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.
Whether 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.
nella inspired 
Hi Nella,
Thank you for this post and for opening up about your life and beautiful boy.
I live in Adelaide and discovered your website after we found out our little girl (first child) was born in August with Saethre Chotzen Syndrome. She was born just like Boston, after an uncomplicated, great pregnancy and birth, with no sign that anything was wrong; but when she was born with a cleft palate, anterior anus and dysmorphic features (although no visually apparent craniosynostosis) it was obvious that the little girl we had planned for wasn’t the one we had brought into the world.
She has a 5.3MB deletion and since then we have been coming to terms with what this is likely to mean for her. Every time she meets another milestone we get filled with so much happiness and excitement but we’re always waiting for the point when she’ll start slowly falling behind.
I can absolutely relate to the feeling you get listening to other people discuss their child to be, and at times I feel foolish for having talked that way about my daughter, discussing plans for primary and high schools, wondering what she would study at university… all from the false sense of security I had that all of the scans and tests I had done showed a perfect, syndrome free baby was coming our way. Now I don’t even know with certainty what to expect in three months time, let alone in the future.
This post and many of your others have given me inspiration to embrace our ‘new normal’ and reminds me that we are not alone in navigating through life with a child who has SCS. We enjoy her for who she is at this very moment and celebrate every milestone she reaches.
You’ve even inspired me to keep another child on the cards for our future.
Wishing you, Boston and your family all the best, and look forward to more posts and pictures of your beautiful family!
Dear Vanessa,
What a beautiful comment to wake up to this morning, you had me tearing up the whole way through. Firstly congratulations on your beautiful girl, and well done on being so educated already! (I think I put my head in the clouds for at least 3 months) Everything you said I identify with so much. There is much unknown, you just have no idea what you are planning for and in the end it really is about embracing what is happening RIGHT NOW.
I hadn’t considered schooling too deeply but once I became aware that Boston was treading his own path when it came to learning I began looking for options. He is 3.5 and I am still not sure what will suit best because he is changing all the time. What I know for sure is that many options exist, my top priority is facilitating an education that will inspire him and bring him happiness, if that means trial and error I am up for it.
When my husband and I got the all clear from our genetic tests number two seemed a great possibility, but we were still given a 1% chance of another SCS babe. I love our son and would not swap him for the world, but I really did not want to see another child go through the medical trauma he has. We took our chances and Ruby was the result, chromosomally normal but absolutely extraordinary in our eyes. We don’t believe we will have more biological children but are keeping the option of adoption incase we want to grow the family in a few years 🙂
I am going to assume you will be under the care of The Australian Craniofacial Unit in Adelaide. We moved Boston’s care there this year and have been so impressed with how they co-ordinate their team, their depth of knowledge and their genuine passion in the field of craniofacial anomalies.
If you would like to meet up one day email me at janelle.gow@hotmail.com. We will be travelling to Adelaide periodically in the coming years and it would be so lovely to meet another SCS baby.
Good luck on your journey, I have no doubt you will do the most amazing job as the mum of your beautiful girl.
Nell xo