The Day I Became a Carer

The Day I Became a Carer

At night when the sky is clear I love to look at the stars, I remember doing this as a child and thinking how big the world was. I now look at the stars and feel gratitude for my life and family. By the time my third child was born I thought I had a pretty good handle on what being a mother was all about. That changed one Sunday morning when I found my third child at 11 months of age in his cot. He was laying on his back, breathing heavily and his little body was convulsing like he was having a terrible nightmare. I just could not get him to wake up. This was the moment that my life as a mother changed forever.

The paramedics working on your son on the lounge room floor while you watch in a state of shock, the questions that you are unable to answer, “Did he swallow something?” “Did he have a fall and hit his head?” and the ambulance ride was a blur. The emergency room was full of medical staff all trying to get him to rouse. Asking me as mom to speak to him to get him to wake, but I was in a such a state of shock, I was unable to speak.

We were rushed for a CT scan to find out he had possible brain tumours, fluid on the brain, or cavernomas in his brain (a rare condition where blood vessels haemorrhage into the brain) these were the initial diagnosis, more would be found out after an MRI in two days. They pumped his little body with steroids and he began to come to. After the MRI we were told his diagnosis of – Cavernoma. We were sent home to wait and see. Then the appointments and clinics started. At his first neurologist appointment we were told to give him a good life, anything could happen at any time. I was devastated, distraught, we all were. It was two weeks before we saw another doctor who was more positive, but who completely played down the condition to my family members. I left that appointment feeling very confused.

Six weeks later he had another haemorrhage this time he was unable to crawl, his left arm and leg stopped working. This time they decided to operate. Wheeling my baby away into surgery was the worst experience of my life. Signing the medical papers that he may not make the surgery, that he may be disabled or brain damaged was terrifying. It was the longest day of our lives.  Six weeks later we would face it all again when they decided to operate on another Cavernoma. The memories of these hospitalisations still haunt me most days. There have been times when I have been covered in his blood because his cannula has blown, he has been treated like a pin cushion wrapped up in a sheet while four scary people (nurses and Drs he did not know) held him down to get blood, not from the ankle that I had told them had a good vein, but from both arms, wrists and then the original ankle that I suggested. The days seemed to roll into months and then run into years (almost seven years now since diagnosis) I feel like most of his young life was a blur of hospital appointments, worry, grief and stress.

The ongoing diagnoses and labels that continue from his bleeds are the other challenges we face, he was diagnosed with epilepsy (via a letter from the hospital, I might add, that day was an education and challenge!) cerebral palsy from the two strokes he had, sensory processing disorder, neuropathic pain and chronic leg pain, all from one condition called Cavernoma, many other conditions were born.

During these past years my mothering has taken on new skills and training. I am now a medical researcher. A medical educator, because whenever we present to emergency no one knows what a Cavernoma is, the paramedics in the ambulance have no idea what it is either. A carer, a pharmacist, and nurse as well as all the many varied roles that we take on as a mother and wife. You do begin to parent differently which then influences your other children, the siblings must take on more responsibility, they begin to complain about why they can’t eat like your child who has food sensitivities does and suddenly the once well-adjusted children eating all food groups become fussy, and now you are cooking three different meals a night. I don’t think I have had a night where I have slept soundly since diagnosis, or don’t have the worry if he is not in bed with me in the morning that what am I going to find in his bedroom. I don’t think that morning will ever leave me. Then there is the financial stress it had taken its toll initially until we were able to restructure ourselves. I can no longer work, I studied for 4 years for a degree, and worked my way up in an industry for 17 years successfully working in a career I loved that I have had to move on from. I tried to work from home, I tried to work for another company again after diagnosis, but it was unsuccessful. I couldn’t make it work with my sons needs or hospitalisations or clinics. It was a sacrifice I was willing to make because I could not give my son 100% which he needed and I couldn’t give my work 100% which they needed whilst there, it was hard, there were many days I cried and I had to seek help for the depression and grief that I felt from not being able to do what I wanted to do and for the post-traumatic stress and visuals from the hospitalisations and episodes of unwellness.

Having a child with a condition, or a family member with a mental illness or a disability is like being on call every hour of every day. Us parents have more layers to our parenting. We might have to go to hospital today, so we live in a state of disorganisation. We have pressures to make choices on medications, future surgeries, clinics and therapies. We have constant questions such as “Can I leave my child in someone else’s care?”, “Can he go to that party?” “Will he be able to play sports?” “Will he overheat in this weather?” “What if he falls and hits his head?” “Can he have a sleep over/ playdate at a friend’s place?” “Will he be able to drive?” “Will he cope with school today?” I constantly worry for the future but learning to be mindful every day is helping. There is a difference  being a mother of a child and being a carer of a child, I never realised this until recently. Right now, the only thing that matters is family time and holidays. Creating memories are important. At night when I count my stars, I feel a responsibility to also chase a cure:

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I want a cure for my own grief and to be able to let go of what I thought being a mother would be. I give myself permission to pave my own way, we all parent differently we just have different layers. I can’t be like any other mother because we all experience it differently. Some days we live minute by minute, some hour by hour.

I want a cure for my son because all children deserve a memorable childhood free of pain, with unlimited love and the ability to grow and be everything he will be.

For more information on Cavernoma’s please visit the Angioma Alliance in USA at www.angiomaalliance.com or the Cavernoma Alliance in the UK at www.cavernoma.org.uk consider making a donation to help fund research to find a cure. Currently (at the date of publication) there are no alliances in Australia researching Cavernoma.

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