What I'd tell my younger self about the beauty in my child's Cerebral Palsy diagnosis
March 25th is National Cerebral Palsy Day. 4 years ago, I would not have known that. When my daughter was born in 2019, she was born 7 weeks premature. We had a traumatic birth and for several weeks we navigated the NICU.
After our NICU experience, we followed up with a NICU team to make sure that she was hitting appropriate milestones for her 'corrected age', and everything seemed typical. One day, in September 2021, when she was 18 months old, i heard the term "CEREBRAL PALSY" (CP) for the first time. She was diagnosed with SPASTIC DIPLEGIA CEREBRAL PALSY level 1-2.
I was, and I still am, a #singlemom with full custody to Presley and hearing that my child was physically disabled was not what I had ever predicted or expected in my motherhood journey. Being a single mom was something I never 'envisioned' either.
That day, I came home and I sat on the bathroom floor and I was very emotional. I was crying and feeling so sorry for myself. "Why is this happening to me?" I thought.... If I am being super tranparent, "why me?" I questioned what her life was going to look like... I was told that she will likely walk independly or with supports like a walker, splits/afos, cane... but I honestly was thinking, "what if she can't dance?" I danced my whole life. "What if she can't play like the other kids on the playground? What if she gets stared at for the way that she walks?"
I will be doing a post on our diagnosis story + will elaborate more on the above soon on my blog + instagram (@knotyourregularmom)
Being 'new' to the world of parenting and then to the world of disability (and then in 2022, the world of Neurodiversity with her future #autism diagnosis)... I would have looked at my younger self crying on the bathroom floor, searching #cerebralpalsy for hours to see individuals move and live in their disabled body and I would sit by her and say... "Paige, you are allowed to feel all of these emotions. This is scary because it is all new and unknown. Becoming a parent has been the most beautiful, paradox experience of you life before and this diagnosis is going to shift your perspective on life in ways you never imagined. In a few years, you are going to celebrate your daughter's abilities in her disabled body and you are going to explore the world through a different lens with her neurodivergent mind. You are going to start shifting your thinking to "why not me?" ... "Why shouldn't I experience this journey of parenting?" "Why shouldn't by daughter be disabled?" I would tell younger me that my child's body is perfect as is, and that the real shift isn't her needing to move or think or be a certain way, but the way that the world sees disabilities and neurodiversity needs to shift.
Id tell my younger self that even though some days you may feel exhausted by ableist words or phrases, inaccessibility you didn't recognize before and feel frustrated with having to open up and educate the knowledge that you are learning so others are aware, that that is not a bad thing. The reality is, the version of Paige just receiving the CP diagnosis, has lived her whole life unaware and ableist. The journey of parenting your daughter will enlighten you, make you softer and yet, give you confidence to use your voice and platform to educate and share your journey because your whole life, you did not see or learn about disabilities. I'd tell her that she is going to see the beauty in the way that our life will unfold because of this experience and this diagnosis is going to shift the whole trajectory of her life and the people she spends time with. I would tell her that the NICU experience, as hard as it was, gave me a different level of connection to other families. The NICU journey gave me the beautiful experience of creating a resource, "ME, YOU, AND THE NICU", my children's book, something I needed in the NICU and did not have for other families to have and feel heard and seen. I would tell her that this CP experience is just another surprise she will learn to navigate and it doesn't mean that it is going to be a 'bad experience', it will just be 'a experience'.
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