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Hi my name is Lisa and I am honored that My Casual Mom has asked me to do a guest post on her blog.
At first when she mentioned it, I can’t help feeling like, “what would I write that would be beneficial to fashion & beauty?” LOL! “What would her followers want to hear from me?” But she wanted me to share a little bit about my story. I really hope you are able to take away one little nugget from my story. I think it’s neat how our relationship has blossomed through the years and what her blog has been doing for not only me but for many other women (and men) who follow.
My story starts with a miracle. Something that happened to me 9 years ago that has changed my life tremendously. I had my first child, a daughter who became known as Olivia Kay. Some of you who tune in are most likely mothers, and as you know, you absolutely pour your heart and soul into your children, and you have no time for yourself. After my daughter was born, my life became a whirlwind. My daughter suffered from a rare and terminal neurological disorder called Alexander Disease Leukodystrophy. The doctor had told me she was going to die, and she wouldn’t live long. She battled the disease all her life and never had the chance to crawl, walk, talk and enjoy life as healthy children do. My daughter required round the clock care, day and night. We had nurses in our home for 24 hours the last 3 years. After many surgeries, appointments, late nights, alarms, nurses in the home, machines and exhaustion, Olivia had finished her battle and went to heaven on April 28th of 2017. Olivia has taught me so much in her short little life of 8 years. It was extremely painful watching your child succumb to disease, is not the road anyone ever wants to sign up for. But Olivia’s life had a purpose. We all have a purpose in this very life.
She was my identity for the last 8 years. Everyone knew me as “Olivia’s Mom”. As her parents, we learned very quickly how to navigate and survive in the medical world. I rarely got out of the house. After having my son 3 years ago, I needed to care for Olivia at home when she became bed ridden and even more fragile. I didn’t leave the house often. We were not doing what most families were doing. Olivia taught me perspective, appreciation, humbleness and provided me the true example of what bravery and grace looks like. Being in the roles as caregivers to a terminally ill child, it molded us and shaped my husband and I. It was the toughest job ever!! After experiencing what we went through, we always had the desire to do something good for other families who have walked this intense journey.
In 2014, we started our non-profit organization in Dewitt called the Olivia Kay Foundation Inc. We wanted to help children and their families live a better life while walking through a journey of disease and illness. It’s not easy on families. You are desperate, alone and helpless. Now that she is no longer with us, we can continue to carry on her legacy through her foundation and bring joy and comfort to sick kids all over the nation and Canada with our nationally known #pillowproject. It’s amazing how one little girl, can inspire and bring attention to something so powerful that is just a simple tool – a pillow. (to read more, see article below)
As a mom who is grieving, I started drifting down a path of feeling lost because I had now have no identity. I just lost my daughter. She was my identity. I sit here today and realize how rarely I did anything for myself. I hardly went shopping and didn’t have the time to pamper myself during those 8 years. Now that I am still trying to navigate child loss, what has helped me is to explore some fun and exciting things that are going on in the world around me.
My Casual Mom has been a good outlet for me to stay in tune with the latest fashion trends and deals. And I actually just started a blog myself called (#griefbits – Navigating through child loss bit by bit) which allows me to have a platform to express my grief. I am trying to stay busy and in the process of putting together my first book in hope to have it published by next year. My husband and I speak a lot to groups, schools, businesses around the community who want to hear our story. Being a mother and running a foundation has kept me on my toes. But for kicks, I manage to squeeze in little photography from time to time, along with some shopping.
So to wrap up my super lengthy post….here are a few things to remember:
Enjoy life, treasure the moments, never take health for granted and always make the most memories with your children. We are here for a purpose and it’s up to you to live your life out in a way that will be rewarding and unforgettable to those who know you. Have fun, faith and fashion (that last part’s for YOU Brooke) 😄 And for those of you who lost a loved one, remember….pain and loss will change you, but they do not have to define you!
Thank you for letting me share 💜
For those interested in learning more about my story, feel free to check out a few of my pages:
People Magazine article – http://people.com/…/michigan-couple-crafts-pillows-pediatr…/
Follow me on Instagram @ griefbits
Follow me on FB @ oliviakayfoundation, lisa kay photography and #griefbits
Guest post, Lisa on Alexander Disease
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