Parents
Sandra

Age of parents:
38

Child’s name:
Owen

Age: 6 years

Is this your only child?
Yes, a younger brother Sam

Diagnosis of child:
Here’s the thing, when you don’t have a diagnosis, it’s like living in a constant cycle of heartbreak. You get your hopes up because, well, we don’t know what the future holds, there’s no coluorful brochure or wiki page on how this medical condition is going to play out. You only have the present and it could get better or it could get much much worse and you have no choice but to get comfortable with the unknown and just keep swimming.

What are the biggest challenges facing your child on a daily basis?
Uncontrolled seizures that don’t respond to meds. He is on several medications to try to control his epilepsy but this comes with some awful side effects.

What are the happiest moments you have with your child on a daily basis?
On the good days and the bad - music makes my family smile. We dance around the lounge, things lighten up and life carries on.

Are you married? Married.

Has your special needs child had an effect on your marriage?
More than anything in this world, I am grateful for an incredible partner with whom I can share this life journey with. For if we are placed on thi earth with a purpose, there is no doubt in my mind that Pete’s purpose is to be a father and he exceeds at fulfilling it everyday.

Are your family and friends supportive?
I used to envy the way Sam could see Owen without the sadness that tinged my view. However, as Sam is getting older he is gradually beginning to understand how Owen is different and it pains me to watch the sadness and worry creep into his life. There is no question that their special-needs sibling bond adds so much to both of their lives but like everything else in this parenting circus it is a balancing act.

What has your child taught you about yourself, both positively and negatively?
At times I can feel guilt, shame and anxiety - am I doing enough to help!
Am I doing enough therapies and interventions??

What is your dream for your child?
This time of year can be hard, sad and overwhelming. Just remember that your life may not look like others, and that’s ok. It’s ok to be sad, it’s ok to let yourself feel. You are doing enough just by showing up and loving your child. So let yourself feel, don’t shove it away, but then take time to notice all the little moments of joy today. Take time to notice the good stuff.