I’m purely writing this as I need an outlet. I’m totally isolated and people just don’t seem to understand just how hard life truly can be.
I’m a loving mum to four amazing children. I’m the proudest mum ever. My youngest two have sever medical issues and at the moment as of today it’s taking it’s toll. I’m emotional and I’m tired. I’m physically sore.
I feel so in love with my children and the saddest thing is I know my love can’t fix them or cure there illness/disability. Don’t get me wrong I love them for who they are but I would so do anything to make life more comfortable and beautiful for them.
I have two older children 12,15 and two younger 7 and 4
My 7 year old is physically and intellectually disabled, she is a pure soul so beautiful and loving. She has a condition no other child in the world has (or has been found to have) she has heart disease and quadriplegic cerebral palsy, epilepsy, peg fed, swallowing issues etx list could go on and on
Daily life is run by alarms for meds and daily routine. Lifting and cleaning, nappies playtime and house hold chores. Feeds cleaning meds.
I love my life I love my children and people often say how do you do it?
It’s not a chore it’s an act of love. When you look into your child’s eyes and wonder if they will be here tomorrow you feel lucky you have today. And with every little positive that’s what keeps you going. HOWEVER ……………….. On days like today I would love to curl up and cry for at least ten mins. See I don’t get ten minutes to myself. I am cool with that but on emotional days it takes it toll. My youngest is getting sicker and I’m watching his daily caring needs escalate and I’m already in maxed out mode I’m not sure how to add more stress and load to an already full load.
Watching him be so tired he can’t walk around the house much kills me. He calls out to me at least ten times a min for assistance with lifting him or carrying him or getting him things.
He spends most of his time sitting on my bed playing with toys mainly octonauts. See he is in heart failure and has been his whole life. He is four. And very aware of his declining abilities. He told me last week it was just to hard to attend preschool as he was to puffed out. He was born with half a heart. He has had two open heart surgeries and been on many medications, they are just not working very well at all.
Anyways that’s a start