Accepting the role of Carer

It has taken me years to accept and reconcile the title of ‘Carer’.  So many of its responsibilities and roles cross over that of ‘Mother’, yet somehow they hit different. The grief, the love, the dedication and the recovery. Each hat bringing something different, a different skill set and a new layer of emotion.

Carer covers so much of the extra stuff that we have to do on a daily basis.  The additional time spent physically caring for and tending to our boy, the organisation, the replenishing of medications, feeds and supplies, the transport to and from appointments, the organisation of appointments, the management of supports and funds, the keeping track of each little tweak, twinge and change that might occur – constantly running diagnostics and trying to work out what it means, why its happening and what our next steps are and if it needs attention or not. The Carer in me is practical and covers logistics, she puts on the brave face, stays calm, remains rational and can think straight when things go awry.

But the Mother in me? The mother is the one who shares a direct link to his soul – she knows well before any other when he needs help.  His pain is her pain – the connection we share runs deep but is instrumental to his advocacy, his care and ensuring he is provided with whatever is needed to allow him comfort and quality of life. She takes it one day at time never knowing what is in store – from joyful giggles to gasping for breath, from healing hugs to whimpering in pain.  It is the Mother in me that wears the trauma of watching her boy suffer on her sleeve.  That in the face of devastation and heartache is motivated enough to get up and keep going.  Yet, in turn it is the depth of her love that allows us to live in gratitude and love – to live each day to the fullest, ensuring we don’t lose sight of what is truly important, and remain fully present in the moment.

The last few months of being Christophers mum and carer have been really tough.  The hospital hangovers lingering longer along with the pain in my heart. There has been a whole bunch of tears, heartbreak, uncertainty and grief.  Our future is currently fluid and what we need to do to ensure his comfort level and our family’s quality of life remain high is constantly evolving.  The new baselines bring new challenges and new skill sets, new services and an extended team.  It is new levels and layers of complexities but somehow the carer in me has taken them on seamlessly and is managing – tirelessly treading water and keeping our head above the surface.

Upon reflection is it this life experience, growth and newfound comfort I now have within the role of ‘carer’ that has allowed me to truly acknowledge, treat and care for the ‘mother’.   It has given me the wisdom and clarity to see the trauma and hurt that she has carried for years, the maturity and understanding to allow her the time and space needed to process it and the kindness and grace to be lenient and patient with her as she heals.  My experience as a carer gives me strength as a mother, while my experience as a mother gives me resilience as a carer.

I cannot be one without the other. Knowing how they work together, care for one another and play to each others strengths ensures I am able to continue doing it all for myself, our boy and our family.  I have no idea what tomorrow will bring – all I can do is what I tell the other kids everyday.  ‘Have courage and be kind’.  For now, let’s hope that that’s enough.

Bio:

Pam, along with her husband Tom and their children – Christopher (7), Charlotte (5), Matilda (3), and Maxwell (3 months) – live in the ACT. Pam is passionate about supporting new mums and their mental health, particularly mums of children born with disability / additional needs and receiving diagnosis. She is also passionate about ensuring siblings get support too. Pam is actively involved with a number of groups around the ACT, to provide friendship, support and understanding to families in this space. A mum four times over, her eldest born with cCMV, she has a unique insight and knowledge of the multifaceted journey many families face.  Sharing their story, not only helps her heal but also allows her to help others.