In May of 1998 our wonderful son Ben was born extremely early and we spent his first 61/2 months with him in ICU units in London, Sick Kids and the Soo.
When you are pregnant you are excited and you have all these hopes and dreams for your child; such as they will grow up and become independent, they will get a job, they will get married and have a family and you will one day get to experience the joy of being a grandparent. As your child grows up and out of the household you also have plans for what you will do when you once again become an empty nester.
When you are the parent of a child with a physical disability your hopes and dreams change and you have to learn to look at life differently. This can be very challenging when you see your nieces, nephews and friend’s children all doing the things you had dreamed of; and your child is struggling to do simple day to day activities such as asking for help, dressing or feeding themselves. Something as simple as going grocery shopping requires either a caregiver to watch your child or a unique juggling act of pushing a wheelchair and shopping cart at the same time.
Very early on Ben was diagnosed with cerebral palsy, hydrocephalus and severe hearing loss. Ben is now able to communicate through modified sign language, gestures and an augmentative communication output device which allows him to tell us his wants, needs and to share his sense of humour. We are lucky as not every child can do this.
To touch on a few things over the course of his almost 19 years Ben has had: 13 blood transfusions, 6 brain surgeries related to the shunt; he has had a feeding tube; surgery to prevent him from vomiting so he could gain weight; has had numerous trips to Sick Kids; has had to learn to chew and swallow food so that the feeding tube could be removed; has had laser surgery done on his eyes to prevent blindness; has had a hernia repaired and every three months he gets needles in his legs to help reduce his muscle tone to assist him with walking (just a few of the many procedures and surgeries). He has gone through several different walkers, strollers and wheelchairs.
Your generous donations to Easter Seals and hard work at the events such as the Easter Seals Telethon, Change for Change and Snowarama have assisted our family…
Until Ben turned 18 Easter Seals assisted us with the lease of his augmentative communication device which has allowed Ben to communicate. Without this device, Ben would not be able to tell us when he is sick, what he wants to eat, etc.
It took us almost nine years to toilet train Ben, and Easter Seals provided funds to assist with purchasing of diapers for him.
For the last five years Ben has been able to attend Easter Seals Camp in Perth. Up until this year, Easter Seals has also provided a support worker and the flights to and from camp at no cost to us. We do pay for Ben to attend camp to ensure he has a spot but I can assure you what we pay in no way covers the cost of his care for the 10 days away. For many families who cannot pay the fee, your donation allows Easter Seals to waive the fee for those that qualify.
In 2008, Ben had the opportunity to be a co-ambassador and that was such a memorable year for Ben as well as ourselves.
They say it takes a village to raise a child. In our case, we truly have been blessed because we have really seen where the village has helped us raise Ben to the best of his abilities.