Welcome to my blog!
So a bit about me and this blog – so I am a MUMMY first and foremost and my life is chaotic! But I am also a carer to a beautiful baby girl who is actually a six year old small person (Born 2012) (But she’ll always be my baby!)
The last 6 years have been a whirlwind of hospital appointments, therapies, dirty nappies, sleepless nights, tears, laughter, heartbreak and total utter chaos.
I had an idea to do a blog a couple of years ago but I have literally not had the time. I am sure any parent with a child with special needs, can empathise with how life becomes a roller coaster –with ups and downs you could never imagine. Stresses and strains that frequently hit you up-side-the-head physically and emotionally.
I have been depressed, drained, happy, elated, tired, in pain, euphoric – all in one day! These roller coasters are constant.
When I first became a mummy to ‘Baby G’, my life changed, completely – what I thought was a bad night’s sleep (5-8 hrs) before, became a distant memory. I was surviving on 3-4hrs, broken up across a day!
Biscuits, cakes, sweets became my best friend and my hair did not see a brush or comb for quite some time. I was a wreck.
Baby girl worked us hard – up every two hours for at least 6months, crying, screaming episodes, frequent trips to A&E – , not sleeping during the day or settling at night – things were not at all as I expected it to be.
At 10 months we were then given the news our daughter has a rare condition – Chromosome 18Q– , with this she would likely have learning difficulties. My daughter has a deletion 18q 21.31 q23.
To be honest, at first I was relieved when we got the news as I thought things would get better. Having information would mean we could be in control, get help, things would get easier – right? Well, nope not at first as her condition was rare so the doctors could not tell us much at all! Even google struggled to find us information.
Don’t get me wrong there was some information, just not a lot. Looking back – it was a blessing in disguise. But at the time it left me feeling helpless, scared, alone, angry, bewildered, did I mention angry?
I was super angry, angry my daughter had this ‘thing’ and angry that life was now unpredictable in a different way. I was scared and tense 24hrs a day. Scared something was wrong with her, that I might miss something important. Confused as to what her future might be like. Angry that, up until this point things had been scarily hard, frightening at times long and draining.
What followed was the start of the never ending trips to hospital for hearing, eyesight, growth check ups. I could have pitched a tent in the car park as I was there so much – if it wasn’t an appointment it was an emergency.
Fast forward to 2016 and everything has been a blessing. I did not return to my previous job (which I had outgrown, had lost passion for) and I stayed home and became her full-time mummy carer. Over the last couple of years I have learnt so much about parenting, practical things, useful things but as well as that I have grown spiritually.
I have an appreciation for life in a way I did not before. Having a child is a miracle and raising them whilst keeping your sanity – another! I hope my blog can help you feel like you are not alone, maybe give you some information/ideas to help with you and your child and maybe give you that little bit of motivation that we all need from time to time.
This is my first blog and so, I really would like feedback, suggestions and even any tips you might like to share!
Peace, Love and Prosecco! x