Hi, as some of you know i have a son with a very rare condition. I know of another 8ish in the world although there are officaily more (about 20ish). I talk to a mum from america and we are really good email buddies. her son is 6mths older than mine and we rejoice when they ahve good days and cry over email when they are ill. Harrys story is on kidsepilepsy.com and i was recently contacted by another dad, whose son is 8mths old. In his email he asked me a list of questions such as 'what meds have worked for harry?(none), what is his development like now he is 3yrs old' (at about an 8 week old baby), what are his seizures like', (he has up to 150 per day on a bad day), can he hold his head up ' (no). I sent these answers in a really friendly email and thought no more of it. At the same time they sent me a link to their sons web site and the other day i decided to have a look. The first thing i did was go the guest book and leave a nice message, then i read the journals and smiled when i read this comment;
"Also - we have made contact with Denise, a mother in England who has a son with the same condition as Daniel. Her son Harry is almost 3 yo (same age as our Eleanor). His condition is as severe as Daniel's. He is on a different med mix, but with the same lack of success. We have also been informed of another 3 cases of Daniel's condition - none of them in Australia."
Further down though i read this and was really shocked and upset:
"I have responded differently. I am angry, but don't know who or what to be angry at. I'm angry at the doctors for not knowing what to do. I'm angry at Denise (Harry's Mum) for not being able to give us hope. I am angry at Beth for wanting to be hopeful."
would anyone else have been upset by this. Mostly i am upset because the rest of the world can read this and they have no idea of the content of my email and how friendly and supportive it was. i felt i needed to send something to him and emailed the following
"I have thought seriously before writing this email, but felt that i really needed to respond to a comment on your website The comment is contained in the following synopsis that i have taken the liberty of 'cutting and pasting' directly from the site:
"I have responded differently. I am angry, but don't know who or what to be angry at. I'm angry at the doctors for not knowing what to do. I'm angry at Denise (Harry's Mum) for not being able to give us hope. I am angry at Beth for wanting to be hopeful. I'm angry at myself for not allowing me to have hope. None of this anger is useful...some of it isn't even justified"
With hindsight i realise that i approaced the website the wrong way. I wrote a lovely comment in your guest book and then read the journals and the above comment. My husband and i feel quite upset about this as our intent was never to 'make you angry'. You have posted this comment for the whole of the world to see, with no thought as to how this would make us feel. You approaced us and asked us questions, to which we responded in a open and honest manner, we now feel violated. Would you have preffered it if we would have told you untruths? Should we perhaps have told you that Harry had suddenly got up that morning, fully recovered and now attending mainstream school?
What you have to remember is that we have faced this situation now for a lot longer than you have, and that you are not the only people who feel angry, hurt and also a sense of grief for the child we should have had. However, where we differ from you is that we would never displace this anger onto another parent who is suffering the same as us. At least you are in a position where you have another person (me) who you have been able to ask questions. This is a luxury that we were never afforded in the beginning.
I feel blessed that i made contact with coopers mum and dad and that we have been able to support each other, although they are in america. We are able to rejoice with each other on the good days, and mutually support each other on the days that have been so bad that we believed it couldnt get any worse. Perhaps if you are not ready to face the truth then you shouldnt ask.
From reading your journals, it would seem that we are totally different in the way that we approach this illness. We are very positive people, and although we know that Harry will have a short life expectancy, we are not even contemplating his funeral, never mind arranging it. This is not because we are in denial, it is because 'you are a long time dead'. We make the most of Harrys time with us. He could be with us till he is 7 or 15yrs old, maybe even 20. Harry is a part of the family and as such has accompanied us on holdiays to New york, Florida, France, Greece, Germany and spain (we even travelled 1800 miles through France, switzerland and Germany by car last year). Yes he has been ill while we where there, but we refuse to sit at home waiting for him to die. He is tube fed but that can be done anywhere. He has tons of seizures per day, but he might as well have them in disney land than in cheshire. We have gone out with him on a daily basis since he was just weeks old. We have both continued to work and and take turn eachs at the hospital appointments etc and life goes on as usual for our other children. We are currently just planning our next little jaunt to visit coopers parents in Atlanta, then travelling with them up to their mums house in memphis. So...the point of this last paragraph is to high light how i fail to understand how i did not give you hope. The questions you asked me where not questions with which i could give you hope. You asked about development, Harry hasnt developed. You asked about meds, they havent worked, you asked about seizures, he has tons etc etc. If you would have asked about living with Harry day to day, getting on with life etc, you may have recieved more hope. Harry is not going to recover, there is no miracle out there, but he has a lovely little life that is full to the brim and we feel so so blessed to have him and we have all learnt so much from him.
I am truly sorry if by speaking the truth i made you angry, and i will obviously have to be more guarded with what i write to 'new friends' in the future. I hope that you enjoy Daniel as much as we enjoy Harry. Please do not feel sorry for Harry in any way, his life is over flowing with hope, we just have bad days when friends are needed to sound off to.
What does everyone think, was i too harsh in my last email.