Author: beingmumcarerprotector

Please don’t pity me

It’s funny how many people feel sorry for you or pitty you because you have a hard life or have a different life.  I don’t want pitty just treat me the same as you do another friend or stranger. I am happy yet tired excited and driven and can still laugh and share a joke. Hell I’m still me!  Yes you see me with four children and two children in wheelchairs and you put your head down. Please don’t !   Just smile please  Just be yourself please For I don’t want pitty  I just want to be like you or them I just want to be  Be  My life revolves around my family yes, because I make the decision to be hands on and totally involved. I love them with everything I have and am and I want them to be with me for as long as possible. I don’t wake up regretting or feeling sorry for myself. I get excited about birthdays and Christmas. Family is family whatever package you arrive in.  I …

Inventive side 

It’s amazing to see your inventive side come out when you have a child. The things that you do to make life easier or more enjoyable.  Right now I have a netball ring in my loungeroom that I’m using as a toy hanger. So I push my daughters chair under it and hang toys so she can play. I can mix it up everyday and show her different things. It’s almost Easter so I have paper eggs hanging. I also hang measuring spoons from the kitchen and cut chux cloth to use as rope.      When she was little I struggled to bath her as she always thrust back and holding a baby who has no idea how to control the movement or spasms is tricky. So she wouldn’t fit in a normal style bath chair so with PVC pipe and sun shade cloth pulled firmly across a frame a seat was made. The mesh would have holes to drain the water and the frame would help save you hurting your back or dropping your …

The milestone race 

How many times do you remember another mother saying something like oh my child crawled at six months  and another saying mine did it earlier.  Well when a disabled child is born many milestones will never be reached and many times a child passes the age of a milestone it’s another grief point. I think for the first two years of my disabled child’s life I was  grieving what they can not do and coming to terms with the the whole disability. Many times when  they are a baby they can look so normal and as a parent your in protector mode so you don’t want any doctor or therapist telling you what your child won’t do. Plus your still learning or researching this new medical world.  I am lucky to have four children and three who can walk and talk and eat and go to the toilet and play and entertain themselves.  Imagine though if this sick/disabled child was your only child and you were attending parent groups or play groups with mothers of …

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 …