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A PARENT’S LOVE – LOVING SOMEONE WITH ADDITIONAL NEEDS

Being a parent is a complex gig. It is overwhelmingly wonderful much of the time but if you ask most parents there are times of worry, tiredness and sometimes heartache at seeing their child’s life not turn out as they’d hoped. Parenting a child with additional needs or an acquired injury adds another depth to these emotions but the one thing that doesn’t change is the love a parent feels for their child.

Enjoy reading the following stories. Each person has had a different experience but the love they feel for their child or the child in their care shines through.

ARA-JANE’S STORY

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I nearly didn’t get to be a mum. So I never take a day for granted with my daughter Keeley. At 33weeks pregnant we were told our daughter had suffered a major stroke inutero. Their exact words were “she’s not compatible with the outside world, you’re only thing keeping her alive. You should think about making arrangements.” Keeley is now nearly 5years old. She has major brain damage, Cerebral Palsy, epilepsy, low vision, hydrocephalus, SPD. But to look at her wouldn’t know. The love I have for her is powerful, unwavering, patient and most of all unconditional. Watching our first born struggle to do what comes naturally to us like sitting, eating and walking is painful and heartbreaking. But after hours and hours of therapies per week she can now do it all and there is not stopping her. She amazes me every day and I am truly thankfully that I get to be her mum and spend the rest of my life with her. No words she speaks with ever be taken for granted and no steps she takes will ever be lost from my memory. My daughter is my hero.

SUE’S STORY

Sues

My daughter loves water, music, dancing and staring at the ocean. So do I. Does she love these things because I do or because I shared my love for those things with her? Does it matter what we love or why we love? No. It only matters that we love unconditionally.

HEIDZ MUM –

Heidz

As Heidz was recovering in hospital from her crash, I was learning that the nature of her specific spinal cord injury meant she could achieve true independence. In the early days of recovery I had to do everything for Heidz. It would have been easy to slip into a life time carer role and do everything to make it ‘easy’ for her. But I felt the most loving thing I could do for her was to help her achieve that independence. So that meant recognizing her gradual achievements and stepping further and further back as her independence grew.

Heidz shared a guest blog about her accident and travels which you can read here. 

CARA’S STORY

LylaYour love for your children is unconditional, that’s a given. I’ll admit to not liking my children all the time, especially at uneaten mealtimes and never ending bedtimes, but the love is overwhelming, constant and unwavering. When Lyla was 8 months old she was diagnosed with quadriplegic cerebral palsy due to a rare brain disorder. After this news, which was a total and utter shock, the love I felt for her only grew more fierce, more consuming and more painful. I was overcome by the feelings of sadness, anger and fear for her future and how unfair it all was, I could barely think about it without crying. But my girl is like me, she is fierce and feisty and strong willed. She shows me constantly how she is more than her disability and her personality is so vibrant and open that people are attracted to her instantly, usually because she won’t stop looking at you and smiling at you until you acknowledge her and smile back. Lyla is now 3 and although she may not be able to ‘toddle’, she has the true spirit of a toddler, she challenges me and pushes my buttons and I love her more for it every day, She is a girl of few words but if you listen carefully two of those words are ‘love you’, she loves so hard that she dissolves into tears when her brother leaves for school and when the rest of the family heads into the kitchen to eat dinner and she thinks she is being left behind. She craves love and inclusion and in return she will love you harder than you thought possible.

BRUCE’S STORY

Bruce
Photo credit Quest Community Newspaper. Bruce and his nephew.

As a sole male carer of to my 4 year old nephew with multiple disabilities there are many challenges and although not that much different from those faced by other families. What makes it all worthwhile is the smiles, laughter and absolute joy from my nephew in his experience of the simple things such as enjoying a swim at the local pool, making music together or sharing some cuddles and tickles after bath time. Regardless of the challenges we both face our small unique family unit shares a bond and love that is not like any other; it’s a delight, privilege and honour to be supporting and assisting him on his journey through life.

PHY’S STORY

Phys
Phy and her boys.

Lucas has the brightest smile and most infectious laughter. He is our amazing survivor and fighter who just turned 4 years old. He has a big brother who’s 6, the only difference is one can walk and talk and one can’t. This lil’ man has brightened up our lives so much we couldn’t imagine our lives without him.

ANONYMOUS

As the parent of a quadriplegic son who is trapped in a newborn body, cannot eat and will not walk or talk, I often here ” oh that must be so hard for you, and how do you cope?” Love is irrespective of what a person can do or what a person can express. Love fills each and every day and my heart feels like it will explode just looking at my son and the love I feel. He makes my heart soar and makes me so so proud and despite all the challenges and appointments, there is a massive love exuding from every second of every day. The one thing I CAN guarantee my son has in his life is LOVE! And this is what I will always continue to give him endlessly.

JUNE’S STORY

June

What is love?

It’s being told when your child is three months old that her head isn’t growing therefore she won’t be “normal”. Spending countless sleepless nights and weeks in hospital with your child when unwell or having surgery. Being unable to lift your head up with the heartache and worry when your child is near deaths door with uncontrollable seizures. Watching her sibling doing things that you know she will never achieve or experience. The joy of seeing her hold her bottle or cup and trying to drink by herself. My excitement when she pushed her arms through her sleeves when dressing her. Seeing the pleasure she gets from spa pool sessions. Knowing its up to you to ensure she gets a good a life as possible. And even with all of her disabilities – I would sooner have her as she is than not at all .

SHELLEY’S STORY

Shelley

As a parent you expect to love your child. The intensity and absolute nature of such love wasn’t surprising in theory but I feel had to be experienced to be truly believed. To keep loving my girl through the terror of doctors concerned looks, so many tests and then a diagnosis took a new level of fierce. Loving her with a sad heart as staring eyes judge her always brings out my mumma bear claws. I have great love and respect and pride for her gentle, funny, protective brother as he continually steps up to the sibling plate. I didn’t plan for this extra layer of challenges and love for my kids but this is our life and so we live it to the best of our ability. The big surprise? Her love for me. It took many months for her eyes to look at me instead of through me. And years longer for her little arm to purposefully lift and draw me into a hug. Though her body can be uncooperative her love shines from her cheeky eyes. She astounds me. Her tolerance when she has to have a blood test, her forgiveness of my tired grumpiness and her understanding of other peoples attitude toward her all belie her young age. I am stunned at her complete trust in me and by her lack of blame. That is my surprise. That is love!

Thanks to everyone who contributed to this post. I felt privileged to share in your stories.

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Ara-Jane

 

 




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