March is Cerebral Palsy Awareness Month. A year ago I would not have even known that Cerebral Palsy has a whole month for awareness. Today I know better, because I am a Cerebral Palsy mom. My daughter is almost 3 years old. At 20months, after an MRI in South Africa, we got a CP Diagnosis.
What is Cerebral Palsy
Cerebral Palsy (CP) is the most common childhood disability.It is a neurological disorder that affects a child’s motor skills, movements, and muscle tone. Brain injury is the underlying cause. The damage may occur while the baby is still in utero, during labor and delivery, or shortly after birth.
Getting a Diagnosis
A CP diagnosis can be determined by a Brain MRI or CT Scan. We got our CP diagnosis almost a year ago. My daughter was 20 months. I was expecting it, but my heart was still unprepared… it shattered into a million pieces. ‘How would the world accept my baby girl?’ ‘How would she cope?’ I knew from that point, even after all we had already overcome, that the journey ahead was going to be long and hard, with very high high’s and very low lows.
After you get a diagnosis, you go through so many emotions, at different stages. This is how the diagnosis impacted me:
‘Maybe the MRI was wrong!’ ‘Maybe we did the MRI when she was still young’. ‘Her brain will heal in time’… your heart needs a little time to catch up to what your brain already knows. And it eventually does and with that comes the next stage:
This comes in waves…. Somedays so strong that I feared I wouldn’t recover. A lady I met on my journey with a special needs son, once told me “it’s okay to grieve!”. We are allowed to be sad and grieve the expectation of child we would never have. The expectation of the child we hoped for, because now things had changed and some of our hopes and dreams for our child may never come to fruition.
Grieving is part of the journey to acceptance. Our family had to feel the feelings and then release it. Grief never goes away completely, the waves subside and you manage it better. On the hard days, it can come back and knock you off your feet, small things would trigger me … seeing a small child running around would almost bring me to my knees… but it gets better with time and you learn to control the emotion
‘Why did this happen to me?’ ‘I’m not a bad person. Why did this have to happen to my daughter?’ My family put up with a lot of my anger and negativity towards this situation. I read a quote which said “I sat with my grief long enough, until she told me her name was anger”. It made me realise that this was the next step from grief.
If you are a parent, you battle with this one al ot. As a special needs parent, I spent a lot of time asking the “what ifs”… ‘What if I went to the hospital sooner?’ ‘What if I ate better, rested more?’…. It would keep me awake at night replaying every moment up to and after her birth.
Then, there’s the guilt that comes with managing her diagnosis. She needs to wear braces (AFOs) 6 hours a day, she needs to wear an eye patch 1 hour a day, physio 4 times a week, knee immobiliser’s every night for 8 hours while she sleeps, medication 3 times a day, swimming 1 hour a day… and so on… I can say most nights I still go to bed, not having completed enough hours on one thing or left out another thing and the guilt burns into my soul.
Reading other special needs moms’ stories has helped ease the guilt, it reminds me, I’m not alone and there are other moms also not managing to squeeze it all into one day. This is life, some days are messy and complicated… and things don’t go according to plan and that’s completely OK. Tomorrow is another day.
This one crept up on me, I tried to hide it for a long time. I was so grateful my little girl was alive and with us, especially when her prognosis had been so bad. ‘So why was I sad?’ I felt like crying all the time. I would go shower and just cry until I felt better enough to face the world.
I thought I had it under control until my son asked me why I was sad all the time… I was trying so hard to hold it in, I didn’t realise it was seeping out my pores. I decided to actively seek help and talking to moms in similar situations really helped me through this… and once I had overcome this I could finally face acceptance.
Acceptance is the reason I am writing this blog today. A year ago I would never have thought I would be advocating and trying to bring awareness to CP, only once I had accepted my situation and counted my many, many blessing my little girl brings to me every day did it lead me to this. This is our new normal, instead of joining a playgroup, we do Physiotherapy, instead of a ballet class, we attempt horse riding to help with her core strength… we have grown into our routine and it is working for our family.
I am able to say I have healed enough to be able to reach out to other parents who are going through similar situations. You are not alone, I know your daily struggles and I get it. I see you.
I want to prepare my daughter for the world, so we try everything in our power, financially, physically and emotionally for her to be the best she can be. She had been for operations, procedures and therapies and we will continue to try and provide her with all she needs. I also want to prepare the world for her… She is Fire! She is Strong,Funny and Loving. She is not defined by her diagnosis. Diagnosis can add weight to stigma.
People with CP are still perceived to be abnormal, their disability is seen as a sign of weakness, and they are regarded with fear, pity and expectations of mediocrity. In some African countries it is even seen as witchcraft and disabled people are shunned and abandoned.
Let us join together to teach our children, friends and family about CP. Disability does not mean inability! Let us teach empathy, with knowledge comes understanding. May we as parents always teach our children that different is beautiful, to embrace uniqueness and that special needs kids are not disabled, they are just differently-abled.
For further reading on Cerebral Palsy go to:
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What incredible strength you have Carly. I admire you and your family- your children are so blessed to have such amazing parents!
Wow, beautiful, honest & touching story. Had me in tears reading it. I salute you Carly, you are one Phenomenal mum.