My 5 year old daughter Lola loves being around people. She is one of those children that people just gravitate to because she is so smiley! Lockdown has been really hard for her and for the rest of the family and we are really looking forward to getting out and about again.
I am Lauren and together with my husband Ross, Lola and her 3 year old sister Maddie, we live in Elgin in the north east of Scotland and I want to share my story.
Lola’s birth was traumatic and she was in the neonatal ward for a while after she was born. That’s when the doctors told us that there was a possibility she could have cerebral palsy. And it would be a further year before she got the full diagnosis.
Wait and see
When you have your first baby you just assume everything will be okay. But it wasn’t and it was just heart-breaking. In the early days you just don’t know, you are ‘waiting and seeing’ – it might be fine and it might not be.
Her first year was hard, she had infantile spasms which are awful seizures that affect brain activity. They steal away a child’s milestones and caused her to regress so that she lost the lovely smile that she had just got. At the time it was another trauma to cope with and over time she got through that and stopped having the seizures. But, since then, progress has been slow and we support Lola with every aspect of life – dressing, feeding and playing.
We live two and a half hours away from Aberdeen so it was really difficult to get the support that we needed. Her physiotherapist was great but we didn’t get to see her often enough so when she suggested Cerebral Palsy Scotland I was so excited that we could perhaps do more for Lola.
Before Covid we had a series of therapy sessions in Glasgow and Inverurie. Lola is nonverbal and those sessions worked on her making a sound to identify what she wanted to play with. This was massive for us as now Lola can be active in whatever we’re doing and it’s given her a voice.
I can’t thank donors like you enough for the difference these sessions made, not just to Lola, but to our family.
Lockdown has been tough for everyone and I am sure that like me, you didn’t expect it to go on this long! By the time we got to December last year I was getting more concerned about Lola and how difficult things were for her. So we contacted Cerebral Palsy Scotland and were offered some virtual sessions with their therapists.
I couldn’t believe how helpful a virtual session could be. Lola had a new chair to allow her to sit on the floor and play with her sister. The first thing Sandra our therapist said when she saw her on camera was that it wasn’t set up properly. She helped us to tweak the chair to make it more comfortable for her to sit in. Now Lola can be involved in playing with Maddie as they are both at the same level on the floor. I love watching them doing a jigsaw together with Lola picking up the pieces!
To be honest, I dread to think what would have happened to us if we hadn’t found Cerebral Palsy Scotland. They have helped us to understand Lola’s disability fully and to interact with her in a way that gives her choices. They have given her a voice.
You were here for our family
We have benefited so much as a family; they give us a boost and give us the motivation to carry on and realise that we are doing it right. I would hate to think of other families struggling on their own. Cerebral Palsy Scotland has been there for Lola and our family when we needed them but I know that was only possible because of people like you. Your donations allowed them to provide the virtual sessions that helped us so much.
There are many families out there who are finding it tough at the moment, families who perhaps have had that diagnosis of cerebral palsy during lockdown and don’t know where to turn. A donation of £17 will ensure that Cerebral Palsy Scotland can be there to answer the telephone support line to parents who are being told to ‘wait and see’.
I want those families to have the opportunity to do everything they can to make the most of their child’s abilities. Cerebral Palsy Scotland have helped us to unlock Lola’s potential – will you please help their amazing therapists to be there to support other children to reach theirs?
Thank you
Lauren
