My baby has a disability – how will this affect our family life and how do we adjust?
I’ve just found out my baby’s got cerebral palsy and I’m devastated that I’ll probably have to spend the rest of my life caring for her. Is there any hope that my partner and I can lead a normal life with our daughter?
Sera Johnston https://serajohnston.com is a health and mindset coach who specialises in supporting parents of children with cerebral palsy and other disabilities, and author of Dana’s Walk (£10.99, Ecademy Press), a book where she describes her own experience of bringing up a child with cerebral palsy.
She says: “The simple answer is yes, you can lead a normal life – with a few adjustments. Being told your child has cerebral palsy (CP) can feel like your whole world has come crashing down. A range of mixed emotions and confusion surface, yet it’s important to know this is completely normal. Equally, the unknown of understanding what CP is, and how this will affect your daughter specifically, can be overwhelming and scary.
“No two children with the same CP diagnosis are identical. It’s human nature to compare and search for answers, but it’s important to focus on your daughter’s specific diagnosis, and understand how CP affects her.
“Reading, listening and attempting to understand how life may be different can initially be confusing – allowing yourself time to make sense of the diagnosis is vital. Communication between yourself and your partner is critical, allowing each other to be open and honest about your thoughts.
“Of course there are logistical elements in terms of therapies, hospital appointments and conversations with medical terminology that at first feels alien. Eventually these fill your weekly calendar so between you, both decide how sharing appointments will work. Communication and planning is key.
“Your life will be different from the one you knew or planned, yet you can certainly lead a life normal to you, not sacrificing or giving up things you enjoyed previously. You may need to plan ahead or perhaps make adjustments to how you used to do certain things.
“Creating a support network of family, friends and groups matching your needs will give you support, help and space for you both to use when needed.
“Make time for each other as a couple and make time for yourself, look after your own wellbeing. This is non-negotiable. Don’t lose sight of your identity. It might take more planning, yet is completely achievable.
“Your destination isn’t what was planned. The loss of dreams and plans are very real yet your world has now been opened up to new experiences, opportunities, new dreams and plans that wouldn’t have been part of your life.
“This is such a positive and unique aspect that gives a different perspective to the very special memories as a family you are yet to discover and make.”
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