The real-life checklist I was forced to make after my child had a hospital diagnosis

In 2013 I waddled, 9 months pregnant and in labour, into the local maternity hospital ready to soon meet my little boy.

I was sore, tired and a little overwhelmed, but not fearful. This was my second child and I’d been here before. I was looking forward to starting the next phase of my life, and becoming a mother of two when I brought him home from hospital in a few hours.

Those plans changed rapidly when my newborn son Parker was diagnosed at birth; both with Down syndrome, a heart condition called a PDA, and a secondary condition of neonatal pulmonary hypertension (pressure on his tiny newborn lungs).

Thankfully, his heart resolved itself very quickly and he was cleared of any other major health issues beyond a pesky extra chromosome. I took my little boy home at 2 months old, where he would stay on oxygen for 16 months while I fretted, planned and re-engineered our lives while I worried for the future.

After having him, nurses and social workers gave advice like,

‘Just go home and enjoy your baby.’

‘Most children with this condition will be just fine, and your family will adjust.’

But when it comes to the practical stuff, I often found their advice sorely lacking. There was SO much to do. As a single mother who already had a family, I was now unable to return to work when expected.

And I received a crash course into the hospital system, soon realising the real world still awaited me, unchanging, post diagnosis.

I returned home from hospital for the first time, leaving my son behind in a hospital crib… only to burst into tears when I pulled up, realising my entire home looked abandoned.

With no one there to empty the trash, my kitchen smelt awful.

Weeds grew across my lawn, the yard neglected for over a month. A window had been left open in the nursery to air it out before he came home, the rain ruining the curtain and his new stuffed toys perched on a shelf below the window.

I slowly cleaned up my home, threw the toys in the trash, and replaced them with a beautiful little bear I had been gifted from the local Down syndrome association of Queensland. I arranged for someone to mow the lawns, and asked a friend to help me clean and air out my home.

Then I sat down with a pen and paper, and for the first time I took a deep breath and made an action plan. I was ready to start taking control back, as best I could with the tools I had. I wish I had been aware of the NAB Life Moment’s hub back then, to help me deal with my finances better in the situation I was in. Although, I think I did an alright job creating my own checklist!

Here’s some of the most important actions I took over the next few months.

I immediately connected with the organisation who supports my child’s diagnosis. It can be painful to face the reality of your new world, but these organisations exist for a reason. They know things you don’t, about what’s in the future for you. By proactively connecting to this community, I had a default point of contact to reach out to.

I did a full evaluation of my current finances. I tallied up my debts, my weekly income (factoring in my paid parental leave.) This allowed me to clearly see I could breathe comfortably and cover our basics for 8 months until my maternity leave ran out, and allowed me the space to move on and address the bigger stuff. Planning for the unexpected is something not a lot of people do until they fall into financial hardship. Having a checklist in place will help you with managing expenses when the unexpected life events happen.

I reached out to find others like me. I did a Google search, found blogs, read the comments sections, connected to the authors and communities on Facebook and Instagram, joined mailing lists, and found the best Facebook groups on the planet. This changed my entire playing field – now I had a community to support, and be supported by. I was initially anxious and worried about what was out there waiting for me, but grateful I reached out as quickly as I did.

I made an appointment with my bank manager for a financial health check. Josh did a full accounts and products review, consolidated my car loan and moved me to a more favourable rate, then switched my credit cards to reduce the interest rate. I was given the advice to attend in person, and I’m so glad I did- it was an almost 3-hour appointment, but when I left there was nothing more to be done. It was a huge relief and weight off my mind, knowing that my finances were in the best shape they could be. He went on to help me again twice more annually.

I found out what I was eligible for. I searched through government websites, blogs and Facebook groups, as well as asking hospital social workers and tapping into parent support groups. Without these parent support groups, I never would have realised I WAS eligible for tax free government assistance designed to support carers- I’d been told previously I wouldn’t be.

I had a conversation with my employer. I stayed in touch and made sure my details were up to date, and I stayed in contact frequently around my return date to work.

For the first time in my life, I made my personal mental health and mindset a number one priority. With the guidance of an incredibly skilled counsellor called Jenny, I developed daily routines and practices to lessen my anxiety and help support my emotions. I used an app called Headspace for quick guided meditations and discovered natural herbal remedies at the chemist which calmed and supported me emotionally. I diffused lovely smelling essential oils around my home to help anchor those special, stress-free moments that would happen as a family, then diffuse them again later as an instant pick-me-up.

I reviewed my insurance policies. I rang the company and discovered I hadn’t updated my car insurance since I moved, and this meant I was saving hundreds a year on the new policy.

I took my power back. Having a child diagnosed with a medical condition or illness is hands down one of the most traumatic things that could happen in a parents’ lifetime. Making lists and slowly learning people out there COULD help and support my family, if I just knew who and where to ask, was an incredibly empowering experience.

Having my checklist and planning the next steps gave me the peace of mind I needed.

And that social worker was right.

I went home, and I enjoyed my baby.

This article is a NAB paid promotion and was written in collaboration with NAB.

Click here to add a comment

Leave a comment: