As i wrote the words severe disability and complex care needs on a form my heart sank. As I write them now a lump forms in my throat. You are so much more than your disability darling, just as we are so much more than our weight, our insecurities, our scars, our jobs and others opinions of us. Your disability is fucked darling, but you are truly amazing.
Having a child with a disability is a strange thing, strange because you see the child, others see the disability. It was hard for me in the early days. Every single person that stared at my daughter I wanted to punch in the face. I was really angry. Angry at the world, angry at the doctors, angry at my exes. I know now that I needed that anger, that anger was the way out of despair and depression. One small step out of depression which led to many many other steps to wellness.
We all parent so differently, based on life experiences, personality type, mostly though we parent in the best way we know for each child. I know that I give 100% and sometimes I wish I could give more.
Chelsea was born on the 1st of October, 15 years ago. It was labour day long weekend. There wasn’t a Dr nearby, just the midwife. My Mum helped her to be born, they then formed a very special bond. That bond and my Mums eternal need to help her children made a significant difference later on. She took turns staying at the hospital with me during the 12 months of Chelseas slow recovery at the Women’s and Children’s hospital. I will always be greatful. Greatful to Dad too, who gave up his wife during that time to help his daughter. Do you get the vibe that family means everything to me yet?
Chelsea sustained a brain injury during the same accident that killed my son. She had a broken collarbone, a base of skull fracture and a cracked skull. Her will to live surpasses any other thing I have ever experienced. As soon as paramedics arrived she was whisked off to hospital. She was still conscious and according to a neighbour groaning. Horrific. Also amazing. She has always been a spirited child.
There has always been something different about Chelsea, compared to my other kids. I once explained to my psychiatrist that it was like the moment she was born I took a deep breath in and haven’t been able to exhale since. She was a whirlwind, intense, hilarious, strong willed. She was bloody hard work!! Do you have one of those kids? It’s these personality traits that have kept her alive. She’s made of tough stuff and is a fighter.
It’s often the awful things we remember people saying at tough times. One person who I won’t name told me “you’ll be up to your elbows in piss and shit for the rest of your life” ! Describing a life caring for my angel. How awful, he could only see my beautiful girl as a burden, hard work and a broken body. He wanted her to be placed in palliative care. He wanted her to die. Palliative care has an important role in our society, no one wants to suffer in their last days on earth. All other options need to be exhausted first, this is just my opinion. If I had listened to the ‘experts’ Chelsea would not be here now. Many specialists told me that my daughter was in a vegetative state and would die soon. I refused to give up. Even when she was in the palliative program, I still had hope. No one can take hope from you. No one.
A craniosplasty was performed, and pieces of broken skull removed. Unfortunately the procedure wasn’t performed quick enough, the swelling of the brain, caused a bleed in the brain stem. Most people who have brain stem injuries die. The brain stem controls all of our body functions, including breathing. I often asked different Doctors, social workers and psychiatrists if they knew anyone with a child with the exact injury as my child. I was always answered with “no, there is none”. There are adults, most of those adults are in the US. Chelseas closest diagnosis is “locked in syndrome”. Basically she’s a ‘normal’ bright, happy child in a fucked body. She can’t sit on her own, stand, feed herself, she can’t write, she can’t use a toilet or shower. She is 100% dependant on me and my husband for everything, or her special carers.
It was a very special day when I received a letter informing me that Chelsea had been discharged from the palliative care program at the WCH, the VERY FIRST CHILD EVER to be discharged from that program. AMAZING! She is my miracle.
Twelve months is a long time to live out of a bag, in a hospital, lights on all the time and machine noises. It’s a special kind of torture. A kind of torture I would go through again to guarantee I would bring my girl home. I’m sure I was no perfect guest either. In fact I was awful, I yelled at nurses. I yelled at managers, I yelled at Doctors. I was suffering extreme grief and clinging to thin hope that my daughter would somehow miraculously survive. I was so very frightened. To lose one child is hard, two well…I can imagine.
Sorry to those nurses, sorry to some of the doctors, sorry to every single person who I mistreated during that time. You do a tough job, which is often a thankless task. Thankyou to the special few who listened to me repeat my stories, who treated my daughter like a real person and not just a shell. Thankyou to those that kept me alive. There was times that those late night talks prevented me from losing my mind. Mostly.
Often the phrase “it takes a special person to do what you do” or “you’re a special person” comes up when getting to know knew people, even old friends have said this. It doesn’t take a special person to love your child. It takes a loving parent. I am a loving parent who would do what needs to be done for my children’s health and wellbeing. Having a child with a disability doesn’t make you special. It makes you a parent with a disabled child! I giggle when this kind of talk comes up. I think what you mean to say is ” I don’t think I would cope caring for a disabled child”. That is perfectly OK to say and think. Even though I am pretty sure most of you would absolutely cope.
Sometimes I describe how I felt 8 years ago as this. My two children who I loved with all my heart and soul were taken from me. Then they gave me a very different child to know and love. Luckily in time I learnt that the very essence of who we are doesn’t change because the shell changes. Chelsea is still very much her own person. She is hilarious. She is cheeky. She laughs at rude jokes and loves music with swearing. She thinks boys are cute and sometimes pretends not to understand when she can’t be bothered dealing with things.
She is never a burden, not for one second of one day. She is a blessing and every single day she is in our lives adds love and purpose. Don’t get me wrong, it’s not all sunshine and lolly pops, but what day is with any child? When she got a virus recently and had multiple trips to hospital it was a reminder of how her health is more important than anything.
Chelsea’s disability is life limiting. Is it likely that she will pass long before the rest of us. It is something I try not to dwell on or think about, I focus on the now. I focus on enjoying the days, weeks, years we have left with her. To think about a life without her breaks me. It’s not something I forget, but it can’t be what keeps me in pain.
My daughter has taught me patience. She has taught me to appreciate every single moment we are alive. She has taught me to always have hope. She has taught me to trust my gut instincts. I have learnt that experts make mistakes, that they are human. I have learnt that we all have a story. I have learnt that through adversity comes a strength that you can not imagine is within you. She has taught me kindness. She has taught me to love and appreciate my body for all it can do. She has taught me that there are a million ways to love and a million ways to communicate.
If we wake tomorrow, we have a roof over our head, if we have food and most of all if we have love there is nothing more that we need. We are truly blessed. I am truly greatful.
I am greatful for the pain, it has taught me compassion. I am greatful for the struggle it has taught me appreciation. I am greatful for all the men who have treated me poorly in my life, because without them I might not now appreciate the love that I have with my husband. I am greatful to be alive and well. My gratitude has no end.
The strength and gratitude I have isn’t an exclusive gift or club. You too can change your thoughts and behaviours, little by little. Choose one thing each day and say it out loud.I know life is tough, I do, but I also know a life filled with gratitude is a game changer. If you have children, play the gratitude game. When tucking them in at night, discuss the day. All the things that they loved. There is always, always something to be thankful for.