Dear Nurse D and Doctor C

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.

IMG_3633_fotorThen 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.

Nurse D and Doctor C

THANK YOU

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Hitting a medical storm

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.

In paediatric intensive care unit after his first cranial vault reconstruction in 2013
In paediatric intensive care unit after his first cranial vault reconstruction in 2013

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!!

A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples
A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples

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 😉

A nice reminder of how quickly we heal. This is a couple of weeks after major surgery
A nice reminder of how quickly we heal. This is a couple of weeks after major surgery

“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!”