Telling the Kids

[JanW]

I'm wondering how those of you with tweens or teens told your kids that you had WG. As many of you know, I will be going in for my first SS surgery on Thursday. So far, my 12 and 8 year old don't know anything -- all of the doctors appointments are taken care of during their school hours, and the only outward manifestation they see are my foot problems, which were happening long before diagnosis and that they have gotten adjusted to (and are obviously not life-threatening in any way). They don't really notice, or comment on, my nose, and with the SS they are used to hearing me wheeze and think that I have asthma (which is what I was misdiagnosed with). I am particularly concerned for the 12 year old because she can look things up on the internet and I don't want her to get the wrong idea or think that I will always be sick or infirm (or that she will end up with it). For the 8 year old boy I can still probably get away with just saying I'm going in for a surgery and offering up very few details, but my 12 year old want to know WHY I'm having problems with my windpipe. She is a very smart and very compassionate girl, but also a worrier. Any advice appreciated.

[Sangye]

I don't have kids but have spent most of my adulthood teaching and treating them. I can tell you that kids always know when a parent isn't telling them something, like about an illness. It causes much more stress because they "fill in the blanks" with all kinds of concerns and become fearful about asking you what's going on.

When you tell them about Wegs, I suggest you ask each of them if they want to know any of the details (surgery, etc...). Some kids are relieved by hearing the entire story, others say they'll worry more if they know.

I'd sit down with the 12 yr old and research Wegs together online. When you find the scary stuff, talk about it. Tell her what's wrong/ skewed, etc.... She's going to do it anyway. When I was 12 I was diagnosed with scoliosis. My parents and chiropractor explained it to me very briefly, but I still went home and looked it up in the encyclopedia. I looked up multiple sclerosis by mistake and was in a pool of tears before anyone found out and corrected it.

I have found that parents inadvertently cause their children more suffering by trying to spare them the truth. Be gentle, be truthful, and they will absorb your confidence and know that they can ask you more about it when/if they want.

[JanW]

I really appreciate your insight, Sangye. I have to tell you that this is NOT the way that I was going to go with my kids, but I will definitely think more about it. Since being a parent I find that I (like most parents) lose that point of view, so thanks. As I am sure that you can appreciate, it's not easy. For what it's worth, I would never hold back on her if it were her own illness, but find it harder to share all with her when she is dealing with mine (strictly from the aspect that she will be afraid that I am going to go into the hospital and never come out).

[Sangye]

It must be really hard to know what to do.

It would be a good opportunity to discuss fear and uncertainty with your kids, and what we can do about it when it comes into our lives. They'll have tools and strengths they wouldn't have otherwise.

Have you ever read "The Gift of Fear?" Many of the ideas in the last chapter (same title as the book) are worth sharing with your kids.

[JanW]

The Gift of Fear and Protecting the Gift are really popular with parents, I know, but I've actually never read them.

I'll think more about what you said.

[Jack]

I tell my children everything I know, but try to moderate the extremes a bit. They are still scared that I'm going to die any minute because it is obvious to them that I am not as well as I once was, but that is something they have to live with. You can't protect them from all the bad things in life much as we would like to.
I'm probably in a slightly different position to many because my children have grown up with a father who is sometimes sick and sometimes has to go into hospital. They think it is normal, which in itself is a bit worrying.

[DEE]

I tell mine everthing to mainly because 22yr old did the internet thing and he worries about everything 30yr old daughter has her own problems as recently been dignoised with crhonns diease and so we were at one time both going through pred experiance at the same time which made an interesting time for both our husbands' Also because they are older they have been into wg consult appointments with as have my husband and son in law .so have heard me ask him questions and ask them themselves I am very lucky to have each of them . DEE .like jack my two think its normal to get a call to say i need a lift to hospital or that im in hospital they say they just go onto auto pilot !!!!! they acceppt that thats my life as it is ;)

[elephant]

My kids are young 4 and 8. My 8 year old asks me many questions, he is very intelligent...so I don't hide many things from him. My 4 year old is too young and doesn't really know what is going on. I tell my son the truth and but we keep every thing normal ( usual daily activities). That is life, and many of us did not grow up like the ,"Brady Bunch." We all try to keep plugging along and do the best we can with what we have.

[Lightwarrior]

I agree with the thought that you should tell your kids. The kids that live in my house range from 33 years old to 2 years old. (33 year old daughter grandkids, 17, 16, 13, 6 and 2) Because of my extreme acute joint involvment and "odd" things occuring over the course of the last year, detached retina, broken foot, 2 pneumonia diagnoses they knew something was wrong. I printed out some easy to read short explanations from the Cleveland Clinic web site. I went over it with them and then gave them a chance to ask questions. When i feel bad my 2 year old brings me a band-aid and wants to listen to my heart with her stethescope, the 6 year old makes sure she picks up her toys without my asking (she shares my room), my 13 year old wants to know how I am and does extra things when I'm feeling bad. My 16 year old listens. The most affected was my 17 year old who has been with me since he was born. At first he was scared, didn't really want to talk about it, then he was afraid that I was protecting him and i was really dying. He finally has found a place where he can see me not feeling good, like today and not freak out.

Kids have a way of knowing when something is wrong and when they aren't part of it they think the worst, and even worse may think it could be their fault. Good luck, think with your heart and you will find the right tone to use.

[Sangye]

Lightwarrior, that's wonderful. The kids have learned to be aware of others' needs and to react with compassion. You've given them a priceless gift. :)

[Lightwarrior]

Thanks Sangye,
They are amaizing kids. Dominic my 17 year old started noticing the homeless problem when he was about 4 years old. He pointed out a man walking down the street (we grew up in a barrio) and told me that he didn't have a house. I asked him how he knew and he told me that he noticed he slept behind some bushes and noticed that he kept everything in a shopping cart. I told him that if he noticed a problem that was easy, anyone could notice he had to become part of the solution. I asked him to come up with something, his first was to let the man live with us. We talked about how that might not be safe, anyway there was a soup kitchen three blocks from my house so on my day off we would get up early and walk to the soup kitchen and volunteer. He was the hardest working four year old you ever saw, he set tables, washed vegetables and helped to put things in bags (we tried to send everyone who came to eat away with a to go bag for later). His entire life he has been helpful, they all have giant hearts I am blessed. This is my favorite Dominic story. He turns 18 sson.

[Sangye]

I'm smiling one of those big ear-to-ear smiles as I read that. We need a world of Dominic's and a world of Lightwarriors. :)

[jola57]

I am glad that the big bad world did not diminish Dominic's big heart.

[elephant]

Lightwarrior, that is amazing. I too am smiling...your a great mom.

[JanW]

You raised a great kid there, Lightwarrior!

[onatreetop]

I couldnt decide in the begining but it didnt take long for my 14 year old son, 13 year old b/g twins or my 6year old , to figure out that there was something really wrong. i didnt want to scare them either but I did my research and waited til treatment started then told them . I started with mom is kinda sick and has to take medicine that might make me seem different sometimes and that it might be awhile before I can stop taking it. Also that I was going to have to go to the doctor a lot more so I might not be home after school somedays. This lead to more questions that I answered openly. My kids know more than my husband at this point. They also know where my list of meds is in case something were to happen and they needed to call for help etc.......I felt horrible telling them that part but they needed to know. They have been greatabout understanding that when I am tired I mean it. That and I fall asleep were ever I am at that point couch, chair, etc...

Hope the surg. goes and or went well. The kids will understand in there own way that you dont feel well or arent acting like yourself. My kids refer to the meds as CRAZY MEDS now!!!!