Beth's Blog - 20 Year Anniversary

"Jesse and I started coming to Footprints when Jesse was around 6 months old, 3 years ago now.  At that time, I felt desperate to find ways to help Jesse and to do as much as I could for him as soon as possible, after a very difficult start.

Jesse was born prematurely at 31 weeks, following complications in my pregnancy from 19.5 weeks.  Before Jesse was born I was told numerous times he probably wouldn’t survive and then when he was born, he was very ill and almost didn’t make it.  But Jesse was strong and got stronger every day, beating all expectations.  As we were getting ready to leave hospital at 3.5 weeks we were told Jesse had severe bilateral brain damage/Periventricular leukomalacia (PVL) – which is a type of brain injury most common in premature babies.

Doctors gave us a very bleak prognosis, that Jesse was likely to have a number of physical and learning difficulties and may develop epilepsy.  We were told he probably wouldn’t be able to see, hear, eat, walk or talk – things we had taken for granted as parents generally do, and things we had been privileged to experience with Jesse’s sister.  We were told it was likely Jesse would be diagnosed with cerebral palsy (and this was confirmed a little before Jesse was 2).  I told the doctors that I was glad Jesse had been born to me and to our family, because we were going to love him, do our best for him and give him as many opportunities but I knew from that day my life was going to be very different and full of challenges.I wanted Jesse to be included in society and give him all the chances other children his age were getting.  I wanted us to be a ‘normal’ family, but I also felt we were now very different to families with neurotypical children, especially at baby and toddler groups.  I felt there was often a lack of inclusion, support and provision for children with additional needs and at that time I didn’t know anyone with a child the same age as mine who was disabled.

He gets the chance to work on physical, communication, social, general development and life skills, but the sessions are also really enjoyable and Jesse has made some really great friends.

Footprints has been a place of physical, emotional and social support for Jesse and I.  I have experienced great support from the conductors and the friends I have made through the sessions. 

When there has been little support from other professionals, or when we have faced crossroads or challenges, we as parents, along with the conductors, have been able to offer suggestions or advice based on experience, or to just listen, because they understand the challenges faced and how it feels to raise a disabled child."

Beth x