Tim and Melinda Barnes
Both run their own small businesses
Age of parents:
38 and 33
Age: 9 years
Is this your only child? It has been traumatic having had a child like Sarah, I’m too scared to have another.
Diagnosis of child: Sarah was born prematurely, I’m not sure why but as a result she has many difficulties such Cerebral Palsy, Cortical Visual Impairment and seizures.
What are the biggest challenges facing your child on a daily basis?
I would like to be as honest as possible about our journey with Sarah, to start I love my child more than life so it’s difficult to speak about her difficulties. She is very challenged and requires 24 hour assistance for everything. She is dependent on us for everything.
What are the happiest moments you have with your child on a daily basis?
Her pleasures in this world are simple and it’s mostly around physical contact, we enjoy sitting on the couch and watching a movie together or sitting outside under a tree. Sarah is surrounded by a lot of people who love.
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
We adore our daughter but have gotten caught in the trap of living our life through Sarah’s disabilities. It’s problematic how we have obssessed over her and put very little back into ourselves . We are exhausted, we are financially taking strain and physically, our bodies are sore from carrying her. At the moment neither of us are enjoying life much and we need to start making some important changes.
What has your child taught you about yourself, both positively and negatively?
I love my daughter, I wish I could make it better for her but I can’t, she will always have serious disabilities despite all the therapies, surgeries etc that we have done for her. I know she wants us to go on with our lives and that is what we trying to do. Postively - we have a strong connection, despite the fact that she has never spoken a word, we understand each other perfectly. Sometimes you don’t need words.
Are your family and friends supportive?
I have found it difficult to let people in, we have good friends and kind family but I don’t ask them for help. I cant bare people feeling sorry for Sarah or us.
Do you take time out, if so what do you do to relax?
Yes, it took forever for me to finally believe that a happy mom makes for a happy kid.I need time out of her routine, I need to be around adults, outdoors and in creative spaces.
What has made the biggest difference to your child’s quality of life?
All the therapies and interventions have helped but what has helped the most is managing her chronic pain with the correct medication. Sarah is a different child now, who is happier and easier to be with.
What is your dream for your child?
If I could fix her brain I would but I can't, so my wish is that Sarah is always surrounded by kind patient people who know how much she loves to swing, who bring out her water toys on hot summer days, who take her out for walks and read her stories. When I can't care of Sarah anymore, I hope there are always people in her life who love this beautiful child of mine, as much as I do.