I never really understood when people said they blocked out bad things from their memories. How do you do that ? Isn't it there anyway ?
Last year as I have said before Chloe had a thrombosis. A deep vein one. And I blocked out the memory of the day we discovered it. Blocked it right out as I realise now I couldn't handle the awful reality of what it meant.
The day we found out it was there, we needed to remove her PICC line ASAP. There could be no waiting. The NUM came down and told us what had to happen. At the time I thought it was nice she did (yes I am delusional at times) that she just wanted to make sure we were ok. We knew that it was there by this stage so that wasn't a shock, we discovered that a little earlier. It was nice she did, and I know she wanted to make sure we were ok, but she also knew the potential seriousness of it all. So Chloe was sedated through her drip, off to a wonderful land :) We were on the ward and in the treatment room. And there were 4 registered nurses, including the NUM and oxygen and resus equipment waiting. That was the bit I forgot. The bit where they needed to watch her O2 sats so closely as removing the line could have dislodged the clot.
All we cared about was getting rid of the line. I forgot the look of worry on the faces of the nurses who adore her. I forgot the looks they all exchanged as the line was removed. I forgot the fear that permeated the room we were in. I needed to forget it I now know. I needed to not look backwards with fear as then we had to begin anti coagulant treatment which all by itself was traumatic. I needed to concentrate on her, not on the could have beens. And the nurses did such an amazing job of staying calm. And for that, I thank them.
And you know, it was ok. And you know I will never ever take for granted my children's lives again. We were so lucky. And we had our own little timb bomb ticking there for 6 weeks, as that's how long it took for the clot to go.
And since then we are all a little jumpy. Chest pain (that goes hand in hand with chest infections ) always evokes the fear that there is another thrombosis. Sore leg...the same. Has it come back ? It may at anytime. We won't ever breathe so easily again about anything. But we will always treasure the moments as you never know when they will be taken away.
Sunday, July 26, 2009
Thursday, July 9, 2009
I wouldn't swap it for the world
So we all know it is tiring to be in the situation we are. A child with a chronic illness is exausting. The continual reevaluation of what we are doing. The therapies. The dr's appointments. The medication regime. The dealing with dr's, teachers, receptionists, well knowing people, it is tiring. The sleepless nights when we listen to her breathe, when we see her breathing falter a little. The sleepless nights when I lie there worrying that we are doing the right thing. The fear that the next infection could be the one that puts her into PICU or worse.
But I know we are lucky. So so blessed actually. We get to experience all of this.
Most days walking the girls into school I pass a car that has a website address on it. It is the car of a teacher at school. They lost their little baby girl earlier this year to whooping cough. And I know they would give it all to be able to be looking after her on earth still. I am reminded every day that our stress and worry is nothing compared to the grief of parents who lose their children far too early. I know that their sleepless nights eclipse ours. I know that no matter what she is here and she is gorgeous and we are lucky. And the heartache we experience pales in comparison to the heartache of not being able to do this anymore. We are lucky.
But I know we are lucky. So so blessed actually. We get to experience all of this.
Most days walking the girls into school I pass a car that has a website address on it. It is the car of a teacher at school. They lost their little baby girl earlier this year to whooping cough. And I know they would give it all to be able to be looking after her on earth still. I am reminded every day that our stress and worry is nothing compared to the grief of parents who lose their children far too early. I know that their sleepless nights eclipse ours. I know that no matter what she is here and she is gorgeous and we are lucky. And the heartache we experience pales in comparison to the heartache of not being able to do this anymore. We are lucky.
Wednesday, July 8, 2009
It is tiring
What a week and it's only Wednesday now.
One of the hardest things for me, and I know others in similar situations, is the vicious circle you get caught up in of trying to do the best for your child, please lots of other people and still maintain your sanity.
The dealing with drs. Well mostly it is fine. But sometimes drs suggest things we as parents don't agree with. So we question their choices. And on a good day, they are ok with the questioning. But they are human and they have bad days. And on bad days they get defensive of what they suggest. They believe that they truly do know best. And sometimes they do. But sometimes...just sometimes there is more to a patient than they see. And then when you question, you risk upsetting the calm of the room that your child depends on to see them through. It is our job as her parents, to give her the feeling of trust she needs in these drs and nurses. If we disrupt that calmness by our questioning, leading to unrest in the adults, then she loses her feeling of security. And she needs that, so so much.
And then there is always the knowledge that if we refuse things, then we can be seen as neglectful. And although people may laugh and doubt that anyone would call either of us neglectful parents, I do know it does happen and the system is designed to pick up this. And I can't argue with a system that sometimes gets it right where kids are concerned.
And then every man and his dog has an opinion of what we should do. And sometimes that is hard for us to deal with too. If we ignore that in their minds we are not doing all we can to help her. So someone, somewhere often thinks we are doing the wrong thing. And that knowledge sometimes for us is really hard to deal with.
And then you add in school. And the different people we need to deal with. And the fact that a medical professional suggests one thing, the school disagrees. What do we do ? Do we agree with what the medical professional says and isolate the school entirely. We do actually agree with the medical professional so now we need to challenge the school. And it is not personal you know. When I ask questions of the people at school I am not attacking them. Every day I am grateful for what they do. But I am her mum. And I need to do what is right for her. And sometimes that means I question and I challenge. It is not personal. It doesn't mean I am not grateful. It means that I need to do what is presented to us as the best long term situation. And I am sorry that it appears I am not on their side.
One of the hardest things for me, and I know others in similar situations, is the vicious circle you get caught up in of trying to do the best for your child, please lots of other people and still maintain your sanity.
The dealing with drs. Well mostly it is fine. But sometimes drs suggest things we as parents don't agree with. So we question their choices. And on a good day, they are ok with the questioning. But they are human and they have bad days. And on bad days they get defensive of what they suggest. They believe that they truly do know best. And sometimes they do. But sometimes...just sometimes there is more to a patient than they see. And then when you question, you risk upsetting the calm of the room that your child depends on to see them through. It is our job as her parents, to give her the feeling of trust she needs in these drs and nurses. If we disrupt that calmness by our questioning, leading to unrest in the adults, then she loses her feeling of security. And she needs that, so so much.
And then there is always the knowledge that if we refuse things, then we can be seen as neglectful. And although people may laugh and doubt that anyone would call either of us neglectful parents, I do know it does happen and the system is designed to pick up this. And I can't argue with a system that sometimes gets it right where kids are concerned.
And then every man and his dog has an opinion of what we should do. And sometimes that is hard for us to deal with too. If we ignore that in their minds we are not doing all we can to help her. So someone, somewhere often thinks we are doing the wrong thing. And that knowledge sometimes for us is really hard to deal with.
And then you add in school. And the different people we need to deal with. And the fact that a medical professional suggests one thing, the school disagrees. What do we do ? Do we agree with what the medical professional says and isolate the school entirely. We do actually agree with the medical professional so now we need to challenge the school. And it is not personal you know. When I ask questions of the people at school I am not attacking them. Every day I am grateful for what they do. But I am her mum. And I need to do what is right for her. And sometimes that means I question and I challenge. It is not personal. It doesn't mean I am not grateful. It means that I need to do what is presented to us as the best long term situation. And I am sorry that it appears I am not on their side.
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