Dealing with Down Syndrome – The Jensen’s Story

 

 

“Having a child with down syndrome is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip.”

The Jensens have three children, their youngest daughter, Tory, was diagnosed with Down Syndrome after she was born.  In this video, Tory’s parents talk about how their life changed and what their family life is like ever since Tory entered their lives. They speak about how it’s a blessing to have a child with a disability , children like Tory have the ability to change them for the better.  They help make connections with people one would not have met otherwise.

“The pediatrician said he had spent 30 minutes examining Tory and that he believes she exhibits the traits of Down Syndrome.”

Tory’s diagnosis was only found out after she was born. What doctors sometimes forget is that although sensitive cases such as this one is not rare for them to come across, it is for the parents and news such as this needs to be delivered with more sensitivity. Tory’s mother talks about how she did go through a mourning process and how most parents who are born with a child who is not perfectly healthy, do mourn their not so perfect child. 

“We’ve learnt not to place expectations on her development. She is who she is, she’s going to do what she does.”

Having Tory around, has made them more patient. The Jensens have learnt how to communicate with one another better, as it’s imperative in order to figure out how they need to handle the changes. This has also benefited their other two children who now tackle everything head on. 

The Jensens talk about Tory having the sweetest heart. She views the world from a different lens, a lens that most of us should view the world from too. She doesn’t put limitations on people and is quick to show affection. She hugs people when they’re sad and reassures them by telling them that it’s going to be alright. Tory teaches them to be better people everyday. 

“If we could love the way that she loves, I think things in this world would be alot better, if we could see the world through her eyes.”

Tory’s father says that it’s been a different journey, not negative, just different.  

Dr. Tracy Papa says that regardless of when you receive a diagnosis, it is important that this news is passed on in an empathetic manner by someone familiar.  It’s important for parents not to set expectations. It’s not anyone’s job to define what’s possible for one’s child. Parents should get in touch with people in similar situations and reach out to people because help is always there.

 

If you can identify with this story, please share it with others who care for someone and help them share too. The feeling of understanding, not being alone and access to support is what keeps caregivers going.  

Sharing your story helps understand yourself — feelings, passions, hopes. It lightens the load and offers relief from loneliness, anxiety, anger or guilt. Our experiences and hopes can benefit others – to know that the challenges are the same, learn new ways to cope and care… they aren’t alone but part of a team.

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Source: Dr Tracy Papa

This video has been curated by Caregiver Saathi. All Rights are Reserved with the original publisher and creators

 

 

 

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