Year: 2015

How much do you tell them?

Sadly I have come across many families who have had a child who is terminally ill or already passed away and I wonder and I sometimes ask  How much did you tell them about there illness and dying? I know it would have to be age appropriate and open to many or no questions the child may have. I find myself battling this conversation with myself on many levels and I will say to master 4 somedays, you do realise your body is sick inside and that’s why you can’t breathe well or run around like other kids? And he will say oh yeah I know but I’m not sick. I have a huge fear of not telling him enough about the after life and what happens if he passes and I haven’t told him ? I am not a religious person but I feel saying god is ok. I want him to feel that it’s just a journey as he is four and that our body is like a vechicle and sadly sometimes our bodies get …

Little do they know how much I look up to them 

Little do they know that I’m the one who looks up to my children. How brave and loving and non selfish they have become.  It’s not a normal situation to live in having your youngest two siblings be so ill.  Yes they still whinge and argue and little mr who is in heart failure is so bossy and he gets told off when he pushes there buttons.  I never wanted my older children to feel that just because the younger two are sick that they didn’t have discipline or rules. I have seen SO many families with one sick child tell there non sick children to just deal with it coz this child is sick and they get anyway with bad tempers behaviours and nasty crap.  I refuse to let my child think it’s a ticket to be nasty or selfish.  One thing that upset my older daughter one day was when she was attending hospital school as we live three hours away from the hospital and it was a long stay (over four months) …

Jinx thoughts 

I often find myself feeling like If I think a negative thought eg: death of a child or sickness brewing …… I will jinx it and I often find Im having a battle against my own thoughts before I even let them become full thoughts.  It’s a stupid mindset yet it’s also a survival mindset. I’m so alone and battling this alone. Which is fine as I’m also very emotionally strong. To have your children sick with such life limiting illness though is crippling and it hurts like no other pain other than a mother losing her child experiences. The emotional pain becomes physical and the physical becomes mental and it didn’t stop…. If your child is getting worse medically it gets harder and watching your child lose abilities we all take for granted is like another knife to the chest.  I watched my daughter suffer for 9 months in physical pain and no matter what drugs and what therapy or positions nothing would help. I begged and begged for help in hospital. She was …

Intro to me 

Hi  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 …