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rosiemama Posts: 3363
A good friend's baby has just been diagnosed with a very rare condition which means that LO will suffer from various health problems and will very likely have some degree of learning disability. They have just found out and are understandably devastated, particularly her husband. They also have an older child. I've sent her a wee message and seen her yesterday briefly for the first time since they found out. Words don't seem to cut it and I want to do something for her, but I don't want her to feel like I am pitying her, especially since my DD is the same age. She is carrying a lot of the burden as her DH really isn't coping with it. I can't imagine what they are going through. I live a fair bit away and although I have offered to mind her older child anytime, it probably isn't practical. What else can I do to help her?
tilsun Posts: 4506
How old is her baby? Did they see this coming, discuss it with you before the diagnosis? Their own openness about what is happening will really guide what you can and can't do. My daughtr was diagnosed with down syndrome at birth. I told everyone straight away and mention it on and off as I want people to know that I am totally open to discussing it and how it may affect our lives. But I tend to frame things positively as I'd die if I thought people pitied me. I like when people just listen, not try to diminish my fears if I mention them. I'm happy to answer questions but naturally prefer that people bear in mind its my beloved child we're discussing. If the baby is very young then all the usual doting on a small baby is needed. If older then reassurance that she is the same baby she was before the diagnosis. Everyone copes differently and that in itself can be a stress on a marriage. Maybe some babysitting so she and her hubby can have time together to chat or just kick back would be good? My OH took up the gym around then as he needed time out with no talking. I used the time he was gone to have family or friends over with wine and non-stop chats. Maybe her OH could use some time for a hobby knowing you are there to keep his wife company. How much practical help they need may vary greatly but everyone needs a good friend and you really sound like one. I hope it all works out well for them. I can honestly say the early days, the 'finding out' was the worst part, life since then has been wonderful and I hope one day your friends will look back and say the same.
rosiemama Posts: 3363
Thanks for your reply, sorry I have been on hols this week and only just seen it there now. Their LO is very young (3 months). They just had the diagnosis confirmed last week although suspected something was wrong from day one. She has been very open talking about it and seems to be dealing with it quite well to be fair. Her DH isn't coping well though and her other child is still too young to understand, so it just seems that she is carrying all the burden. I suppose we can just try and be there for her as much as we can if she needs us. It won't be hard to dote on LO as she is such a little cutie. I think she is going to be spoiled by everyone :lvs I know they will be fine in the long run but it is awful to see them go through such a hard time right now. Thanks again x
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