How to handle the questions from your children??

[Sheri817]

Im quite sure that im going to have to have the decompression surgery. Its not scheduled yet, but symptoms are getting worse and its hard to handle. I finally told my children about the surgery(son 18, dd 13, son 10) because I think it's my only option at this point. They knew something was wrong anyway..kinda hard to hide it anymore. So, now they are freaking out and think Im going to die. My brain is not working very well, as far as words coming out right, among other things, as you all are familiar with. Any suggestions on how to handle this situation??? They are having trouble in school becuz of all of this. I can't even help my young ones with their hw...sad but true and they are falling behind. I don't want them to worry about me and don't know what to say to them anymore. It's so hard to concentrate when your head feels like someone has a jack hammer on it..guess the hubby is going to have to handle it but no offense to men, but they are not the most sensitive ppl when it comes to comforting their children. Any suggestions???

[linnielou232]

For me my children were older and a blessing in my recovery.  It was my grand kid's that had a difficult time understand all of this 11 and 7.  They were scared and was trying to understand what Grandma Linnie was going through.  I explained it to them this way.  "Grandma Linnie need's to have surgery because I am so smart my brain is too big for my head".  They sat in silence for a moment soaking all this in and replied.  "You are smart grandma Linnie"   :)    It is hard to have people understand what is going on but for them they understood it better being explained this way.  Before my surgery we had a hair cut day and I let them shave my head.  When I came home from hospital they seen the stitches.  After healing I let them feel my head and explained to them what the dr did and why it is important that I don't do certain thing's.  Now they are my protector's and they understand what I can do and can't do.  They understand much better, just having some information that they can handle.  All of us handle issues differently, but for me I wanted them and my family to know what was going on because they have to live this journey with us.  I didn't understand Chairi and when I read about it before surgery I was scared to death, so we do what is best for us and for the one's around us.  Wish you the best.

[zygy2]

I think older kids can get more information but I also think that they don't need to worry as much as us!  Even when i had emergency surgery and things were really serious I still just wanted them to know that they were fixing mom :) They did not need all the spooky details and spend all their time being afraid for me.  I wanted them happy and relaxed.  I did my best to keep their life stable and fun and not filling it with medical details they did not need.  Honest answers are good but what they don't know won't hurt them!!  

[itsy1]

I'm sorry about your mom too.  I can understand how everyone is extra sensitive about medical care now.

You've had some great advice.  My kids are now 11 & 8; they were 7 & 5 when I had my CM surgery and surgery for a tethered spinal cord.  They too saw things as little ones. My 5 yr old wanted to be assured "mommy's bo bo was fixed" and my 7 year old wanted lots of questions asked and to go with me for my surgery to be sure I was okay.  After surgery my 7 year old tried to help our at home caregiver with me and her brother.  I think she went into Jr Caregiver mode.

I agree that explaining what's happening and keeping the lines of communication open are the best thing.  I think giving them a safe place to release their fears about this situation is also good.

I was 18 when I was diagnosed with CMI; I thought of that when you told me your oldests age.  (I'll share my "good" CM story if you want.)  If it had been my mother I'd have wanted to feel like I was involved in her treatment and care.  Of course different people have different reactions.

I guess what I mean is that since they are older, they might find it comforting to be more in the loop with your illness and more involved.  I think the idea of providing them with a place to access Chiari sucess stories sounds great too.  There's also several resources that explain CM in very simple terms.  Mabe they'd even like to go to the ns with you?  Do you think your doc would talk to them?

[Rylanesmom]

Good luck!  Did you find a good chiari specialist?  Mine is very thorough so my list keeps growing lol chiari does a number on us! I am sorry about your Mom:(

[Sheri817]

Thanks for the inspiration! I have tried to be totally honest with them but we lost my mom 2 years ago due to negligence at the hospital after a surgery so I think that has a lot to do with their lack of confidence. I just don't know how to reassure them after losing someone they loved already because of a complication. I feel like Im the one trying to carry everyone else and my shoulders are full enuf...no pun intended of course..lol  Anyway, I will continue to tell them all that I know and hope and pray that they will be ok. Of course, I just found out that I have multiple thyroid goiters on top of everything else...haven't told them that yet because im waiting to find out if I will have to have surgery for that or if it can be treated with meds and don't know if that will delay my decompression surgery. I guess I was just venting because just like everyone else with chiari.....the waiting is the hardest part when your in constant pain...I know that length of the tonsil is not suppose to matter but mine measured at 20mm 2months ago and they never did a cine mri to find out if it is affecting my spinal flow and my symptoms seem to have worsened in the past month or so and it concerns me that if they drop even more that it could get more serious...thanks for listening, and I will post when I find out more..hope you have a wonderful day!

[Rylanesmom]

I have 2 kids 13 and 7.  My 7 year old sees it all through the eyes of a little one and just does not get it .... Which is good.  My 13 year old straight a is a reader and had researched without my knowing.  She wants to hang out by me and help me.  Maybe if you found some factual sites with some success stories to show hope you could have them read about it.  Also there are times kids need someone to talk too you could have the school counselor pull them in.  Good luck ... Breaks your heart to see your kids struggle...we have been there.

[Sexybare]

Hi there. I also have 2 boys ages 12 and 14. I had surgery in aug 2011 and my boys and fiance are my rocks. They know everything i know, i tell them everything from the day i found out i had chiari. I was the one who thought i was gonna die, they were the ones to tell me "mom you need to do this so you dont get worse" , god bless them. Sit down with your children and explain to them all that is going on. Let them know you will recover and be able to feel better and return to daily activities. You may end up adjusting to activities ddifferently, i have. But let them know its ok to be worried and scared. But be open  you will be fine and so will they.:) its hard, i know from experience. Good luck. Let us know how everything is goin