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.

kiss boston

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.

The Art of Receiving

24 hours ago we launched a fundraising page for our son Boston. It felt really weird…

As many of you will know our little guy, cute as a button busy as a bee, was born with Saethre-Chotzens Syndrome which caused craniosynostosis. He has already had one major surgery for cranial vault remodelling, and this year we hit what seemed to be a medical storm resulting in… Boston needing another major surgery.

IMG_3867_fotorWe’ve decided to travel to ‘The Australian Craniofacial Unit’ in Adelaide. They are an amazing team who have dedicated their professional lives to understanding this incredible field. Founded and lead by Professor David David, an extraordinary man who learnt from the father of craniofacial surgery, Paul Tessier.

Although the choice seems easy I can assure you it took time and much deliberation. One factor that crossed the table was money. We are lucky in Australia, most medical expenses will be covered by medicare, but repeated trips to a city in which we know no one…that would be our responsibility. Adding together flights, transfers and accommodation for just pre operative visits…BOOM $3000. By the time we are heading home from surgery we’ll be up around $9000 and then there will be post operative check ups 8 weeks, 3 months, 6 months, 12, months. BUT there was no way we would let money be the decider in our son’s health, this is his skull we are talking about, his vision, his brain…his future. So the house deposit we’ve been saving got promptly dipped into, and we felt lucky we even had the option.

A few weeks ago my very good friend brought up the idea of fundraising. “hmmm like selling freddos??” I asked. Clearly I had no experience or idea about fundraising, but the other issue I had was it just felt weird. Asking for help felt strange, and for me asking for money felt very strange. Of course Boston’s health is an amazing and worthy cause, in fact any fundraising we did would also help to spread awareness about craniofacial abnormalities and that is a wonderful cause. But it made me nervous, were we worthy? did we have a right to ask? there are people fleeing war torn countries, surely we should suck it up? I set our original goal at $4000 until my husband pointed out that would only cover a small portion of cost and “ah what are you thinking Nell? just set it at $10000″… Why did it feel so awkward?

Well 24 hours ago we launched gofundme.com/bostonsadventure and we have just hit $7330 IN DONATIONS! Ahhhh YES-ONE-DAY- SEVEN-THOUSAND. To say we are completely gobsmacked, awed and overwhelmed is an understatement. The love and generosity that has spilled in has been the most heart warming thing EVER. Whether people have donated, sent beautiful well wishes or shared our cause, it has just been so beautiful to see the love that surrounds our son. And what have I been doing today? Predominately walking around with a stunned confused look on my face.

We live in a society in which we are pushed to focus on what we have, and are constantly encouraged to have the biggest and best of EVERYTHING. You can do it alone, and do it better then the “Joneses”. The reality of being connected to our community and village takes more energy then waking up next to your cousins hut, these days family is spread across the country and around the world. Yes, we are all connected through technology… yet rarely do we hold each others hands… and sometimes we forget. We forget that we are nothing without each other. We forget that giving to those we love can be the most cherished part of our lives. We forget how to rely on others, and how to let others feel the joy of helping us.

To everyone who has taken part in Boston’s fundraiser today and into the future, we can not thank you enough. Now with every flight, appointment, blood test, scan and surgery, I will carry the thought of all of you. You have ownership of Boston’s journey…we are in this together… and that beyond all dollar signs is the most important thing xox