To My Past Self – Here’s what you didn’t know on the day of your son’s diagnosis

This is a post I originally wrote for The Mighty, when they asked “If you could go back to the day you got a diagnosis what would you tell yourself?”


 

Today, the doctors will tell you that your baby boy is missing part of his DNA, and they do not know exactly how this will affect him.

I know you want to meet the news with dignity and grace, because this is not a diagnosis. This is your son, and you enthusiastically accept every part of him.

That is not entirely what will happen.

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As you sit in front of the panel of experts, you will be commendably cool and calm, nodding at their carefully-worded responses as your stomach knots and your throat aches. They won’t see the ball of emotion that is rising slowly from within.

You will securely place your beautiful firstborn in his car seat, hop in the passenger side, and wait until your husband pulls onto the highway before, finally, the tears come. You will sob as a sadness takes over that you have no word for.

In the days, weeks and months ahead, that sadness will visit you. It will surround your worries and fears and blur your visions of the future with its salty tears. And the sadness will make you feel guilty, because you never want to feel this way about the baby you love so much.

I am writing you to say: Everything is OK.

The sadness that is hurting you — embrace it. You are not a bad person for dreading this challenge. This pain is nothing to be ashamed of or hide from. This journey can chew you up and spit you out, pummel you down and lift you up. You may laugh with abandon and cry with despair, sometimes at exactly the same time. I am not going to lie — this is going to be hard.

But…

It will also be the most joyful and rewarding experience of your life. You’ll feel gratitude for the smallest things. You will learn a new respect and acceptance for others. You will help spread awareness of rare disorders and craniofacial anomalies. Your community will come together in such unexpected ways to support your son’s journey.

Oh, and your son — what an amazing person he is. He will continually surprise and delight you with each of his successes. His personality will be wonderful and unique. He will melt hearts and break down barriers wherever he goes. And dear one, he is happy.
So here I sit, your future self, sending love to you always through this incredible journey and letting you know: Everything is OK.

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Could you parent a child with special needs?

Well here is the truth of it…you probably don’t get a choice.

Since Boston was born the way I listen to prospective parents discussing their future children has changed. I hear them gush and plan and talk about who they will look like and what sports they will play. There is a weird certainty to these conversations, like the path is laid out so clearly one could almost touch it. There is no judgement as I listen, I find any planning of children utterly joyful, but there is a little thought that almost always crosses my mind.

There is a chance the soul who chooses you will be extra unique, that your child like ours will have special needs, and I see that you do not see this as part of your path just as we also did not.

SN BosWhether you believe you could or could not cope with special needs the fact is you probably won’t have a choice. People often ask if we knew Boston had a syndrome before he was born. Nope; perfect pregnancy, wonderful scans, amazing birth. No sign that anything could be out of the ordinary with our babe. But it is a story I have heard in our community of unique souls over and over. Whether it is a saethre-chotzen, craniosynostosis, down syndrome, asperges, autism…the list goes on, and most of us had not a clue to guide us.

I want to share a poem by Emily Perl Kingsley with you, it is called ‘Welcome to Holland’. If you are a parent of a child with special needs you may have already come across this one. I want to share it because here is the thing, let me reassure you, if you happen to have a child with special needs you will cope, maybe not all the time but on a whole YOU WILL. More then that, you will gosh darn love those windmills and tulips with every ridiculous inch of your soul 😉

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Room to breathe; Boston’s Second Surgery

I can hardly believe that this time last week we were sitting nervously outside the paediatric intensive care unit. Hours before we had handed our son over to the super hero surgeons (dreamteam ‘Australian Craniofacial Unit’) for his second skull reconstruction. Officially ‘front orbital advancement and cranial vault remodelling’. Lets be honest I was feeling about a million things at once, and yet not really feeling them at all… because who knows what kind of an outward mess that would have projected.

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Rewind 7 months,  I sit in Boston’s routine eye test and hear the doctor say what I really don’t want to hear;

doctor “his optic nerves are swollen”

me“no, don’t tell me that”

doctor “sorry but they are”.

From that point on there was worry, worry about Boston’s brain and the fact it was under pressure and out of room. Surgery was booked, surgery was cancelled, high risk, low risk…who the heck knows risk, second opinions, more appointments, lots of information. Seven months of feeling like we didn’t have a clear picture but what we did see concerned us. Now here we were, waiting for the news that all was well.

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Then the news came, he was okay, we would see him soon, all went well. HALLELUJAH!!  In the following hours team members dropped by, specialist surgeons, leaders in their field. They tell us how tight his brain had been, the lining was transparent from the pressure, in places the brain was protruding through the thinned skull. They smile as they explain what was done and that his brain now had plenty of room. Ahhhhhh….deep breath…big sigh.

Now we just had to get through the next few days, this is second time around and we know how fast he will heal, so as I walk through the intensive care doors I bite my lip and tell myself ‘all will be well soon’. There is not much that will prepare you for seeing your child lying distressed and groggy with a gazillion tubes running in and out of their body (okay to be fair there were six). It is like a sucker punch to your gut, but instead of yelping with pain you swallow hard and try to look brave, you are the rock in this situation. I pulled the “everything is fine baby of mine” face while the tears made their escape.
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The days rolled over and with each one I had more room to breathe. Ahhhhhh….deep breath…big sigh. I began to realise that for the last seven months I was holding onto fear, worry, gut instinct, confusion, anxiety. I watched Boston’s head as the bruising rose to the surface, as the swelling went up up up then started back down, his features though changed were still my son’s and I loved him beyond words.

Now I could rest assured, I had room to breathe… and so did his brain.

IMG_4275_fotorTo everyone who has held Boston in their hearts through this journey we can not thank you enough. You’re support and love has made all the difference xoxo ❤

One week post surgery, our little cranio warrior
One week post surgery, our little cranio warrior