Jo & Jess

Jo shares her experience of being a Mother, Carer

Jo, Mother of Jess shares the up’s and down’s of being a parent bringing up a child with learning difficulties. Would she change things?  SDN, thanks Jo for sharing with us. Jo writes-

“I am a mother, so are many other women. When you become a parent the whole world turns upside down and will never be the same again. This little human being put into your arms is yours, they didn’t ask to be born you created them and from that moment on you will be there for them no matter what. The love you have for them is like no other, sometimes it hurts you love them so much.

As they grow up, you nurture them, hopefully help them to understand the world we live in is sometimes good, sometimes not so good. You watch them become a person in their own right, become confident and go out into the world to create a life they want and no matter what they achieve, however big or small, you are so proud of them.

But sometimes things don’t go to plan and that little form put into your arms is going to need a bit more help to get to that same place. Why? They are disabled and life becomes even more topsy turvy, for them and you!

There is anger, fear, exhaustion, frustration. But there is also joy, laughter, and determination. But the things that really stand out. How it changes your life, the constant fight from day to day 24/7, and then there is the guilt!

I am privileged and proud to be mum of two wonderful children. Tom now happily married and given me two beautiful grandsons, but I wouldn’t be honest if I didn’t say some of his early days were somewhat challenging. But he has brought so much joy, fun and love into my life.

I have also have a daughter, Jess!

Where do I start? My daughter now 32, has changed my life and that of my family for the better. She was born fighting, has never stopped, and that has rubbed off on me. I wouldn’t change her for the world, her love of life, her determination, her energy and her great big smile which if we could bottle and sell, we would be millionaires! But I would change the system around her as life is one big battering ram and yes, I feel like giving up and have nearly done so many times but I never will as I am determined until the day I die I will fight to make sure Jess and those like her are protected and safe when I am no longer here!

At 12 days old Jess went through major heart surgery, given a 50-50 chance of surviving that and the first year. After weeks of 2 hourly spoon feeding and another 3 years of trying to encourage her to eat she was on her way. But at the age of two we knew something wasn’t quite right and she was diagnosed with learning disabilities. Then I noticed that her tiny little feet weren’t looking quite right and she was walking on tiptoes. For the next 5 years she wore splints which helped to a certain extent, but during this time was diagnosed with a degenerative foot condition, which will mean she will become a wheelchair user as time goes on. I will always remember the day that splints came off for good “Mum they hurt so much!” never once had she complained.

Then there was the year long battle to get Jess statemented so she could move to a special school where she blossomed. Leaving there at 19 Jess went away to college for 3 years on her return home Jess announced “I don’t want to live at home can I have a flat?” We thought life had been hard with the constant assessments, reviews, negativity and lack of support, it now trebled! Having gone through the removal of cataracts on both eyes it was another year before Jess had her first flat!

But the system never left us alone. The goal posts constantly changing and phone calls to ask whether Jess’s disability has improved, oh yes! The forms you have to fill in, find a box to tick that fits Jess’s disability and told if you don’t tick a box Jess won’t get a benefit”.

 

Next time “Hitting 25, does it get easier or harder”

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