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Parent or Carer, which one are you?

SCYSS’s Blog Space.
Rounded Rectangle: Carol’s Space 
Sickle cell and childhood Stroke thro’ the eyes of a mother

This is a space that I have created to encourage you to think about your various roles as a parent, the various issues we face in caring for our children, effects of stigma lack of Transition for young people, young peoples first experience of adult ward, etc.

Parent or Carer, which one are you?

Written by Carol Ossai

I always seem to find myself saying that I am a Carer for my son and people will understand that I am wearing an extra hat as a parent.

I will ask questions that I have asked myself over the years and have not won a physical gold medal but my medal is my son. How I got here with him in University is something short of a miracle. I tell you! God is good.

My caring role goes above and over what I do for my other children. I know that if certain things are not done for my son it could have a detrimental effect on my son, my family and most of all on me.

So that makes me a parent right?

For me it’s a parent with extra medical duties.

I could be a parent with extra cleaning duties, educational duties or recreational duties, taxi driver but medical is different it’s sometimes a do or die situation! a situation that you just cannot ignore, a situation that can see you rushing to the hospital at 3 am in the morning or a situation where you always just have to be vigilant; watching in a state of constant readiness, always prepared to be by your child’s side.

For me the extra medical duties make me a Carer as well as a parent of course.

I found that once I was able to accept that I was a Carer, I was able to plan things which to cause as little disruption as possible, I asked for help, I accepted help, I knew I was not alone as I knew there was over 1 million other Carers out there that were not being ignored but supported in every way possible to make the caring role easier.

So why is it in the black community we suffer in silence? Is it because we do not want to be perceived as ‘weak’. We have to live up to the persona of a ‘strong black independent woman’.

Whilst we tenaciously go on, refusing to ask for help, keeping it in the family and by time we reach our 40’s we have run ourselves into a world of chronic pain and all sorts of illnesses attacking our bodies because we are exhausted both mentally, emotionally, medically and physically.

The majority of us are not Nurses or Doctors but we are on call day or night, we are ready to drop everything at the drop of a hat and swing into action, not only because we care but it would seem odd not too; but because we have to.

As parents our caring roles do not stop because our children have become young adults, flown the nest, our caring roles continues to extend to where ever they are, making sure they are in a safe, accessible environment, making sure they have an emergency code and a warm extra jacket.

I find my mind always flits to my son in Uni, is he warm, is he wearing a coat? Will he attend his blood transfusion? Questions, questions, questions, that’s the least I can do knowing he is far away.

So I ask again Parent or Carer which one are you?

You are not alone, Visit www.scyss.org/ for more support.

If you have a sickle cell or childhood stroke related article to share, please contact me by email carolossai@scyss.org


Helpful links

Websites:

  • Sickle Cell and Young Stroke Survivors: www.scyss.org
  • Carers UK:   www.carersuk.org
  • Contact a family:  http://www.cafamily.org.uk/advice-and-support/

Books:

  • A Parent’s guide to managing Sickle cell disease:    https://goo.gl/Jsa8Th
  • Duties to parent carers and carer’s assessments:        https://goo.gl/kxwlL6

Do you have something to blog about? Send it to us to publish.

Lets talk about issues that limit us receiving the help we deserve.

 

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