올리비아에 대하여| The One with Kenny -  The Unspoken Love of a Father: Episode 30 (2018)

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The More Sibyl Podcast Presents: The One with Kenny

Still on the daddy issue (I know! But hear me out on this one). This week’s episode started with an email I received from one of my ardent listeners - who was also today’s guest on the show. It was also the first official fan mail I got!:

Dear Mo:

Everyone believes fathers should be strong and just provide financially while the mothers raise the children. I am a father of a 3-year-old daughter with a rare medical condition (which has resulted in massive learning/developmental delays). My wife and I are very hands-on in raising our daughter. What I've experienced in the three years of fatherhood is that the mothers get more support than fathers. I'm Nigerian born but been living in the UK for the last eight years. Do you have any guests who can talk on the topic - fathers and support for them?

 

The contents of the email tugged at my heartstrings. After much reflection on the choice of guest, I decided to ask Mr. Kenny if he wouldn’t mind doing the honors as I could not think of any other perfect guest to do justice to such an important and rarely discussed topic.

 

In this episode, you will hear about the challenges, societal expectations, and triumphs of raising a child with special needs. You will also hear tips on how to build and foster support for those with special needs, especially for parents and caregivers. More importantly, you will hear about a father’s love; the kind that is unspoken but constant, affirming, assuring, and ever-giving.

 

PS: Olivia’s condition is called 1p36 deletion syndrome (also known as monosomy 1p36). It is a congenital genetic disorder characterized by moderate to severe intellectual disability, delayed growth, seizures, limited speech ability, and weak muscle tone with varying symptoms depending on the exact location of the chromosomal deletion. There is no cure for this disease. Treatment depends on the symptoms and may include rehabilitation/educational programs, antiepileptic medication, and standard therapy for affected organs. You will also hear about a day in the life of Olivia.

 

According to Kenny:

  • Olivia’s condition has brought him and his wife together, as a closer family unit.

  • Don’t be afraid to be open and vulnerable, especially to those who love and care about you.

  • Be their voice and advocate, especially when talking to health care providers.

  • Read, research, observe, and pay attention as much as you can on the condition.

  • Love is a powerful tool with healing powers; make sure to show your children love.

  • Social support is critical when dealing with rare diseases. Find a patient advocacy group to belong to and if unavailable, consider starting one that is relevant to your cause.

Fun facts about Olivia:

  • She just turned three and is quite the spunky three-year-old with some sass. #Yasss

  • She loves her soft toys.

  • Her favorite color is blue.

  • She loves grabbing things so be careful with your earrings, headphones, or necklaces when around her.

  • She is the boss of the house.

  • Hearing her distinct laughter echo around the house, according to dad, always warm his heart.

And to dearest Olivia, when you can get to read this, dad (and mum) would like for you to remember that:

  • You are beautiful and specially-abled.

  • You will be able to live a fully functional life.

  • You can achieve anything you put your mind towards.

  • Always show love to people.

Notable quotes by Kenny:

“There’s some Christian doctrine out there that make you believe that you can make your own destiny by force. And if something is not going the way you want, you have to, by force, proclaim it out of your life. It might work for some people and it might not work for some people, but in our own case, we will keep believing. We have the faith but there is also work we need to do. We will work with the doctor and Olivia, and at the end of the day, it will all turn out positive. So yeah, I guess it is down to you and your level of faith and belief.”

Recommended song:

"Daughter" – Loudon Wainwright III (2007) 

Respectfully,

모 /Mo!/