20 today

20 years ago today, I had just given birth to our first daughter. She arrived at 6 am on the 29th December 2004. I was so excited! I was going to be a Mum! I truly cherished this new adventure. This little baby was going to have the best time ever! As many new Mums, I had lots lined up for him or her. We were going to have so much fun together! Amazing days out, games and parties with friends, I was going to teach her so much about how to become the best human being ever! We were even going to travel the world so that I could show him or her the many places I was lucky to discover when I was a little younger.

Silence at first

There was no sound when Lesley was born. I remember the room sounding and feeling “stone cold”. There was no direct body contact with Mum either. Instead, our little girl was placed in what I would refer to as a “plastic box in the corner”. I kept asking if she was OK but all attention was on this new little baby clearly struggling to take her first breath. She looked chubby and so calm.

Lesley was born with Down’s Syndrome but that was going to be the least of her worries moving forward! Over the next 48 hours, we would find out that her bowel was about to rupture. The surgeons were going to do everything they could to save her, but she was very ill. All we had to do was sign the emergency surgery consent form and hope for a very special New Year’s Day. Talking of signing your life away! Hey! That was really not part of the deal!

Happy New Year?

It was 10 minutes past midnight when one of the surgeons who operated on her that night knocked on the door. “She is OK. Give the nurses 10 mins to sort her out before heading up to the Intensive Care Unit. And don’t be spooked by all the cables around her. Happy New Year.”

Somehow, those words did not sound like they were carrying a joyful message of hope for the new year. They sounded more like a “good luck” for the road ahead.

An adventure, it has been to date for sure. One that opened the door to a depth of feelings we never suspected. Unconditional love, utter despair and exhaustion, depression even and a persistently unnerving feeling of combined uselessness and hopelessness. Conversely, I had, at the time, never really come across the concept of resilience but boy didn’t I learn about it since!

Welcome to Holland… Holland?

It was simply a deviation on that perfect life road we had painted in our minds in great details for that new little beign. You may have heard of the poem “Welcome to Holland”? https://www.emilyperlkingsley.com/welcome-to-holland

In this truly inspiring essay, American author and social activist Emily Perl Kingsley gives us a taste of what it feels like to land in a place where you had not intended to. The plan was very clear: we were flying to Italy! Instead, we landed in Holland. Surprise! Becoming the parents of a child with special needs means you are entering a parallel world without an instruction booklet. And it’s brutal. Initially, it felt as if the world had collapsed around us. How come? Why? What had I done to make my little girl so poorly? And why was only one side of our family on board with this? Hadn’t they ever been to Holland? Their reaction hurt. It hurt really bad, but despite it all, we knew we would give our little girl the best life ever, no matter what was thrown at us.

It’s a good job we did not really had time to realise what had hit us. We were too worried for her life to worry about this. The only way was up and positivity became our best ally. Because let me tell you, quite a bit was thrown at our little girl! Hirschprung’s disease, nystagmus, hearing issues, disrupted sleep, behavioural difficulties, autism, hypothyroidism, hip dysplasia, cortical visual impairment… I remember getting to the point that if we left a doctor’s or hospital appointment without a new label, I truly felt like celebrating!

So, today is a truly special day. And I wanted to share it with you all. Because if you have found yourself in that situation, happen to have just given birth to a child for whom things have abruptly deviated from the norm, or are beginning to come to term with any unexpected diagnosis, I wanted you to know that you are not alone. Initially, nobody can tell you what’s ahead of you. Your partner can’t, your family and friends can’t either; nor can the doctors. Up to very recently, doctors and nurses were not trained to deal with special needs, certainly not in the UK or France, the 2 countries I have had many dealings with for the past two decades. If they did, the ones we encountered clearly skived those lectures.

It may not be a straight road. Just enjoy the unexpected scenery.

Is that light I can see?

Thankfully, we are beginning to see very slight changes in medical training, which is still in its infancy, so do not get too excited, but they are trying and doing their best with the resources and understanding they have. All I want to shout though is “Please, let us in!”

I do strongly believe that parents of children and adults with special needs really need to be brought into medical settings to better support new parents. We may not have received extensive medical training, (although every day is a school day when you enter this parallel world!) but we could bring a little relief to those who, like us, suddenly found themselves propelled into an unexpected place.

Lesley, who despite her adult age, is very similar to a 3-year old in terms of needs and understanding, has taught us so many life lessons. She may not be able to communicate easily, to deal with the outside world or even to get her needs understood by those who do not really know her. She does not do celebrations and does not want to hear about her birthday, about Christmas or any other grand family event. But to us, this day is truly loaded with significance as to how to manoeuvre life following an unexpected landing.

It's all inside us!

Hope, relief, wellbeing are sometimes only a smile, a few words, even a silence away.

They all depend a great deal on what we know, on how we perceive any situation at any given time and on what we are prepared to do about it.

We have the power to re-design our story for a better future. Do not let anybody tell you otherwise.

Time to open the doors onto a new forward-thinking chapter. It is certainly my ambition to help you with this by sharing knowledge, tips and inspiring stories to help you lead the way. You may not be able to celebrate today but who knows what tomorrow will bring?

20 today!

8 tips to get you off to the best start!

So lovely to meet you…