explaining to our children

[cewilcox]

My stepson is 8 yrs old. I have been in his life since he was 4. His mother only sees him once every 3 months and I am his mom. He calls me mom and tells eveeyone I am his mom and that's it. He always known I've had health issue going to chiroprictor(b4 foud out chiari)/massage therapy other appointments. He has scene me in my bad times. But lately it has gotten worse. Way worse. I use to be able to hide a lot of the sleep apnea and bad pains because we didn't live together in the bad years well past two weeks it has come back. I am not sure how to explain to him what's going on. How do we explain this to our children? My son has anxiety too. I know we need to talk to him before it gets worse. I can't believe I am saying it can get worse. Wow  

[itsy1]

I wish I had had a thread like this to read before my 2nd surgery in 2008.  I had a 5 year old son and a 7 year old daughter then.  Cewilcox, I can empathise with what you're going through and I'm glad your son is doing as best he can with your condition.

I have been as honest as I can with my kids based on their age and developmental level, just like I would with any of the other big things in life.  I didn't get into too many details when they were younger, we just dealt with my syptoms and limitaions from "mommy's wonky head".  I did try to let the help as much as they could, and they are still very proud to help.  For instance, my daughter at 8 would help her little brother put on his shoes so I wouldn't need to bend down.  Now that they've gotten older I've been able to explain a little more, and let them help a little more.  It seems the more they can feel included in this journey with Chiari the more they can express their feelings and feel like they are helping their mom.

Beckyrudy, I've used the big brain comment too! ~laugh~

Sabbynal, that's great about the date.  I might try that with my son; he's going to turn 8 on the 27th.

[beckyrudy]

i dont have any kids but i lived with my sister and nephew for and while and my nephew started asking me why i couldnt play with him sometimes. i just told him that "my head hurts because im so smart my brain doesnt fit in my head."  he laughes and still gets that im in pain alot but i try to make it sound a bit silly so that he wont worry. when he gets older ill tell him whats really going on but for now i just want him to be a kid.

[zygy2]

My kids laugh when we say "small head, big brain"  I try to keep it simple for them and not really drag them into all the mess.  They do know that there are times I need extra help but my priority is to let kids be kids and keep them as stress free as possible.  I don't think there is much to prepare them for surgery days, that is just stressful for everyone no matter what.  My kids did visit me after Surgery number one and although I do think it was good for them to see that mom was doing okay, it was very hard for my daughter and she cried a whole lot.  I just want to avoid worrying them as much as possible.

[cewilcox]

My son has scene a lot of it already. But I haven't been through surgery and its all getting worse. I know he will understand he knows its my brain and its called chiari and it causes all sorts of funny and bad symptoms. He understamds it better than my husband. I wanted to reassure myself he will be fine and he isn't being overwhelmed. Its comforting to know other parents have kids his age and they are okay and understand and can help.

[Stephiec79]

Simply be honest with him. He's old enough to understand and appreciate the truth. My kids are 14, 10 & 9. They have seen my fall, pass out, cry with the pain, sleep endlessly, complain, they have gone to doctors with me, they have even gotten to the point where they can recognize when I am feeling dizzy!! They just want mommy to feel better. They want to be involved. When they understand what it is, it makes it less scary than not knowing. My kids keep telling me that once I have surgery in a couple weeks, I will feel better. They are very involved, and it helps them get through this too!
Good luck to all of you!

[Sabbynal]

Hey there,
I too have an 8 year old boy, and I had my surgery May 9th this year, and doing great. For my little man I wrote a poem, and it kind of is a funny way for them to get Chiari without freaking out. I posted it to this forum once and I will try to bump it to the top of the list so you can use it if it helps.
You are so very lucky, because you are close to one of the world's finest Chiari specialists, Dr. Anthony Capocelli in Ft. Smith. I have to drive from Memphis, TN to see him, but wow, worth it.
I am four weeks post-op, and I am up and going. My son took me out on a date tonight, said he wanted it to be just us. Oh yeah, he felt my absence for the week I was in the hospital. But he sees me really living now, and we talk a lot and cuddle and I try to just hear what he needs me to hear.  I let my children talk to an psychologist who specializes in anxiety the week before my surgery. She will see them again to check in now that I am back. It's real, and they worry. But they find their way too, and it's all in good hands. For me I pray and ask God to help where I can't.

On another note, it can get worse if it's left untreated. Mine was taking me down faster than I had ever known it to before, and the doc said I had to have help quick. I was so lucky to get the help I did. I am really living now, and the great news is, just as it could get worse, it can also get better--much, much better. Good luck to you. I will re-post that poem if I can't find it.It says "To All of Us". Keep hoping, and be blessed.
Abby

[cewilcox]

Showing the picture I think will help him understand.

[joyus12b]

Hi, my son is 8 now and I got sick last summer.  Up until then, I was wonder woman. It was a hard transition for all of us, myself included.  Anyway, I would be as honest as you can about what your current limitations are.  I let my son know that there was something wrong with my brain. I even showed him my chiari on my mri and a normal mri on the internet.  I told him I was trying to find a dr who could help me. When the time came for me to have my operation, I reminded him of the previous conversation and told him I found a dr that could help me.  I hope this helps.  Good luck.