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).
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!!!
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
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