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Honesty at a price 

        I came across an uncomfortable situation last night whilst in hospital with my daughter.  It was shift change and all was ok, I hadn’t met this nurse we had before and as a long term chronic child parent you tend to know almost all staff. Anyway all was ok when she introduced herself and then the following hour It started  She came in to do observations and said oh I don’t need to be in here only every two hours so I will come in once every four hours, I said so how do you figure that’s ok? My daughter is internally bleeding and in high care ward so how is that ok. Can you double check with doctors?  On return she came in with the scheduled medications for that time and I noticed her hands shaking, she grabbed at my daughters stomach tube and cannula (drip) and wasn’t sure what to do.  My heart sank ! I felt instantly sick with worry .. I watched carefully waiting to see if she would …

Hard times 

Things went from great to worse so quickly. We had a great run for about five months with the seizures and it’s never ever been like that before.  My daughter had managed to come off the heavy morphine and Valium and things were getting so much more comfortable.  Then ……  Seizures start again and in a 24 hour period things change  Three seizures within six hours and then a big bleed in her nappy. Scary stuff black maroon tary red blood Poo. Large amounts.  We take her to hospital where more bleeds continue and on arrival hb count high 150’s the next day after three more bleeds.  Hb 90  Following day endoscopy where the camera goes down her throat to look at her stomach and just through and they can see inflammation but not enough to be bleeding that much from below. They then do a meca scan to scan the lower intestines and after an hour still no signs.  More bleeds and then  Her gastrostomy peg ( she is fed through a tube into …

Hope

In the past week I have had a door of hope re opened.  I have taken master four for a cardiac cath and have just found out that his heart pressures are good and there is a window of opportunity open to go have his next surgery.     Yes Woohoo!!!!!  Even if the procedure/ operation is a variant to the full one I’m so happy. This means hopefully if things go well he will have more energy and be able to breath better. And the biggest thing will be having more certainty his life will be longer.  I had built myself up to expect bad news as the cardiologist had prepared us for many years to expect the worse. And since my son is so blue and puffed all the time it wouldn’t of surprised me if it was another bout of bad news. But this shocked me. I felt like saying to the doctor “are you sure you have the right family ?”  An amazing feeling when you don’t have to follow through on …

The unknown or the Unspoken

Is a life like mine a life people would prefer not to acknowledge? or is it so unheard of that its all so new ? Or do you hush and don’t mention it?   I often think back to when I had my first baby and how I actually did worry I would have a baby who had  a disability. Many people say it never even crossed their minds the thought of having a sick or disabled child. I did and I’m not so sure why this happened but maybe two reasons and one was I have a disabled aunt and I had lost my first pregancy. So I was somewhat aware of that kind of world.          But nothing and I say nothing can prepare you to the hospital world of seriously sick babies and children. No word No gesture No nothing can prepare you.  I felt so  thankful to be born and to be giving birth in this beautiful country where we had facilities to cater to such unique disease/illness. Thankful …

Letting people help 

This week has been a huge change to the normal routine as I have been receiving respite everyday for several hours.  This first week involved getting to meet the carers involved in A’s team and Master 4 team. A had a higher intensity care level so she needed more workers to rotate on her roster.  I have spent my days enjoying talking with these lovely carers and teaching them how I care for the kids. Miss A has managed to sleep in everyday which has given me the opportunity to get to know the carers.  It’s a weird feeling knowing I’m allowed to receive help everyday when I have gone so long doing everything the way I do myself. I felt guilty the first few days and I managed to go to lunch two days. My daughter probably had no idea I had even left for an hour. She was happily being kept comfortable and being entertained.  Finding a carer that fits in wasn’t a hard task as I thought it would be. One key …

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) …