!! (that is the super optimistic me)…. yes what needs to happen next to balance our little man (the realistic me).

The Bond Look

It is likely that Boston will have another major surgery before his second birthday to reshape the back of his head, although this hasn’t been put in ink as yet. The surgery will once again give his brain more room to develop normally and reduce the chance of intracranial pressure. He is booked in to have eye surgery in the next couple of months to attempt to lift his right lid up, though there is uncertainty about the outcome. A sling will be inserted that opens when the brow is lifted, unfortunately little people who have had cranial vault reconstruction also have had the muscles in their heads cut through, which can affect how much they can raise their eyebrows and give the bond look. However if the surgery is a success they will do a second surgery to straighten his eyes. There will be lots of patching to come so get your pirate voices ready arrgggghh!!!

mini pirate and crazy stead

Genetics are a bit puzzled at Bozzies totally normal blood tests. Due to quite a few physical indicators they believe he may have a syndrome that is also linked with craniosynostosis, but the proof is not conclusive yet. The current plan is to run more in depth tests on his DNA and see where the double helix leads. Finally, the physio’s and OT’s are happy with his recent jumps in development even though he remains behind the eight ball.

Apart from all of that our little man is nearly one and an absolute champion. He is commando crawling all over the place and has a wicked scream picked out for his frustrated moments (like YAY for us). Sooooo what has all this got to do with the concept of strength and happiness? Well I must say the past year has been unexpected and challenging, and full of the most beautiful praise from those we love. “You guys are doing amazing” and “You’re so strong” are phrases we happily hear quite often. Yet my head does not always get it. I am proud of the attitude and approach we have taken to Boston’s medical journey, but I also think there is hardly a choice.

We often look at situations from the outside and think how incredibly hard they would be, that we could not cope with anything like it. At this very moment I have close friends facing challenges with the most amazing attitude and strength…maybe I inspire them…I know for sure they inspire me. We see people endure hardship and we see their strength of character, the best side of the person they are.  It is hard to place your self in their shoes. But when the shoes are on something amazing happens…You look to the most positive aspect of the situation, you are aware of the knowledge and wisdom you are gaining, you see others that are in far harder struggles then yourself. When you get backed into a difficult corner you either accept it and snuggle in with a big cup of cocoa, or you stand there frightened and miserable forever. Human’s are programmed to find happiness, it is a concept I first heard of in a talk given by Dan Gibert (I thoroughly recommend you watch it). My life so far has proved his point correct, we really do just want to choose the cocoa.

With all this in mind take some weight off your own shoulders, because no matter what challenge comes your way you will find the strength, learn the lessons, inspire those around you and find happiness.

p.s this doesn’t mean we do not have poo days, cry regularly or would choose all the medical interventions that Boston has to have.
p.p.s nonetheless it does mean that we are eternally grateful to the universe for every bit of it.
p.p.p.s please continue the praise because it makes us feel amazing xoxoxox