Diagnosis can come at different times for everyone.

It may be while pregnant, at birth, after months of testing or after years of fighting for answers. 

Before diagnosis there is always a part of us as parents that hope that the suspicions we have are wrong.

That the doctor will come into the room and say that they are just taking longer to develop and they will catch up. 

Once that diagnosis is confirmed, often without empathy or compassion – we change. 

Your child has not changed just because they have been given a diagnosis.

I felt scared; how can I cope with this? 

How can my child cope with this?

If I had a time machine I would go back and tell myself to do things a little differently.

I would tell myself Bella had not changed from the baby she was before the appointment and after the appointment. 

She must have noticed that I looked at her with sad, sympathetic eyes for 6 months. 

I felt I had let her down, I felt scared of her – suddenly I felt I wasn’t qualified to hold her correctly, maybe I was playing with her wrongly or was doing something to hold her back even further. 

The truth is, she didn’t change she had always been this way and was doing fine, we didn’t need to do anything differently.

We just needed to understand how we could improve and help her as best as we could. 

Ask for more help, we are not special; we are ordinary people who have been thrown into a very lonely, scary world. 

People won’t understand what you are going through unless you tell them.

I would tell myself to talk to people about how I felt and exactly what Bella’s diagnosis meant. 

I would let friends and family know more about Cerebral Palsy and the impact it has on our life. 

I would ask them not to tell me everything will be ok and that she’ll be running around in no time, because it’s insulting and it’s easing their fears and not mine.

I would be honest about the fact that my entire world has fallen apart and every minute of every day I worry about what her future will be like and how I can be a doctor, physiotherapist and mother as well as be myself. 

One major problem we have is getting medication, if the paediatrician has diagnosed it at the hospital then the GP generally refuses to re-prescribe when it runs out so I have to insist the paediatrician write everything down for the GP.  

Focus on the positives

I would tell myself to be more assertive, ask more questions and not wait for people to tell you how you can access help, and financial support.

Don’t be afraid to be assertive, mistakes happen (frequently) on the NHS and you really have to be on top of whats going on to make sure everything runs smoothly.

I felt it was the job of the doctors, physiotherapists and other health professions to tell me all that they knew about Bella’s condition and to communicate with each other. 

Sadly this isn’t always the case, communication can be poor between different areas of care, sometime equipment orders can get lost or referrals can go missing. 

It can feel like you are being a nuisance but in the early days so many things went wrong I ended up feeling forever let down and angry.

So now I am always on the phone chasing equipment and appointments or writing down information to discuss with other doctors. 

Lastly, I would say it’s okay to be angry.
 
It’s okay to be broken hearted and jealous of others around you whose lives seem perfect and easy.  
 
You will always have bad days when you believe you cannot cope and you feel the world has been cruel but they become less frequent.
 
I would promise myself that there is no other feeling in the world then the joy of when your child achieves something small, it’s impossible to describe but it’s wonderful. 

 

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