Ask the expert: My baby has a disability – can we have a normal family life?
Q: I just found out my baby has cerebral palsy and I’m devastated to have to spend the rest of my life looking after her. Is there any hope my partner and I can live a normal life with our daughter?
A: Sera Johnston (serajohnston.com) is a health and mindset coach specializing 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 raising a child with cerebral palsy.
She says: “The simple answer is yes, you can live a normal life – with a few adjustments. Being told your child has cerebral palsy (CP) can make your whole world feel like it’s falling apart. range of mixed emotions and confusion surface, but it is important to know that this is completely normal. Likewise, the unknown of understanding what CP is, and how it will specifically affect your daughter, can be overwhelming and frightening.
“No child with the same CP diagnosis is the same. 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 l ‘affected.
“Reading, listening and trying to understand how life might be different can be confusing at first – allowing time to make sense of the diagnosis is vital. Communication between you and your partner is key, 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, seem foreign. Eventually these fill up your weekly schedule, so between you both decide how sharing appointments will work.Communication and planning are key.
“Your life will be different from what you have known or planned, but you can certainly live a normal life for yourself, without sacrificing or giving up things you loved before. You may need to plan ahead or maybe make adjustments to the way you used to do certain things.
“Creating a support network of family, friends, and groups that match your needs will give you support, help, and space that you can both use in times of need. need.
“Make time for each other as a couple and make time for yourself, take care of your own well-being. It’s non-negotiable. Don’t lose sight of your identity. It may take more planning, but it’s totally doable.
“Your destination is not what was intended. The loss of dreams and plans is very real, but your world has now opened up to new experiences, opportunities, new dreams and plans that would not have been part of your life.
“It’s such a positive and unique aspect that gives a different perspective to very special memories as a family that you haven’t yet discovered and created.”