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Telling older siblings about SMA1 - how do they cope? |
Our second son has just been diagnosed with SMA1 at age 3 months. We are completely devastated by the news and are really anxious about how his 6 year old 'big bro' is going to handle the news, the decline and eventual loss of his dearest and most adored 'little bro'. We would really appreciate hearing about other people's experiences in telling older siblings - esp. at what stage they told the sibling and how they coped with the illness on a day-to-day basis.
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| Posted: Thu Mar 11, 2004 10:26 am |
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Re: Telling older siblings about SMA1 - how do they cope? |
Hi Catherine
A number of our Contact Network have been in the same position as you and I am sure they would be very happy to talk to you about it.
Give us a ring her e at the office if you would like to be put in touch.
Carol |
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Re: Re: Telling older siblings about SMA1 - how do they cope? |
Hi - we lost our second child, Joanna, to SMA Type I in 1999 when she almost nine months old. At the time we had an older daughter, Rhianna, who was then about two-and-a-half. They too were very close and Rhianna adored Joanna, and we made the decision to make sure that Rhianna was involved in everything, that she would not be shut out of what was happening and left wondering what was going on. We found that at that age she was very matter-of-fact about everything and seemed to just accept the situation. We didn't tell her in so many words that Joanna was dying, but neither did we hide anything from her or evade her questions.
We let them spend as much time together as possible, Rhianna went along to appointments and we took them for days out as often as possible to squeeze as much into the time we had as we could. Joanna only spent two days in hospital and we spent a lot of time at our local children's hospice, where we could all be together as a family.
When Joanna passed away, we were at the children's hospice and Rhianna was there with us. As well as supporting her, she was a tower of strength to us in return.
It's difficult to go into feelings here, but we feel that we did the right thing in not 'protecting' (as some people might term it) her from what was happening. She has grown into a happy seven-year-old, sensitive and balanced. She now has a younger brother and sister (following CVS tests which were clear, fortunately), and she adores them. Joanna is still a large part of Rhianna's life, she remembers her and talks about her even now.
As we say, there's a lot to put in here and this is just skimming the surface, if you would like to telephone us we'd be happy to answer any questions and share our experiences with you. The JTSMA office has our number.
Yours,
Paul & Judith Pitcher-Bridel. |
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Re: Re: Telling older siblings about SMA1 - how do they cope? |
| My name is rebecca. Our little boy George died in February 2002 aged 6 months. His older brother Josh was 5 years old when george died. In september 2001 when george was 3 months old we were told george had sma 1, josh had just had his fifth birthday in july. We didn't want to worry josh, so we told him george was very poorly, but we didn't tell josh he was going to die. I didn't want josh to be frightened of george. josh would play with george all the time, and george loved josh, his eyes would light up when josh came into the room. i didn't want to take that away from josh, as josh is a bit of a worrier, i didn't want him to worry that george was going to die. the night before george died we new it was going to be soon, we were at a hospice where we went alot. we told josh that night that george was going to die, it was a very painful thing to do, but we felt it was the best, so josh new what was happening. that night he died in his sleep, in the morning josh asked if george had died, when we told him he cried but he was ok. we asked if he wanted to say goodbye, as george was in a special room, it looked the same but was just cold. he wanted to go and see george, josh was fine. having josh gave us the strength to carry on, we still had to get up every morning and carry on for josh. two years later it still makes me cry writing about our story but we have a happy ending, i got pregnant the month after george died and the cvs was fine, so josh has another brother ethan. Josh talks about george alot, there are pictures everwhere and we watch videos of george. if ever you want to talk please call anytime. |
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| Mon Mar 29, 2004 11:56 am |
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