Thursday, 4 October 2007

04Oct07 - Guilt

We recently looked at some old holiday photos from 2003 and it got me thinking. We had a week in the sun in a beautiful villa, just me, Dawn and Joshua. Joshua was 5/6 years old and we spent most of the holiday lounging around the pool or going to the beach. Joshua was happy running around jumping in and out of the pool or the sea. I can remember getting a little frustrated when Joshua kept nagging at me to go in the pool with him but I don’t think that is too abnormal. We had so much time for each other and ourselves not just on holiday but all the time. We used to say then how fortunate we were and how idyllic our life together was. Dawn and I often used to talk about it and I suppose gloat a bit because we just felt so lucky. We did sometimes talk about the bubble bursting one day but pushed that to the back of our minds and never really believed it could. We had so much time just to do our own thing and no timetable to control what we could do and when. Just occasionally and it is a hard thing to say and probably even harder to read but sometimes I yearn to have those times back. It makes me feel terrible when these thoughts creep into my head and the guilt is incredible. I know that it is not possible to return to that time and that part of our lives will always be a very special memory. I suppose I should feel fortunate that we had that time at all. What would I do if I had the opportunity to turn the clocks back? I am glad that I will never have to make that choice. There is just no comparison with the life we now have. Joshua has all but stopped trying to get me to do things with him, partly because of his age but mainly because most of the time I can’t or don’t have the energy. He just gets own with his own thing and I feel so guilty about the amount of time, especially in the evenings, that he has to spend on his own. One of the neonatal nurses Jill, said to us not long after Lucy was born that we should not make Lucy the focus of all our energy and attention. She told us a story of a boy in Joshua’s position who was asked if having a disabled sibling had changed his life in any way. He said that he still got some time with his parents but he never got time with both of them together. We do try to arrange to do things just with Josh and I know my mother is more than willing to help but if I am realistic I think that Joshua would probably give the same answer now. Time is so precious and so scarce. We even struggle to keep on top of all the normal daily chores. I have not done anything with the house for 18 months. Everything we do and everywhere we go has to be planned. We always have to make sure we carry everything with us. How many meal times will we be gone for? Do we need medicine? Have we got the midazolam in case Lucy has a fit? We can’t just decide to go somewhere, put our shoes on, get in the car and go, it just doesn’t work like that. I think I have said in previous blogs that arranging time for Dawn and myself is so difficult especially if we need overnight care for Lucy. There is really only one option for this and thats my parents.

It makes me sad to write all this down because I know how it sounds. It makes me sad to feel and think like this. What would Lucy think of me if she could read? It makes me sad because I know that it is not really the way I am. What I have now is very different from before but no less special. The experiences it brings are new but no less rewarding. We really wouldn't change it and I know I have said that before. Most of the time we can be very positive about things but we have also seen a lot of negatives and they are very good at hanging around. Yes we all have to work a bit harder and sometimes it all gets a bit much but we are happy and we are slowly adjusting to our new life. Lucy is truly a wonderful little girl and I know when I look in her eyes tomorrow morning, I will melt and everything will be ok.


fairenuff said...

Neil, I understand what you mean. I often think how lucky we are, how great things are because we have a sick child. How I have learned to appreciate every day and how I spend my day trying to make the girls laugh, giggle, enjoy and feel full of life. Then I feel guilty because it's like I am wishing Bethany's illness on her, thinking that things wouldnt be as good if she wasnt sick. Maybe I wouldnt have learned to love life so much if Bethany hadnt been so ill in her first year, Tony and I would still be working and sharing childcare, passing like ships in the night and I wouldnt be so fulfilled. Different to the reason why you feel guilty but still the guilty feelings that go hand in hand with having a 'different' child. But I do have the same feelings as you too sometimes. What would it have been like to have a healthy child first time round? What would it have been like if we hadnt had to explain to everyone who met us how Bethany was? What would it have been like to be able to show her off rather than being in hospital? And the biggie... what does it feel like to just decide to go out? There's definitely a sadness for the things we lost and the difficult time we went through for the first year - and also for what we know is up ahead. But I think you hit the nail on the head. When I look at my girls in the morning my heart will melt and another day will begin with sunshine.

(Sorry, I kinda hijacked your thread, but it's a BIG subject!)

Ben said...

I've been meaning to write a comment for a while but as you say time is so scarce. We have a 1yr old (Jonah) who following some mishap or other suffered hypoxic ischemic encephalopathy following a liver transplant in March of this year. When we were told the news one of the first things we felt grief for was all our hopes and aspirations for the kind of life we had dreamed of. That's so gone now. Replaced by a different life, much richer, much more complicated.

Like you we need to plan everything down to the last degree. And even then, Jonah will often throw our plans into disarray. Also, I share your feelings of guilt regarding older siblings. Often it gets too complicated and I figure that all I can really do at the end of the day is to love my kids utterly. I am sure that Jonah's brother suffers and often I feel guilty. But I console myself quickly as he is loved so completely.

As you, and the amazing fairenuff, says there are some wonderful things that go with having kids like this. I have given up trying to describe it to others as they just don't get it. Quite rightly most people can look at their children each morning and think of the wonderful things they could do that day. For me I look at mine and think how wonderful they are just for being there. I'm not sure if I'll ever quite reconcile myself with that.

On the other side they don't half put you through it!!! In the last 24hrs Jonah came very close to dying with me, alone togethor at home, and then was rushed to hospital following his first fit. (Is it a fit or not.. that is the great debate at the moment). In the meantime we are being introduced to the joys of diazepam to add to his collection of meds.

Neil said...

I don't envy you Ben I can imagine what you are going through. Thanks for being so open and honest. I think that guilt is a major factor and I will talk about it again but at the moment I don't think all the readers would be appreciate the whole truth. You are right this new life is rich with many different new experiences and it is never a good idea to dwell on the negatives for too long because it is too easy to go under. Thanks for your comment.

Neil said...

Thanks Sam. As always you put a good spin on it and I really appreciate your blog in blog. I guess we all struggle at times with our own personal thoughts and feelings but thankfully we seem to manage to come out the other side smiling.