At the end of each year, past students from the high school I attended are asked to return and speak with small groups of current graduates in their final week of school. The school has called this ‘Evolution Day’ and, as part of it, the girls are able to hear from past students and listen to some of their reflections on life after school. The past students are of all vintages, from the newly graduated to the more mature of us and, no doubt, offer a wide variety of thoughts and perspectives based on their experiences. I volunteered to speak at the end of 2012, so I thought I’d share an excerpt of my talk to the girls.
As I drove to school for Evolution Day 2012, I felt very nervous and tried to work out what exactly was making me feel on edge – was it talking in front of people, which I haven’t done for a long time? Was it about the story I was going to tell? When I realised that it was because I was pretty certain I was going to cry and felt uncomfortable about doing so in front of a room full of people, I let go a little. I reminded myself that it was okay to show vulnerability, that if I was going to do my story justice, I had to have faith in the girls I was addressing to accept me and my emotions and my story as it was, without putting on a brave face or pretending to be someone I wasn’t. And did I cry? Oh Lordy, yes. For the girls who remember my talk in years to come, I will go down in history as the crazy emotional woman who cried through a 20 minute presentation. And that’s okay with me 😉
Our brief was to share the four things we think the girls should pack in their ‘bag’ for the journey ahead. After much deliberation, these are the four superpowers I decided upon – a sense of humour, an open heart, a net and a compass. These are explained in more detail below…
A Sense of Humour: As I’m sure you already well know, not everything in life is going to go the way we plan it. And some things, whilst funny in hindsight, are just plain hard to live through. But I have learnt that if we have a positive outlook, if we can laugh at ourselves when things just seem unfair, that’s half the battle.
An Open Heart: Unfortunately, broken hearts are part of life. They hurt. I have learned that either we can pack up those broken bits of heart and never know what it feels like to really love or to live, or we can ‘dance like nobody’s watching’ and ‘love like we’ve never been hurt’. If we have an open heart, we open ourselves up to pain and suffering, but also to amazing joy, love, and blessings.
A Safety Net: I have surrounded myself with a ‘safety net’, made up of the kind of people who love me for exactly who I am, but who aren’t afraid to ask me some tough questions when they need to. They are happy to celebrate with me, but know how to cry with me too. They move mountains to support me, but I can’t just assume that they’ll be there no matter what. I am part of their net too. I have to nurture the friendships that are important to me, let them know they are loved too. Different people might support you in different situations, and perhaps those who make up your safety net, whether it includes God, family or friends, may change over time as you go through various phases of your life. What matters is that you have a net, and that you nurture that net, because you never know when you might need that net to catch you.
A Compass: There’s a marketing concept we use in our business called ‘true north’- our ‘guiding light’, I suppose. In the process of creating and building our business, we effectively decided what kind of personality our little company would have and what values were important to us. Then, if ever we were confronted with a difficult decision, we could think about our true north and decide whether a particular course of action is consistent with our values. A compass can be a very handy navigational tool in our personal lives too. Sometimes we make decisions that are maybe a bit silly, that don’t fit with our true north, but I’d like to think we learn from those and they help us remember who we really want to be, and that maybe next time it’s easier to follow where our heart says our true north is. But sometimes the decisions we face are big ones and we need to stay true to who we are, to where the compass is pointing, even if it feels like a much tougher road to follow.
I began by telling the girls a little about my journey to date. I told them a few of my travel stories from backpacking with three of my girlfriends. I told them of my first love, and the love I ended up marrying. And then I told them of a time when I needed all four of my superpowers…
I truly believe that everyone writes their own story, and you’re in the process of writing yours. Today I’m going to share with you a little of mine.
In July last year, I asked my mother-in-law to take my measurements so that I could have a dress made for my sister’s wedding. As she was taking those measurements, she said, “Annie, are you pregnant?” I said, “pft, noooo” and laughed it off. But, as it happened, I had a pregnancy test in the bathroom, so the next day I did one… and it was positive. Then I rang Ben and asked him to buy another pack, and I did three more… all positive. Eek. Wasn’t exactly in ‘the life plan’ to have three children under four, but eventually I got over my denial and embraced the fact that we were going to have another baby.
We had a scan at our Obstetrician’s office at 9 weeks and I saw a tiny little heartbeat on my tiny little baby. I’m not sure how much you know about babies, scans, prenatal testing, but the next milestone is about 12 weeks – it’s the end of the first trimester and most mums-to-be breathe a little sigh of relief about then as the chances of miscarriage drops considerably after that point. In addition, the morning sickness and extreme tiredness tend to wane a little. So, it’s a good point. It’s also the time that you can have what’s known as ‘nuchal translucency’ test – whereby they combine the results of a blood test with an ultrasound to tell you what the likelihood is that your baby will have some of the more common chromosomal abnormalities. I’m guessing they call it a nuchal test because one of the things they check is the size of the nuchal fold at the back of the baby’s neck, which can be thicker with some conditions.
So Ben and I went along to our nuchal scan and saw our healthy looking baby with its little heart beat and the sonographer told us the baby looked ‘structurally good’. As part of the routine, which we were well familiar with as this was baby #3, we then sat down with a doctor who puts all the relevant numbers into the computer and spits out a result. With Sam and Charlie, this number had been about 1 in 2000. On this particular day, the doctor said that our chance of having a baby with Trisomy 21 (or Down syndrome) was one in 14. Hmm, not quite the odds we were looking for. Our world shifted that day. The rest of the meeting was a bit of a blur, then we went and sat in a park, cried and talked for a while. We had difficult conversation #1 of many.
My sense of humour kicked in. “Darn it, I told God not to challenge me on this one.” Ben said, “Well, there’s your problem. You should have just flown under the radar!”
We were afraid. We had visions of every stereotype we’d ever heard about Down syndrome, we worried about how having a disabled child would impact our marriage, the children we already had, our finances, our plans for the future, our lives in general.
At this point in the game we had two main options – we could wait it out until the baby arrived, or we could do further testing, but that testing involved a risk to the baby. We did a lot more crying and talking. Then some days we just couldn’t talk about it anymore. Our ‘net’ kicked in and friends and family members came and took the boys so Ben and I could spend time alone, people brought food, girlfriends sat on the floor with me and cried. We rationalised the numbers over and over and worked out that 1:14 meant that there was a 7% chance our baby would have Down syndrome, so 93% chance everything would be okay, right? In some ways we reacted as though we’d been given a definite diagnosis, but we still had hope that things would work out the way we wanted it to, that we wouldn’t be ‘the one’. We decided that this baby would be beautiful and loved no matter how many chromosomes it had, but we would go insane waiting it out. So we researched and decided to undergo an amniocentesis, something I said I would never do – which involved having a needle inserted into my belly to draw out a sample of amniotic fluid, and the genetic material of the baby would be checked to see how many copies of the 21st chromosome it had.
On the day of the amnio, I felt remarkably calm. When we had our ultrasound before the procedure, the sonographer said that she didn’t see any ‘markers’ which would indicate Down syndrome, and at that point I was almost ready to pack up and go home. But I didn’t. I did my relaxation breathing, a doctor put a needle through my belly and it was all over pretty quickly. Then we had to wait about 48 hours for the results. Longest 48 hours of my life. First day I talked myself into the fact that they wouldn’t be ringing me that quickly, but by the second day I was completely nuts. By 3pm on the second day, I couldn’t cope any longer and made Ben ring the obstetrician, who was in surgery. She called back a little later but I couldn’t bear to take the call and handed it to Ben to be the brave one. I didn’t even want to listen to it on speakerphone. I just knew what the answer was going to be. Ben just nodded, “It’s positive. Baby has Downs.”
I have to tell you, there is a big difference between someone telling you that there’s a pretty good chance your baby is going to have Down syndrome and receiving a definite, 99.9% positive diagnosis. I had some pretty good theories about how the world should work, what was right and wrong… but I had never walked in these shoes before. We were then given about 48 hours to decide whether we should have a ‘termination for medical reasons’, which we didn’t.
The next five months were amongst the hardest I have had to live through. I had moments where I felt completely invincible, where I knew it would all be okay; and I had times where rocking quietly in a corner seemed far easier than having to face the world and be a grownup. I had an increasingly expanding belly with a baby inside that we’d been told wasn’t conforming to society’s standards of perfect.
But I’m not telling you this story because I want to warn you about the scary things that may happen in your life. This tale isn’t a tragedy, it’s a love story.
On 20th March 2012, I gave birth to our third beautiful boy who we named Nicholas. He has white blonde hair, with a big curl that stands up on the top of his head like something out of Dr Seuss, and big blue eyes. He is loved – by us, and our wide network of friends, by his grandparents, by his 16 cousins, and uncles and aunties, and most especially by his two big brothers. He may take a little longer to do the things that kids of his age are doing, but it’s not a competition. Nicholas is writing his own story too.
Every day that I get to snuggle his little body, see his big beaming smile, see how loved he is, I am thankful for the net, the open heart, the positive outlook and sense of humour, the compass that guided us to this place.
There was a time when this story could have turned into a tragedy, but there is always a light on the other side, even if it’s different to how we expected it to look. Sometimes when we step into the darkness, we just have to trust that on the other side there’ll either be ‘solid ground on which to stand or wings to help us fly’*.
To finish, I’m going to leave you with a poem that was given to me by a beloved teacher when I was in grade 12. My copy has travelled the world and gave me some perspective in times when I needed it the most:
After a while you learn
The subtle difference between
Holding a hand and chaining a soul
And you learn that love doesn’t mean leaning
And company doesn’t always mean security.
And you begin to learn
That kisses aren’t contracts
And presents aren’t promises
And you begin to accept your defeats
With your head up and your eyes ahead
With the grace of a woman
Not the grief of a child
And you learn
To build all your roads on today
Because tomorrow’s ground is
Too uncertain for plans
And futures have a way
Of falling down in mid flight
After a while you learn
That even sunshine burns if you get too much
So you plant your own garden
And decorate your own soul
Instead of waiting
For someone to bring you flowers
And you learn
That you really can endure
That you really are strong
And you really do have worth
And you learn and you learn
With every good bye you learn.
~ Veronica A. Shoffstall
Thank you for sharing in our story today. I wish you every blessing as you continue on your journey, as you go and write your own story.
*I heard this quote once but can’t for the life of me find it again, so please forgive me for the lack of source. If you know where it comes from, I’d love to know!