Friday, 28 July 2017

UNCOMFORTABLE SHOES, BUT LOVE IT

Ever heard of Coffin Lowry Syndrome? Well, neither did I until a few days ago.
Coffin Lowry Syndrome [CSL] is a rare genetic disorder consisting of abnormalities of growth, head and facial [craniofacial] area, short stature,  learning disability, cardiac abnormalities as well as visual and auditory abnormalities.

Meet our star of the week- She has very uncomfortable shoes on but she loves it... This is her story.



I am a wife and mother of four children. My eldest child and daughter Rebecca was diagnosed with Coffin Lowry Syndrome.  She has auditory abnormalities. It can be very challenging and difficult caring for her.


It has been a long and difficult nine years and there were times it caused a great strain on my marriage.

My husband and I did not have time to spend together or go on date nights as she needed 24/7 care. This almost broke my marriage, but having the strong network of family and friends to support us and help with her, allowed for us to have a bit of time for ourselves and rekindle our marriage. This also helped build and make our marriage stronger.

For a very long time,  we could not attend parties /events we were invited to simply because we did not know how people would react/respond to seeing her.
Eventually,  we decided we couldn't go on like that and started taking her out with us and sure enough, we were getting the looks, murmurings and  side talks but we didn't care.



A few months ago, in May to be exact,  my second daughter, Michelle who is a little over six years old was diagnosed with Mild Autism after been referred to the specialist team.

She had been struggling at school and was displaying challenging behaviour.



I felt like my world was crumbling when I got the result.  I couldn't understand why God was allowing this happen to me.

There are days I break down and cry. I blamed myself sometimes that maybe it was something I had eaten or done wrong whilst I was pregnant that made my daughters like this. But God has been my source of strength, I couldn't have survived this without Him and of course the amazing support of my loving husband.

My husband loves his girls and will do anything to make them happy.

People who know me always ask how I do it. I am always smiling, jovial and happy despite having to deal with two special kids, their younger sister and baby brother.

Dealing with the kids and maintaining the home is not easy but I take it a day at a time and I'm thankful to God as I and my family cary on and not give up.



My advice for women in similar situations is to ensure they make out time for their husbands,  no matter how busy and stressful it becomes. Also, husbands support your wives and be there for them. Together you can make your marriage and home work.


My name is Frances Ogbodobri, even though it’s tough,and my shoes feel so uncomfortable, I still have my shoes on and sparkling through it all.




4 comments:

  1. You go girl! Thats the spirit we are specialists Morhers with great special children.

    ReplyDelete
    Replies
    1. So true
      You are both definitely awesome mothers.. Keep being who you are and doing what you do. ♥

      Delete
  2. You are indeed a supermom! God bless you and your family real good.

    ReplyDelete

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