With permission from Nicky Guthrie, I am reprinting most of a letter she sent to me. Nicky and her family live in Scotland; thousands of miles in distance from many of us, but close in heart and experience. I think most families can identify with her candid account in some aspect of our own relationship with others. She also gives sound advice which applies to any of our relationships.
I find the MSUD Newsletter a lifeline! I have never met anybody with children with MSUD, or indeed any other metabolic disease, and the information and experiences shared in the Newsletter, I find absolutely invaluable!
I have been trying to think of some way I could contribute something to the Newsletter, but I am not really sure that I can be of any help. It seems that our situation is just so different from most of the other people that read the Newsletter, that I'm not sure our experiences would be relevant to them. We have two children with MSUD; Laura, aged five, and Catherine, aged three. Laura, interestingly enough, has an almost identical early history to the boy, Nick Lovrin, featured in the last Newsletter. She was diagnosed late, at 14 months, and really should not have survived, as blood and skin tests showed her to be very severely affected indeed. She was badly delayed mentally and physically at the time of diagnosis, and we were told that she would be permanently brain damaged; but, miraculously, she had closed the gap between her and her peers by the age of three years, and is now above average intellectually. Catherine was diagnosed antenatally, and, despite many hospital admissions to correct metabolic imbalances (nine in seven months last year), is so far developing normally.
As you know, there are many different aspects to caring for a child with MSUD, and the area I have been pondering over lately has been relationships with other people; friends and the extended family. This is where we perhaps do not have much in common with most of your readers. Geographically we are very different, and perhaps the people involved are rather different. Perhaps I have a false view of Americans, and I know it must be wrong to lump all Americans together, but it does seem that you guys are generally more "open" people than we Scots, who are probably too private by half!
Anyway, I have found that we have felt a great deal of support from our friends, but that things have not always been so easy with the wider family. I thought it might be interesting to write about this. I have never heard anybody say this, and yet I am sure that other people must have experienced it too. It can make you feel so isolated and hurt, despite all the support you feel flooding through from your friends.
The first, and by far the most obvious area I have felt this, is from my sister-in-law, my brother's wife. (I write this knowing that they will never read it, and with the feeling that to share this experience may be helpful to other people who may find themselves in a similar position.)
I feel difficulties have arisen between our family and theirs for several reasons. The most important one is that their eldest child is nine months younger than our eldest child and their second child is four months younger than our second child. Because our children are just slightly older, and have a potentially very serious disorder, I think my sister-in-law must have felt, subconsciously, that all the attention (of relatives) was going to be focused on our children, and that theirs would be neglected. Of course, "normal" babies and very small children can be very stressful to look after, and parents of "normal" children have many worries too. I think that my sister-in-law felt that nobody would pay any attention to her worries and difficulties. We live only ten miles from them, but I had to spend so much time coaxing the children to take their special diets when they were tiny, I could not spend as much time with my brother's family as I would have liked.
As all parents with MSUD have done, we have been through some very difficult times. When our first child, Laura, was eighteen months old (not an easy age), and I had just been told that the child I was then carrying was also affected with MSUD (devastating news), I started getting messages from my sister-in-law to the effect that I cared about nobody but myself and my problems; I didn't care at all about her and her child. At the time this felt like the straw that would break the donkey's back. I was desperately hurt and upset by it, as I do care for them so much, and I spent many sleepless nights because of it.
The point I need to make here is that my sister-in-law is by no means a nasty person. She is a very kind, loving, generous person, who makes friends easily and is generally an open, welcoming sort of person. But she is also impulsive, and very subjective. She is not an objective person. What I now think must have happened is that she had started to resent the fact that we had a "special" child. She felt that her child should be considered "special" too, but was only ordinary. This was, and is, absolutely untrue, but as all our other relatives live a long way away from us, it was possible for this illusion to grow. When we were told our second child would be a "special" child, this may have, subconsciously, seemed even worse for her. Of course my brother, to whom I had previously been pretty close, spent a lot of time with his own family and very little with us. His wife's feelings towards us began to spread to him, though by no means to the same extent.
Again, I found this wildly hurtful, and felt powerless to dispel these illusions. The isolation and loneliness I felt when dealing with my two children with MSUD was greatly heightened because of it.
All four children are older now, and life is that much easier for all of us. Our relationship with their family is better than it was, but not ideal, and we lead pretty separate lives. I do not know if they know exactly what MSUD is.
If anyone else finds themselves in a similar position to this, I think there is only one course to take. Do not let any resentment build up within yourself against the other people. It will destroy you. You may find yourself hurt, but do not let yourself resent them. Even if the other people's feelings are subjective and untrue, you can understand why they have arisen, and if you can continue to show them care and love, then, hopefully, in time, their resentment will be dispelled. There is nothing to be gained by animosity, except more stress. You are too vulnerable.
I was four months pregnant when we were told that our second child had MSUD too. I phoned to tell my mother-in-law, who was on holiday in the States at the time, and to tell her we were keeping the child. She thought we should terminate, and her immediate reaction was, "Well, it's your child, and your decision!"
True enough, but it was the way she said it! She had told me previously that she thought we should not have another child with MSUD. She said she would like her son to have the experience of bringing up a "normal" child. That was her immediate reaction, but she phoned us a couple of days later to say that, of course, she would support us to the full, whatever our decision. I must say that she has.
Having a "special" child within the family network is not an easy business for so many different reasons. Perhaps it is more difficult for the "in-laws" because they feel slightly on the outskirts of that particular family. The same expectations are perhaps not the same with friends, which is possibly why difficulties do not arise so often with them.
A letter from Scotland