My new real-life heroes who inspire me everyday

By Heather Cox

Before this trip to “Holland”, I used to look up to certain people, perhaps those in the media for generous deeds or certain people in the public arena. But when you are thrown into this world of special needs parenting and high care kids your world view changes pretty fast… I now have completely different heroes in my life. The following are all real people who inspire me every day to be a better mum and person.

• The mum who gets up all through the night to re-position and suction her boy with severe cerebral palsy; whose morning consists of administering several tubes with food and medication.
• The mum who tirelessly fights for her child’s development, trying every therapy from the conventional to unconventional driven only by love.
• The mum who chooses to give up her career to home school her children on the spectrum as she feels that the current system is not giving her children what they need.
• The child who endures so many operations and so much pain, but continues to smile through it all.
• The child without legs who learns to climb around the playground and the mum who has the strength to leave him to figure it out.
• The adult with facial difference who puts herself out there, advocating every day to make the world a kinder place for young kids growing up with differences.
• The mum who had to re-adjust to life with a chronic condition who works so hard just to get to her children’s school events or drop them off each day.
• The adult with CP who finishes a marathon showing others to never give up dreaming.
• The dad who comes home from work and rather than relaxing, instead helps his wife with their child with multiple complex needs so she can get a short break from her day long caring role.
• The parents who’ve had to say goodbye to their child too soon and who have, during their grief, donated their child’s organs to save another.
• The parent whose child has very complex needs and through her own grief and pain, finds her joy each day and starts a community to help others who are on a similar path.
• The parents with limited free time of their own who run social media community groups to support others on a similar journey.
• The parent of an adult with special needs who, rather than enjoying the empty nest time with cruises and the like, spends their time supporting their adult child who is unable to live and independent life.
• The mums of children with high care needs who are on seizure watch 24/7, worried about every cough and cold, and spend a lot of time in hospital.
• The mums who reached out to me early on the journey, letting me know that even though everything was not alright, I would find a new ‘alright’ and that they were there for me as I adjusted to this new life.
• The many, many children who with their parents love and their determination, despite the odds, defy early predictions of their outcomes and come so far, including my own daughter who is my favourite hero of all.

About Heather and Arianna

Heather is mum to two girls, Erica, who has developed typically and Arianna, whose journey will be different. Heather writes a blog and has a FB page called Arianna’s Army which she uses to share her journey, educate and raise awareness and as an outlet for her own feelings.

Arianna is currently undiagnosed but has an overgrowth condition, is developmentally delayed, tube fed, non-verbal and has spent much of her first year of life in hospital. She is progressing, albeit slowly.