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Talking to the kids - follow up and thank you!

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CoachMeg

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Hello my dear friends. I hope all of you had a wonderful week last week. I apologize for being absent, but you were all in my prayers and on my heart.

I want to thank you all so much for your words of encouragement and suggestions for talking with our kids. After my husband's doctor's appointment Friday the 18th, it became apparent that this was in fact, the right time.

We sat them down on Sunday the 20th and told them the name of the disease and the prognosis. There were many tears shed and it was so hard. But it was also so right. At no point in time did I get the feeling we were making a mistake. We were able to answer whatever questions came up and continued to answer them throughout the week. My 6 year old asked really good questions about whether or not you can catch it and whether it was like cancer. My son kind of got quiet. But, that is to be expected. We believe that he has known on some level for awhile that things were not going to get better.

The blessing of the week was being surrounded by family. We had 25 people on Wednesday and 15 people on Saturday for Thanksgivings. The kids got to go sledding one day with their cousins, too. And the fish hatchery too with Grandpa. They know that we are not in this alone and that we have many people who love and support us.

I also took the step to notify their respective teachers, just in case something comes up at school. They have both been wonderful too.

Thank you again for being a wonderful sounding board and sharing your words of love and wisdom.
Love and light
Meg
 

momap53

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So glad that it went well.
 

HelenL

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Meg, though it really stinks to have to talk to your kids about this stuff, you must feel a giant weight off of your shoulders that they won't find out the wrong way, from someone else.
Love you girl!
 

susanf

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Glad it went well Meg. It's tough telling the kids but now you'll feel better that it's in the open
 

CGAR

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Hi Meg,
I have a 6 year old and a 16 year old.

We had a very close family friend pass away in a vehicle accident at 26 years of age a couple of years ago.

I explained to my kids that when "Uncle Mike" passed away, it was a tragic accident, we were all sad, and it was just his time. Sadly, he wasn't able to say "Good-bye"

I went on to say that I'm lucky.
I'm lucky that I get to be around long enough to tell them how much I love them, and even though eventually I won't be able to move or talk, as long as I am here, I will always be able to love.

Why does it take a tragic thing like ALS to teach us how we should have been treating people all along.

I'll share something I put on my Facebook page when I got my diagnosis:

Every day you wake up is a good day,
Every day you can sit up and put your feet on the ground is a great day,
Every day you can walk to the kitchen, make a coffee and feed the kids is an incredible day,
Every day you can tell your wife and loved ones how much they mean to you is a perfect day.
Everyday is a gift, a miracle.
I for one will never forget what each and every day means to me."

I hope that hope and love will help with your family as it has with mine.

Cheers,
Casey
 

Alyoop

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So glad it went well and you have such a good family with tons of support. It must make such a difference. Hugs to you Meg.
Aly
 

rictak in IA

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So happy for you, (getting that talk taken care of) and more than a little envious of your courage. We have a 7 yr old daughter, who is obviously aware that somthing is up, but mostly just in a fun teasing sort of way, calling mom slowpoke, or trying to get in there and help when I am helping her mom out of a chair. I know we will have to talk it all out sooner than later, but I'm really dreading it. We are leaving Sat. for a week in FL (Disney, Sea World and all of that), and it will be My wifes first experiance with an electric chair, and of course, our daughters first time seeing her in one as well. Not planning to bring any of it up on vacation, but some of our experiances down there might spark a conversation, ready or not.
 

CoachMeg

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Rictak - It is a very difficult conversation and one that was 9 months in the making. I will share what we did only as a guide. We spoke with a child counselor first, back in February, when the initial diagnosis was made. She advised us to only give what we felt the kids could handle. But to not ever lie if they had questions. We were fortunate that the kids took what we said at face value and never questioned it. We simply told them that Daddy had a disease that made his muscles weak and not work right. We told them that eventually he would need a wheel chair that would allow him to keep up with us and stay active. We then went on a whirlwind Spring and Summer adventure of making as many trips and family memories as we could. And it was sooo worth it.

As a side note, our trip to Disneyland included and electric scooter and it was a godsend. We now affectionately call my husband the Pack Mule. ;)

My husband's disease appears to be fairly swift in progression. Which is why we found ourselves having the talk now.

I wish you all the best and send prayers to you and your family.
Love and light
Meg
 

TedH5

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Very glad that the talk went well and that your Disney advenure was fun!

Talking to the kids is definitely tough. Although this may sound odd, I think it is a little harder on the parents then the kids. Anyway we were honest but appropriate considering we have 3 different ages. (13, 11, 7) So the older ones we shared with more then others.

You will also find they cope in their own way. My son who is the oldest found some info on ALS on the internet. He came to me and said "Dad is says that 80% of the people with ALS die within 5 years, is that true?" Of course I told hi yes and was concerned about his reaction. Well he suprised me and said well your Dr. told you that your progression is on the slower side right? Again I said yes and that's when he suprised me with his grown up and mature outlook...he said "well then you will be in the 20%." He did not ask, he declared it. I smiled and happily agreed with him. Does that make it easier for any of us are we just fooling ourselves, who knows but I think for my sign it made it easier for him to cope mentally and emotionally. That made me happy because like all of you the last the last thing I desire to be is the source of my families pain. In addition from the beginning I definitely do not want to be grieved for while I am still alive!
 

LizT

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Ted, sounds like your boy is just like you! Thats some good parenting, right there...!
 

TedH5

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Thank you Liz, you are too kind.
 

LizT

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Ted- one can never be too kind... hehehe.... but I thank you!
 

hn7609

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Thanks for posting on this subject. I have been putting off having the talk with my children 11 & 13. They obviously know that something is wrong as I can barely walk anymore. We need to get it done. Just curious........did you use the term ALS? I know that my nerdy kids will be searching on the internet if I were to give a name to my disease. I'd hate for them to have to read about it on their own but I also dread having to tell them that I'll most likely be gone in a few years.
 

notme

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It's hard to explain any serious illness to kids--just remember that they have vivid imaginations--so they can be thinking of even worse things and feel betrayed if they aren't told.

And remember to tell them that the 'stats' are generalities. Tell them about the people that LIVE with ALS--it may help. And always talk to the school counselors and let them know so they can be on the lookout for signs of depression or outbursts of behavior that aren't acceptable.

I wish this forum had a subsection that kids could access and talk with one another--I'd suggest to parents to choose nick names that their children don't know.

And always encourage kids to talk about how they feel--holding things in is as bad for kids as it is for adults--if not more so. For those able--also take advantage of voice banking--for those special moments and perhaps a favorite book that they can listen to...I'd love to have had something like this when I lost my mother.

Even young children pick things up. rcharlton is a great example of how well some kids can handle this.

Meg--my prayers are with you and your family.

Oh--and for those trips to Disney, etc--take your own chairs and scooters if you have them--they charge outlandish fees for rentals!
 

CoachMeg

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02/2011
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We did name the disease. My son is extremely bright, reads everything he can get his hands on, and knows how to research. So, we gave them the name and then told them what was happening. Our hope and efforts will be focused and maintaining that honesty. If he chooses to research, he will have more questions, for sure. But, we are ready to answer them.

I don't know how far your disease has progressed, but we have been living with this since February and his progression has been swift.

Blessings to you and I wish you all the best.
Meg
 
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