Diagnosed-how to tell my kids?!

Status
Not open for further replies.

fallinggirl

Active member
Joined
Sep 21, 2012
Messages
64
Reason
PALS
Diagnosis
06/2013
Country
US
State
Oregon
City
Medford
I have been diagnosed with this monster, (at MAYO) this week. Now how do I tell my kids?! They are 14, 10 and 8. To make matters worse, my 10 year old is mentally 4. He is the one who is seemingly always asking me what's wrong. In fact, my husband said that every day while we've been at Mayo, when on the phone, our son would ask, "do you know anything yet?".

What do you suggest? I suspected and have of course many emotions going through me right now. I have 1,000 things going through my own head.. how do I tell them?
 
If I were you I would tell them just the simple basics. I would work on getting my emotions under control first. Kids can pick up on the smallest emotions. You need to grieve and go through the process of wrapping your head around it and make a plan. Take care of yourself first.

I am sure others will chime in and may even know of some childrens books that deal with illness in a parent. I have found that when my children were young the simple direct answers were the best. I wish you peace.
 
I am so sorry. I read your old threads and it sounds like a long and confusing journey. There are some other threads on this so search around.
My niece was 9 when my sister was diagnosed. She is old for her age. My sister told her she had a disease called ALS that affected her muscles and it was not going to get better but she was going to try to do all she could to stay healthy destress eat well etc. my niece immediately asked " are you going to die?" I think you have to take your cues from your children. It may be you should tell them separately but that may be hard as they are expecting answers when you return certainly a 14 year old and a 4 year old will process this very differently. You know your children best. I would think a lot about how I was going to answer their questions in advance. This is probably the hardest thing you have to do
Nikki
 
Last edited:
I had the same problem with my 11 year old grandson, I did not give details, told him that I was sick and had to take care of myself and left it at that. He did not have a lot of questions.
 
Oh I hate this! I hate this, I hate this! I'm so so sorry.

Your head is busy no doubt, but I can tell you assuredly, perspective and joy in every day things will return after a time. I called the interim time my " shock fog".

I'm certain the ALS clinic will advise you, but I would also urge you to check out ALS Canada inter net site. They have great downloadable resources for dealing with children and teenagers.

In addition, there's a recently published book by Jodi O'Donnell-Ames titled " The Stars that shine" . This book is written specifically for children facing ALS in their family; it's available on amazon. In addition, if you have access to face book, and you are so inclined, please check out "hope loves company" - this is Jodi's foundation and resource for families with young children affected by ALS. She is tireless worker in this area.

We are here for you! You are NOT alone.
 
I hate ALS!

My post went to moderation. I had provided some informative sites for help with explaining this to your children. If the post does not show up, I will send you the information via your visitor page.

Breathe!
 
Like the others have said, you have to take care of yourself first. Remember in this age of the internet, they can find out everything once you say that you have ALS. So it is best when you tell them give them enough information and tell them if they read anything about it on the 'net, you all can talk about.
 
I think it's a good idea to tell them the truth. You don't have to get in to all the details yet. You and they will go through it step at a time. Children know more than they let on. So sorry you're all going through this. Yasmin.
 
My moderated post finally approved. Trust you will like " Hope loves company"
 
Thanks everyone! It went better than I expected, actually. However, my mentally ill child (4 developmentally) was heartbroken, crying, crying crying. My 14 year old wouldn't leave me for a moment... in fact, was waiting for me outside of the bathroom (tried to come in). I explained I wasn't dying just going to the bathroom, so it was safe to let me go. My 8 year old son has become extra whiny over night. I am back at Mayo actually right now as I post this (in a hotel right now), but we brought our 14 year old with us. She begged. She needed it I think.
This is so hard. Thanks for being there.
 
So sorry, one thing about this disease is that the people who love you show it, I feel real bad for your kids, I'm glad I'm older, my two sons are grown and it still his them hard. Some of my other family members refuse to believe that I have bulbar palsey and keep saying I need a second opinion, I can't go through that again.
 
I am so sorry for your sorrow. I would always interject hope with children. Tell them that there could be a cure soon. Some of the smartest people are working to make that happen. It has been a mammoth task. Act as normal as possible, of not for them, for your caregiver. I took care of my lovely wife of 39 yrs. for over two years, and the greatest gift she gave me was passive--she never complained.
 
Status
Not open for further replies.
Back
Top