Monday 20th September 2021

Women of Courage Series. #68 Gloria Hill. 101/2021.

Women of Courage Series. #68 Gloria Hill. 101/2021.

Two years ago….around this time of year, I tentatively courageously launched Women of Courage series on my blog and here was what I said then:

I got this idea from attending the Newcastle Writers Festival in April 2019 and hearing the wonderful Jane Caro speak about her book Accidental Feminists. IF you ever get a chance to listen to or read Jane’s works they are very good.

What I considered after that day and in the days to come is how we women have a tendency to underplay our achievements and whatever else we are doing in our lives. I know this is changing.

This third series of blog posts on Denyse Whelan Blogs to be found here will continue to be published each Thursday.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda

 

I may not have (yet) met Gloria Hill, aged 48, but I already am very aware of her role and input as a parent into the very newest public school which opened in 2019. This is North Kellyville Public School, and I am a proud retired principal who continues to support public education in N.S.W. Our daughter is the teacher/librarian there, becoming foundation year staff member, and I recall seeing the many positive and amazing projects which the foundation year Parents and Citizens group (P&C) initiated. To that end, Gloria, as the 2019 P&C Secretary and later as the 2020 P&C President was nominated for the 2020 NSW P&C Federation Volunteer of the Year Award, and was one of 16 Finalists after winning the North West Sydney Electorate. Thank you Gloria for sharing your story with us. At the foot of this post is information from Gloria.

 

What have you faced in your life where you have had to be courageous?

In 2012, my son Sean was diagnosed with a genetic disease at the age of 12 months.

  • The disease is called Severe Combined Immunodeficiency (SCID) and people born with this disease are effectively born without an immune system.
  • Most undiagnosed cases do not survive infancy.
  • I was not aware I was a carrier of this glitchy gene, nor that I had passed it on to my son.

As a first-time mum, I did not know why my little man would take weeks to get over a cold, or why a small nappy rash would leave his entire bottom a red raw open weeping wound for days on end.

That first year was spent advocating for my son with various medical professionals – we got to know our GP and our early childhood nurses very well, to the point where one medical professional noted the frequency with which we were visiting the doctors’ surgery and flippantly told us we should be earning frequent flyer points for all of our visits.

For his many ailments, Sean was prescribed every potion and lotion available from our local pharmacy, but there would still be extended periods of ill health between the bright and happy days.

After many months of bashing down the doors of various doctors, a chance meeting with an early childhood nurse fast tracked the diagnosis when she insisted that Sean be seen by a paediatrician immediately.

  • In the space of 2 hours, we went from being just a number in a queue to Patient #1 at the Sydney Children’s Hospital Randwick.
  • The diagnosis came quickly, and the treatment plan followed – we would have to consent to chemotherapy and a bone marrow/stem cells transplant to save Sean’s life.
  •  He was 13 months old, my first and only child, and my husband and I sat through all the medical scenarios and diseases Sean may develop post transplant, all of the scenarios ended with “if this disease developed, then Sean may die”.
  • The bone crunching, soul destroying scenario was presented last – if we did not consent to the transplant, then Sean will die.

 

On 27 March 2012, a specialist team performed a miracle by transfusing 30mL of precious stem cells into Sean’s little body.

  • Over the next 5 weeks, we watched Sean’s condition worsen before he got better.
  • In a comparatively short period of time time, Sean’s body recovered from the treatments as the stem cells grafted in his body and he grew stronger by the day.
  • We were discharged from the hospital in May 2012 when the real fun awaited: a lengthy period of self-isolation with an inquisitive toddler quarantined in a small house while trying to manage weekly hospital check ups, the complicated medication schedule, the new diet (both liquid and solid), and the upkeep of his medical accessories (nasogastric tube and central line) tested my patience.

 

By the end of 2012, all the hard work paid off.

Sean was weaned off all medication, and all of his medical accessories were removed.  Sean’s appetite returned and he was thriving again hitting all of the growth milestones with ease.  The weekly clinics at hospital turned into monthly visits, and by the end of 2013, the visits would become an annual check up.

Today, 9 years since the transplant, Sean is a healthy 10 year old who loves to swim, ride his bike, and read, with a healthy appetite and an even brighter outlook on life.

 

How did this change you in any way? Please outline further if this has been the case.

I learned to trust my gut instincts and not back down, especially when I am advocating for my family and my loved ones.

I learned to look for silver linings, because the alternative was too sad.

I learned to show my vulnerability and accept help in all the different ways that were offered to us.

I learned to take a deep breath and push on – sometimes, it just IS what it is, and I have to get on with it, because there is no other option available.

 

Is there something you learned from this that you could recommend to help others who need courage?

Lean on those you trust.

Some friendships will grow and transform to the next level.

Expect to lose friends and see friendships shift – you may be surprised by who “slip away” and bow out of your life, but don’t begrudge their departure.

They are not bad people; they just don’t know how to support you.

You are not alone.

AND you don’t have to do this alone.

There is help and support available, everywhere.

Never be afraid to reach out for help.

And if help comes to you, accept it.

You are not weaker by seeking or accepting help – in fact, you are the stronger and more courageous one for seeking or accepting help.

Specifically to a medical condition: listen to the professionals – if they tell you not to Google the disease, then don’t Google the disease, especially at 3am when you can’t sleep.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I don’t think I could be more courageous now than I was then.

In 2012, just after diagnosis, we found ourselves “shedding friends” – people who called to check in on us, but then picked fights with us over trivial matters.

The drama that some of these former friends created at the time distracted us from the real focus at hand – the life and health of our critically ill little boy.

In hindsight, I came to realise that these people may not have been strong enough to support us, nor knew how to support, nor knew how to react to the news.

Whilst it was disappointing at the time, the loss of these relationships was actually to our benefit.

At the same time, our true friends stepped up and found innovative ways to support us.

Financial donations flooded in from well meaning friends who wanted to make sure my husband and I were fed during our hospital stay and we had money for petrol to get to and from the hospital.

Friends cooked us meals, took us out for quick meals (just so we would leave the hospital room and get some fresh air), and called and messaged us to get up to date news on Sean.

We still have the same loving network of family and friends who rallied around me then, so if I had to face the situation now, I know I have the support and love to get through it.

 

Is there any message you would give to others facing a situation where courage could be needed?

You are not alone.

You don’t have to do this alone.

And asking for help is not a failure.

To ask for help is a sign of strength, so reach out to family and friends, and lean on them.

 

Thank you Gloria. I feel it is such an hnour for people like, and all the women who decide to share their stories, that this is a place here on my blog to do so. I am in awe of your strength as you were learning to be a mum too. I do hope all continues to go well for you and your family.

Denyse.

 

Social Media:

Twitter: https://twitter.com/Oh_Glorious_One

Instagram:  https://www.instagram.com/oh_glorious_one/

Information supplied by Gloria which I am very pleased to be able to share…awareness is always an important factor in any health conditions. Thank you.

Since Sean’s diagnosis, I have discovered the Immune Deficiency Foundation Australia’s Facebook page (https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/) and their private group (https://www.facebook.com/groups/217875418231666).  IDFA have provided a fantastic platform for people with Primary Immune Diseases to share knowledge and information and to provide support to each other.
As a point of interest – if anyone is keen to find out more about our involvement with Inner Wheel Australia.  The treatment plan devised by our Oncology and Immunology teams at the Sydney Children’s Hospital involved a stem cell transplant.  Sean received the transplant using stem cells extracted from cord blood, and in the ensuing years, we have been involved with Inner Wheel Australia as Ambassadors for their National Project in Cord Blood Research (https://www.innerwheelaustralia.org.au/national-project).  I have been a keynote speaker at various conferences, and Sean is the face of their national fundraising campaign called “Sean’s Two For Ten”.  The annual campaign was launched this year, and we have agreed to be the face of the campaign for the next 6 years (until Sean is 16).

 

Joining with Natalie here for Weekend Coffee Share.

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