Hi there

I am wondering if anyone has any books or resources or anything at all that might help me. We've just discovered that my son has a terminal illness and will die. We don't know how long we have and at the moment he is 'normal'.
How do we go about telling our almost 6 year old that her younger brother is going to die? We are not religious so can't go down the heaven road with her. I have started conversations about death with her in a casual off hand way but don't know how to go that step further and tell her the reality of her situation. We will be seeing a social worker and counsellors at some point but I would like some ideas from others for me to process and think about before seeing them

thank you

I have no advice but wanted to give you a big hug. I am so sorry that you have from the sounds of it a horrendus road to travel.

I am so sorry to hear about your son. I hope someone can come in and help with some answers for you.

I am so sorry to hear about your son. I hope someone can come in and help with some answers for you.

Lyra, I am so sorry to read this.

Much love to you all. I wish I had the perfect advice for you. I hope knowing that we are all here on EB thinking of you helps in a little way.

Oh my I have no words of advice, but just wanted to say how very sorry I am that you and your family are going through this.

Another with no advice, but plenty of well wishes. It sounds like you will have a very rough journey coming up. I wish you all the strength you require to make it through.

My thoughts are and will continue to be with you over the coming days, weeks and months.

I hope someone here can help you....

I'm really sorry to hear that your son is so sick Lyra.
I have no advice, but wanted to let you know that I'm thinking of you and your family.

I am so sorry. I hope you get more healthy and fun filled years with your son than you are anticipating.

Jenny Angel is a nice book for children about death.

I found this resource http://www.kidsgrowth.com/resources/articledetail.cfm?id=76
It may be of some help.

Perhaps Canteen or Ronald McDonald house may have some resources.

Sending you love
Anna

I am so sad to hear your news, I'm sorry don't have any advise but wanted to send you my hugs, love & strength. You & your family will be in my heart & prayers.

Hi Lyra

So sorry to hear you have to face this terrible situation.

Our DS was only 2.5, but we simply told him his sister was very sick and wasn't going to get better. We made sure he saw her in hospital so he could appreciate and connect what was happening with what we were telling him.

Your DD is a few years older, so may need more than this. If you are not completely atheist, maybe you can suggest he will be going to heaven, or somewhere in the sky where her brother won't hurt anymore? I feel that at that age, they don't really need to face the harsh reality and finality of death. But at the end of the day, you must be comfortable with your explanation.

My DS now looks to the night sky and believes his sister is in the moon and stars. We don't mention heaven anymore.


Again, I'm sorry your journey will not be a happy one.


xo

I'm so sorry, I can't imagine what this must be like for your family.

I'd keep an eye out for some picture books, there are books around that explain death and dieing to young children. I think I'd be inclined to wait until you have spoken to the social worker too, she may have some recommendations, or even some books you can borrow.

Another thing that might help is making a family story book with your kids. Use photos and precious bits and pieces to fill a book with memories and stories that your children (and you) can look at when times get tough. Update it as you go, it doesn't need to be just happy stories, whatever family members feel is important to include as part of their story.

Thanks so much everyone

*anna* that link was really helpful and I have bookmarked it for further reading

Mummy Em the idea of a book sounds like a wonderful thing to do. I will certainly think about that too

Being non religious ourselves we find the what happens afterwards question the hardest to help them with. We spoke about the body going bak into the earth to make the trees and flowers grow and making the planet beautiful. It was a nice way for my kids to think of it as now when they talk about people/pets we have lost they talk about how they are gone but they are still here making our word a beautiful place.

HTH

The social workers at kids hospitals unfortunately have a lot of experience at dealing with this and would have appropriate suggestions for how to communicate this best to siblings age appropriately. They also have experience in how you communicate this with the child that is ill if they are over a certain age - not sure if this is relevant to your situation. You are still the parent and you have the say in how and what the child is told but you will find they provide good guidance in this area as they deal with it day in and day out.

I am really sorry you are going through this - it is so very unfair.

I am very sorry to hear of your news. I do hope you find a good way to explain to your DD what is happening. to your DS.

I wouldn't rush into telling them that he is going to die, as they will expect it to be happening soon. I'd concentrate on dealing with the here and now, so for now tell her he has seen the Dr's who have told you what is wrong and that they will do all they can to help him. As he regresses remind them of what is wrong, and that even though you and the Drs are doing your best you can't make him better. When it gets closer to the time, so maybe in a couple of years then start to talk about death.
Always be honest with them, but don't give more infomation than they can handle, once the kids start to spend more time around hospitals they will see more sick and disabled kids, which will give you an opportunity to talk to them about it.
My kids know that Den is sick, the older ones know that he will die, but not the younger one. We were told 8 yrs ago that he had a malignant condition, but atm he is going well, and the kids can see looking at him how many problems he has.
I actually think you need to concentrate on how you are going to cope with what you are going to encounter in the next few years, by joining a support group,researching funding for equipment and respite, organising finances, house suitability etc. You need to organise a back up plan for emergencies, who's going to be available to baby sit or pet sit if you need to stay at the hospital for long periods.

Margaret

I am so sorry

Whilst not a sibling, when a very close family member was terminal and eventually passed, we used the very sick scenario but be careful that they do not think (as my DD1 then 6 did) that anyone who gets quite sick is going to die. Also you may need to stretch the truth a bit and tell them that you and DP will always be around, for the time being anyway.

I can not imagine what you are going through. My only wish is that the time you allhave left is the most wonderful, magical time the universe can offer.

ambwrose I know exactly what you are saying but my daughter is pretty clued in with things and I suspect her first question will be 'is he going to die?' and I don't want to fob her off. Thanks for the suggestions also of respite, finances etc etc. We are pretty much thinking about things already. We had planned on doing house renovations this year but it got delayed for lots of reasons. I am glad now because that has freed up a bit of finance for us. Also, it means that the way we renovate is going to be slightly different now because we are going to have to think about mobility for our boy

thanks again everyone, I am reading and appreciating all your thoughts and ideas even if I am not responding to them personally

Lyra

As Bryce was our only child at the time of diagnosis we never had to think about it- but now, with DS2 (4) and DD (20mths) we have had to touch on the subject. Bryce is almost 10 and time for him has almost run out. Hamish does get upset when I mention it. We are not overly religious but we speak of Jesus and Heaven and a place better than this. We say things like "in Heaven Bryce will be free again to run and jump and play". It's hard keeping it together through these conversations and I usually end up in such a mess that Hamish will give me a hug.

If you get in touch with Vanessa at some stage she can send you a book- I think it's called 'Dragonflies and Waterbugs" or something to this effect (we only just got our copy the other week) and it explains death to children in a very easy and non-religious understandable way.

I would hope, in my experience of this dreaded illness, that your beautiful boy has some years to live and perhaps talking to your DD about the changes he is going through, as opposed to what will happen to him at the end, may prove more helpful. However, if she asks (and she probably will) I think it is good to be honest. But you could say something like "yes he is going to die but he has lots of cuddles to give us now and we have lots of things to do yet and we have to take care of him".

I want you to know that this weekend I have been feeling very sad for you, your DS and your family. I don't know how you are feeling with having to think about this for your eldest- I have heard from other families with older siblings how hard it actually is- as the siblings are close and play together (and fight together!). When Hamish was born he only knew Bryce for what he was- and as Bryce has gotten worse, Hamish has just 'grown' with him (for lack of a better word). Bryce, as he is now, is most of what Hamish knows. I find it sad that Hamish will never know who his brother was- and what he was like at the same age. When I show pictures of Bryce to Hamish though, he happily accepts them, even though he has never witnessed Bryce walking or talking or eating . It's strange really what children 'accept' and how they process things.

When you get the chance to get in touch with other Batten's families there are many who have had older siblings who could help you through this journey.

I am sorry you are having to think of this. I am sorry that you have been given this sh*t diagnosis. But I am praying for you all. And something I have always been told to do is- Believe.

xxx

ps- sorry, I am not stalking you- I saw this in recent topics!!

Thoughts are with you.

Has your child been referred to the palliative care services? They usually are a good resource with social workers etc that are trained in this area.

Lyra,my heart goes out to you and your family,I cannot even begin to imagine what you are going through.

I found a link on Amazon to the book that Bryce'sMummy referred to

http://www.amazon.com/Water-Bugs-Dragonfli.../ref=pd_sim_b_2

I wish you strength,courage and love on your difficult journey

I am so sorry.

There is a book shop in Melbourne called Open Leaves. They have a website that you can purchase online from, they have many books that help to explain death to little ones.

Hope that you can find a book that is helpful to you and your daughter.

http://www.openleaves.com.au/

Lyra ... we spoke with our children of how Ruby's heart was going to be born tired. That there was a chance that over time, as she got older and more tired, her heart would become so tired that it needed to stop just like a battery in a toy after it's energy had run down- it would still be there but the power to make it work would have gone. We spoke of how as a battery gets flat, the noise a toy makes gets distorted and slower which was what Ruby's body was going to do, get slower and weaker.

We spoke of how we have memories of those we love and hold close to our hearts - memories that will never leave us. We spoke of how it is hard to live with memories alone but that the person we are remembering smiles at us from where they went every time we thought of them and smiled.

Explaining this has no exact method, wording or terminology. It is something that can be done in stages or all at once depending on how you feel your little one is coping with the news. There may be many questions - no necessarily immediately, they could start after your child has had time to mull their thoughts over quietly. Try not to let their questions shock you - their understanding is usually simplistic yet accurate and their honesty, brutal.

Recently, we have been a part of telling my two neices that their Mum is gravely ill with cancer. We were surprised at their reactions. The eldest, who usually talks constantly was very quiet and thoughtful - we thought she would be very distressed, but she has taken it in her stride. The youngest asked outright if her Mum had the "dying sick" and when told, yes, was content with that as enough explaination for now. Both have asked questions since, but they are a lot more peaceful about the thought than we expected.

I hate that you are having to ponder these things - it is something that no parent should ever have to do. I send you gentle wishes for the days, months and years ahead and the offer of an ear if ever you should need one ...

I am sorry that you have to go through this. I am sending lots of hugs to you and your family.

You may find it useful to go and have a talk with a youth services/children's librarian at the local library. Often there are lists of picture books and junior fiction that can help explain different issues to children. Many public libraries have access to the Magpies database which is solely for children's books and can be searched on themes and age groups. I have used this database several times for find books on illness and death. My advice to any parent when looking for books on difficult topics is to read the books first before reading them with the children as they may cover topics you are not ready to yet. Another section of the library to have a look at is the junior non fiction section around the 155.9 roughly, it is the section about death and other issues and emotions. Many of the books are aimed at different ages so hopefully there is one that would be appropriate for you and your daughter. Several years ago there was a series, 'Saying goodbye to a ...' about children and death, and each book looked at a different relationship such as grandparents, siblings, parents, pets and friends. The series was by Nicola Edwards.

I hope that this helps and isn't making things worse for you

My heart breaks for you.

If you use the link in my signature and look for a blog post called 'Talking to kids about death', there is a very short story for kids your daughter's age which might be a starting point. I wrote it for my preschool class and I made sure it wasn't pushing any particular religious barrow. You are very welcome to use it if you think it will help; it might even just give you some ideas on what to say.

hugs.

OP, i am so sorry you are facing the death of your son. Like other PP's my heart is breaking for you.

I don't know where you are located but Paradise Kids are fantastic, even if you're not in the area they still may be able to help.

We used them when our DD's needed some assistance with grief.

Paradise Kids

Kirsten

im so sorry to hear..
i unfortunately do not have any sound advice to give but i just want to give you and your family

stay strong and know you and your family will be in our prayers..

I am so sorry Lyra. No words can make it any better.

We started on "He is very sick" - Which he was. At that time we didn't know he was terminal.

From there, we explained that he was sick in a way that Doctors can't make any better. When DD1 asked if he will die - a simple answer was needed "yes" - with tears in my eyes, and only just holding myself together.

Sometimes, we over think things a little, and I found this was more so the case with our girls... we tried so hard to work out how to say it all... when in the end, just answering their questions as they came solved many of our (anxious) issues.

Emotion is all part and parcel of it. Sometimes your DD will cry - you don't need to stay strong for her - cry with her (if you need that release at that time). Don't be afraid to say "I can't explain that sweetheart - sometimes these things just happen. But we can try and find out together."

There is much more I would share, but some of it can be a little confronting.

My heart goes out to you. If there is ANYTHING I can do - just say the word.