Mulling things over...

Well, this week has not been quite so hectic as previous ones. I actually managed a day in the BLISS office yesterday and had a most successful meeting with a group of doctors and nurses who are overseeing the research I am doing (won't go into this at lengths here!). When I arrived at the office, I was told by my manger that the boss wants to send me off to America as they are alredy implementing programmes of care for premature babies that we are exploring introducing and evaluating over here. My immediate reaction was excitment, followed by that heavy sense of "yes but how on earth could I work everything out that I would be leaving behind?" After a chat with Mum I realised that this is exactly what the hospice is here for and, not only would this trip be of huge importance to my work, it would do me a huge amount of good personally too. So, we can work something else and I will be telling them, yes! We have not yet left William at the hospice alone, I think I have always hoped this condition is somewhat temporary and we can do all the things we want to later down the line. However, with the addition now of wheelchairs and mobility problems, it is high time the girls and I looked to do some of the things we miss, like rock climbing (indoor with full safety kit!), rambling and camping. We will look to go on some kind of family adventure weekend to incorporate all these things sometime in the Spring.

It is interesting to mull things over and compare the impact of the path our life has taken on Paul and I. It is a similar pattern among other Mums I have spoken to as well. Mums seem to undergo the biggest changes in life. I have had to give up full time work and cope with a much smaller income. This has been a positive thing in many ways as I am there for all 3 children much more than I used to be and I am the one at the school gates in the afternoon to hear all their news as they come out of school. Friends is another interesting issue here. Paul's friendship group remains pretty much unchanged. However, alongside old friends, I have a huge set of new ones who I have met in relation to some aspect of my journey with William. Some at the hospice and other groups we are involved with, some from hospitals, others from message boards and still others just by word of mouth through various networks because we share something in common. It is often these new friends who I turn to the most for support, to share news and feelings, to discuss how I feel about the latest diagnositic theory or piece of equipment... When Paul had his accident, it was these friends who I knew would understand my context and how I felt about it all. There is an instant bond and this makes new friendships very close very quickly. This seems to be something that women in our situation seek more than men. However, at times, I can feel very excluded from the life we had before and that Paul still enjoys. Paul often gets invitations to events such as weddings and parties but the logistics of bringing the children, especially William with the restraints of TPN etc, it inevitably means that I have to stay home. Sometimes, I get the feeling people don't invite you to things when you are in this position because they just don't see how the logistics will work. It can get very isolating - another reason why the new friendships are so important. I have had this conversation with so many other Mums who all experience the same.

Another thing I have been mulling over is they different ranges of conditions and disease progression patterns. Since we were told that William's condition may turn out to be a degenerative one, I have wondered to myself what is harder - to have a child born with very limited physical ability that remains at a static level or to watch a child loose his or her function over a period of time? The first may enable you to get used to things but you never have the memories of that child running around and doing things. With a degenerative condition, you have to endure the agony of watching your child deteriorate in front of you, however, you have precious and happy memories of years that went by before. The saddest thing I have seen is a child who was OK but who had a tragic accident where a fall led to a blood clot on the brain. I think that is the hardest situation of all, suddenly, just like that a well child becoming profoundly disabled. Of course, this can happen to anyone at any time. This is why some disabled people in America term able bodied people as "currently able bodied" . This is why we need to enjoy every second with all our children and this weekend we are off to the hospice again to do just that!