Part 4. The new normal

During my pregnancy, I was working as a waiter at Marios’, a cafe in Fitzroy. The cafe has been there for 27 years and has many regular customers who have been going there for years. It’s the kind of place where you need to get along with the customers as well as the staff and owners, as they are as much a part of the furniture. It’s one of the things that I loved about the job. I had returned to hospitality after 5 years away from the industry and I was really enjoying it. I had worked at Marios from 2001 to 2005 when I left to go and find a career. I’d had a quarter-life crisis and after racking up 10 years as a waiter, I decided I needed to do something meaningful with my life. Whatever I did, it had to be noble and worthy. That is something that has always been important to me. I have always shied away from the corporate world of money, ambition and power. I have never wanted to be defined by my job.

I left Marios’ to join the police force. (Bad choice if you don’t like issues of ambition, power and being defined by your job!!) After 2.5 years of stress, heartache and anxiety which was mainly due to the size of my IN tray of paperwork and less to do with the horrors out on the street, I resigned. It wasn’t for me. Yes, I was earning slightly more money than waiting tables but I was drowning in paperwork and the job was consuming every waking hour of mind and most of the sleeping ones too. I couldn’t find a reason to stay so I left.

Then I worked as a sub contractor for a company installing eftpos machines. The money was fantastic, I worked for a great company but again, the work was taking over my life. I worked long hours on the road only to come home and spend a lot of the night preparing for the next day and doing all my own paperwork. After that job ended, I discovered that I crave the simple life.

People have told me over the years that I can achieve anything that I put my mind to. I felt that I was selling myself short wasting my life in hospitality and that I owed it to myself to go and get a real job. But after going out there and saving lives for a living or making a lot of money and having no time to spend it or enjoy it, I came to the realisation that I am a vocational type person. I want to work to live not live to work. I missed putting the chairs up at the end of the day and walking away from my job knowing that I did not have to think about it again until I walked back in the front door the next day.
So I went back to Marios’ for old times sake in 2010. After 5 years away I realised very quickly that I had missed hospitality and missed my old customers. Therefore, this time around, I was there because I wanted to be. I was really happy and was good at my job. I discovered that I love the simple things in life and appreciated the value in a simple job, done well, surrounded by good people.

I tell this story for two reasons. Firstly, I want to explain the environment that I was working in every day at the same time as I was riding the roller coaster of prenatal diagnoses. You see, I shared a lot of myself with a lot of different people every day. I would have similar conversations over and over again with different customers as they came in and chatted. I have never been a good liar. Some people can massage the truth or divert attention away from topics they don’t want to talk about. I’ve never been very good at that so I have always tried to be open and honest. That way I don’t have to remember which lie I told to which person on which day. I always tried to be a no bullshit kind of person and I think people appreciated that.

Secondly, when I began to look back on my experiences of the past couple years of adjusting to life as a parent of a child with a disability I noted that I was drawn to the honest simple life well before Wade was born. I don’t know if I was unwittingly preparing myself for the new life I would eventually have, or if it was just a beautiful coincidence that life with Wade would force me to appreciate the small quiet things in this world rather than chasing the biggest, best and brightest. I don’t know the answer to that but nothing makes me happier than taking the time to watch Wade work really hard to achieve a new milestone that other kids do without thinking and see his face shine with pride. By having no need to be the best and shiniest, I have space to sit with my beautiful child and watch patiently as he works out this crazy world.

Being pregnant in a job where the customers are like friends and there are many of them, meant discussing my pregnancy 15-20 times a day! After the results of the 12 week scan, I didn’t feel the need to discuss it with people because I really was in denial and didn’t believe that it would really happen. After the 20 week scan though, it was an entirely different matter.

I had received the call about my test results on a Wednesday afternoon and I wasn’t due to go back to work again until Saturday morning. I had two clear days to get my head right before work and after the first day I started to feel much better. Slowly but surely, all the reasons we had to be ok with raising a child with DS came bubbling back up to the surface. Nothing had changed.
I did, however, worry about discussing every aspect of this with all of my customers over and over every day. It felt like a private matter that we would deal with in house. I also wanted to be absolutely resolute about how I felt about it before I unleashed this new info on to the world.

So I decided to fake it. My first test run was on the lady who waxes my legs. I went to my appointment, she asked me how everything was going with the baby and I lied. It was easy. I changed the subject and that was that. Done. This is what I would do when I go back to work. I don’t need to share everything with everyone. This is private and private it will stay….

I had been back at work on the Saturday morning about 20minutes when a co-worker asked if was going to have a baby shower. My stomach sank, my throat tightened, my eyes welled and I ran to the bathroom in tears. So much for faking it.

After this I just took my time with who I told and how much. I told all my coworkers but I waited for a while until I told customers. Once I had it right in my head and clear in my mind why I had chosen the path I had, I felt ready to open up a bit to the wider world. The main reason I think was that, even though I was fairly open with my life at work, customers don’t really know me and I wanted to limit the amount of advice I received to people who either knew what they were talking about or knew me very well. This approach worked really well. It meant that I led from the front. By the time I spoke openly about it, I was happy and accepting of my position. It was well researched and well thought out so people had no choice but to be happy for me. With a bit a time, I realised I was setting out into my “new normal”. My life was never going to be the same again but it didn’t necessarily mean it was going to be bad. It was just going to be different. I was trading one set of difficulties for another.
The first time I tried on my “new normal” with a customer was with someone who usually keeps his cards close to his chest but has a child who has battled a life threatening illness for many years. We talked about how you just get on with it. About making the best decisions you can for your child at the time even if it means letting go of preconceived ideas of perfection you might have had about your child. It was liberating. It felt right. I didn’t speak about it all the time but if it was relevant and I felt close enough to the person, I spoke. If it wasn’t or I didn’t, I kept it to myself.

This little being inside of me was teaching me lessons everyday. Starting with how to be a better person.

A couple of weeks went by and I felt ready to reach out to Down Syndrome Victoria. Although I felt ok about it all, it still took some time to go and see them. The reality of the situation is always harder than the theory and the moment I realised I needed to speak to them, it got real all over again. Their head office is a few streets away from Marios’. I walked in, unannounced and asked for information. I spoke to Sue, the New Parent Coordinator who was amazing. She showed me their library of information resources and chatted to me about my circumstances and shared some stories. I left with a pile of books that I could look through, some dry and technical but also a beautiful book called Gifts. It’s a compilation of reflections written by mothers whose children have DS and how much their lives had been enriched as a result. It was a great contrast for me to go back to it and read a few positive stories when I needed a break from information about increased risk of heart defects, thyroid function and intellectual disability.

At the beginning of each story, there is a photo of the child. All of them beautiful but I was reading away, and I turned the page and looked at the photo of this little boy. He was about 4 or 5 with blonde hair and this look on his face!! I instantly burst into tears, happy hot tears. This child’s look was so wise and so content and so beautiful that my heart broke immediately. I didn’t know at the time that my baby was a boy. I didn’t know he would have blonde hair and I didn’t know that he would have those same thousand year old eyes. Coincidence? Maybe. Who knows, but it was the only photo that caused that feeling in me and it makes for a lovely story too.

I left DSV feeling as though I had been listened to, understood and welcomed into a new family. I had no idea how amazing that family is until after Wade was born.

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6 thoughts on “Part 4. The new normal

  1. You write beautifully Leticia and this post makes me proud to be included as one of the DSV family. Your story is moving and honest and real – thank you for sharing it. Wade is such a gorgeous baby and lucky to have you as his Mum.

  2. I thought the same thing when I opened your blog for the first time. I’m not just saying this either— “That baby is cute. Maybe my baby can be cute!”

    I dont cry, for whatever reason… I have a waterworks problem. I won’t cry for 5-10 years and then I’ll explode in heaves about something I’ve kept bottled. Then right back to bottling. I haven’t cried about this even yet. My wife cried as soon as she heard the 50/50 diagnosis. I keep waiting for it to happen. It would probably feel good. But nothing yet. Maybe nothing for a long time. Oh well.

    Getting late here… so I’ll read more soon, but time to get some sleep.

    Thanks again, I’m really enjoying reading your journey.

  3. Pingback: Happy Birthday little Blog! | Embracing Wade

  4. Pingback: Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome | Embracing Wade

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