Take one day at a time.

Nuala and Erin

Today I talked to Nuala, who is married to Steve, about their daughter Erin. Erin is 3, soon to turn 4, years old. She is a very happy, feisty, clever little girl who loves to be with her family and friends. Erin has quadriplegic cerebral palsy so all four limbs and her face are affected; she is non-verbal and unable to walk. Recently she was diagnosed with epilepsy. Erin is cognitively able and very capable of understanding what is going on around her, something which people often misunderstand.

Tell me about Erin’s diagnosis of cerebral palsy.

Following a difficult labour Erin was born not breathing. She was immediately taken to NICU and I underwent surgery. Four hours later when I came round I was told, in a very direct and matter of fact way, that because of the oxygen deprivation Erin had suffered, she was highly likely to have cerebral palsy. As time progressed we could see her development was not typical, so when she was diagnosed at 12 months old it was almost anticlimactic. The diagnosis meant we were able to access support which was a very positive thing.

What were your feelings in the first 12 months, when you did not know what the future would hold?

We had worries for Erin, as every parent does for their child. I struggled in the first year with the unfairness of the situation. It wasn’t like all the books said it should be. How had this happened? I felt anger and upset, and was grieving for the situation not being how I had expected it to be.

But we don’t know any different, we haven’t experienced parenting a child without additional needs. It is normal now for us to do 90 minutes of physiotherapy every day and so we have accepted this new normal and we get on with it.

Can you describe help and support you have had that has been beneficial?

My husband has been an important source of help and support. Because we are going through this situation together, he understands it and we can share our worries. We have different ways of dealing with things but we talk about it and find ways to move forward together. My family have also been incredible at providing emotional support and practical help too.

There is also a team of professionals who provide support. Building the right team is a process. It is important that you like and respect the professionals who work with your child and know they are fighting for them. You need to get the best possible team around you child and you can request to see someone else if it isn’t working. You know your child best, so trust your gut and get the support they need. When Erin was 3 weeks old we were told she would be tube fed forever but I didn’t feel like this was the right thing for her so we pushed to try the bottle, she learned to breastfeed and now she feeds by mouth.

What advice would you give to another parent who is in the early stages of this journey?

Take one day at a time. You will try and anticipate the future, but you don’t know what is going to happen. Children change so much and you will drive yourself crazy trying to think too far ahead. Focus on the here and now. Invest your energy in fighting for your child and the support they need.

Tell me about Erin’s speech and language.

Speech is out biggest goal now, more of a priority than walking. She wants to be involved with the conversation and she has so much to say.

I hadn’t realised cerebral palsy would affect her speech. When she was a few days old she still hadn’t made a sound and the specialist told me she could be mute, which shocked me. The next day when she cried I was so pleased.

I want her to be able to communicate what she wants but it is a struggle. Currently she can use around 20 words, not on demand, but sometimes when she wants too. Her yes and no are very clear. Other words are sometimes clear, often we need to ask to confirm what she means.

She is really good at eye gaze and so when you spend a lot of time with her you can understand her now with this. She started using eye gaze technology 18 months ago and she can use it tell us what she is thinking, for example, what she wants for breakfast when we present her with a choice. She uses it in pre-school now to help them understand her. It has been a good way for them to gauge her cognitive ability and for her to showcase what she understands.

Is there anything else which has helped you get to this point?

Research. I have researched anything and everything about her condition. I have found social media communities and connecting to other parents in a similar situation very useful.

Our main hope is that she is happy and for her to have a happy life. For her to be able to talk would be fabulous but it isn’t the end of the world if she doesn’t. She is enjoying life and she brings so much joy to the people around her.

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