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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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

How to cope with the lead up to surgery

Next week the most important person in our world is facing his second major surgery. Some very skilled surgeons will cut open his head, carefully remove his skull from around his beautiful three year old brain, then cut it up, remould it and put it all back together with the help of a little titanium. No big deal.

IMG_3925_fotorOkay lets face it most parents would have a heart attack just contemplating the thought of something like this. So how do I cope with impeding poo scary surgery. I like to call it the delusion technique… has a romantic sound to it right? Pretty much what you do is 90% of the time you go about life pretending like everything is normal. Make small talk with neighbours, complain about the weather, plan your next family camping trip, post adorable photo’s on instagram. Occasionally you will have flashes of walking away from your baby (yes three is still a baby) who has fallen asleep in your arms with the help of some gas, walking away and knowing his life is someone else’s hands, walking away sobbing as controllably as possible. When those flashes come up you just swallow really hard and push them back down. It will probably make you feel ill, work through that though, and soon enough you can go back to pretending all is normal. 

So that is it! Super simple.

🙂

Okay… okay… that is part of what I do, but it isn’t always very healthy and it does need a little back up. So here is the top five other things I do to help ease the anxiety.

  1. Have emotional meltdowns. I use my husband. He is my rock and safe place, so if I need to release it all in a not so pretty way that is where I head.
  2. Talk about everything with someone who cares. Cares about you, cares about your child and has unconditional love. I have some special girlfriends for this.
  3. Meditate. I am not always spectacular at having regular practice but during these times I find some mindful meditation eases the world off my shoulders. Still loving the Headspace app.
  4. Surround yourself with support. We have the most wonderful family and they are there every step of the way. My mum is literally there for every single appointment, and it truly is a blessing.
  5. Keep life balanced. It is so important during these times to do a little of the delusion technique and bring fun and joy into life. Enjoy good food, take a walk somewhere beautiful, be super silly with your children and breath deeply.

That is really it. Sort of super simple.

xox