As a human being I am pre programmed to survive, and so far I have survived every single day I have lived. I have many coping mechanisms; some are innate, some are learned and many are haphazard. 

I do alright and like most parents of children with special needs I receive many compliments on my ability to keep going and the strength I must have.

I do keep on going yes and strength is undoubtedly something I have in my arsenal but it isn’t just within me, no!

My strength comes from all around me, my tireless husband who despite everything we have been through demonstrates every day his love for me and for his children.

Seeing him managing our budget and preparing meals, carefully balancing the books and working hard to ensure he is around when we need him.

I draw strength from him because I want him to be proud of me as I am proud of him. I love him and I feel his love.

My friends, they just know me. I am strong because I know at times of weakness they’d be there like a shot (probably holding a tray of shots). I know it’s OK to cry and I do… lots!

But on the rare occasion that I do my hair and make-up for a fun night out with the girls there’s a stubbornness in me that refuses to go down the route of crying in the toilets and emerging blotchy and red eyed!

My big girl, my six year old makes me smile with her mature attitude to life. She was four when her brother and sister were born at 24 weeks.

Extreme prematurity affects siblings, there’s no way round it. For months she either attended daily visits to the two separate hospitals or stayed with grandparents or friends.

Her normal was in no way normal, but she enjoyed her special jobs of delivering my breast milk to the nurses and singing to the babies through the incubator doors.

Even now she is caring and kind to her brother and sister. Hair pulling and tantrums don’t phase her. I am strong for her because I want her to have countless fun and positive memories of her childhood.

It goes without saying that the twins give me strength, they don’t know how fortunate they are, how close we came to losing them.

It’s impossible for me to describe our NICU days, I’ve tried but I really don’t have the words yet. Suffice to say both babies were extremely poorly.

Miraculously M, my little girl is now medically well and developing steadily. Sadly T, my little boy suffered grade 4 bleeds on his brain which has lead to him developing Hydrocephalus, Cerebral Palsy, Cortical Visual Impairment, some hearing loss.

It is fortunate that he knows nothing of any of these medical terms and thoroughly enjoys every minute of every day.

Both twins exude happiness and a joy of life which is infectious and precious. I know how quickly these early years will become memories so I am determined to relax and enjoy them.

Parents, I am lucky to have three sets of parents including my In laws, Dad, Stepmother and Stepfather.

Just over a month ago though, I lost my Mum. Crash! There’s a massive void in my pool of strength now. I can’t fill it or replace her, I miss my mum like a lost limb and there’s no way to ease the pain.

I am weaker now than I have ever been and it shows. I see it in the mirror; my husband senses it and the kids must feel it too.

Hence, this blog. Can I draw strength from sharing my feelings?

Will this help?

I don’t know but I do know I enjoy reading other people’s blogs.

Maybe someone will be able to draw strength from this… I hope so.

Jo x

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