When in MS limbo?

[Greg]

I have read a few different articles in various ms sites that talk about when and how to tell people about having ms. One of the questions that keeps coming up for me is how do I tell my kids about whats going on with me. We have 3 boys 7, 10, and 12. All are still small even the 12 year old who is on growth hormones cause he is the size of a 3rd grader and still very naive.

They know nothing as of right now other then Daddy's legs are giving him problems and we joke about my short term memory problems. I have mixed emotions on how much and when we tell them what is going on. I don't want to tell them anything other then what I have already stated until we have at least gone through the first round of testing and hopefully have some answers and hopefully a dx of something. Yet I don't want to keep them completely in the dark either, (my psychology classes coming thru) I have learned that children are a lot more perceptive and understanding in things then we give them credit for they just don't have the resources to express their knowledge.

Should we start prepping them now for all the different possibilities MS or not, or do we what until we get some answers ourselves and then start educating them on the different things that could happen?

***Post broken into paragraphs for readability. Some of our members have vision problems with large blocks of type.***

[mjan]

Greg..excellent ques. And you are right, children are soo perceptive but just may lack the "terms" like MS, spasticity. So you are doing great: Daddy's legs have problems..etc. Tell them what you CAN do and what you cannot do and how you need THEIR help. Kids want to help. Often they think of ways to help on their own.

I think of Michael J Fox who's own children, when they were much younger, just started calling him "shakey" dad or something like that. They grew up knowing this is just who he is and think no different.

Some children worry if you are going to die..so its really important at the "right" moment you address that this is not terminal in words they would understand.

I would have a little family meeting and ask them if they have ANY concerns. You may be surprised at how YOU are not one of them. LOL. But it gives them opportunities to know this IS a family situation.

My grandkids play with my canes..yes 3 canes. We pretend they are dogs who have to listen...or..funny characters and we act out pretend play situations.

They know I cannot do most Wii games. But I try the sitting ones and they love that they can beat me..or I accidently beat them not even knowing HOW I did !!

For the rest of my family.. they are asking my sister who lives next door how I am doing. She doesnt even know as I dont focus on it. So.. what I do is write a mass email to all folks I care about and give them and UPDATE..whats good or how I may need their help. They LOVE to help as well. Now I dont do the updates unless there is a new DX or sig change. I have many comorbidities trust me.

You and they will get through this..they will be so well prepared for LIFE on Life's terms

Warmly, Jan

[stalo]

I am in MS limbo, too, Greg, and I have a 10 yr old boy and a 13 yr old boy. I told them I might have MS, but I won't die from it. Right then, they relaxed & seemed less worried. I said I might get more tired or forgetful, or I might need more help from them as I go along. I said they should be prepared to wait on me hand & foot, which brought a laugh and a groan from them! So...I tried to make it light and not get into the what ifs too much. We'll take it as we go...good luck to you!

[Lendi]

Just be as open and honest as the need seems to arrive.

My granddaughers (9 and 12) know that Grandma has a disease called MS and that it can make me a little slow to get around. Sometimes I don't feel well, but then sometimes they don't feel well either like if they get a cold or the flu.

They go on the MS walk along with DH and I, their parents, aunts and uncles. We have a great time walking and laughing and talking. Some people go faster than we do, some slower and some with canes or in a wheelchair which the girls think might be fun to ride on sometime.

At that point they usually have a question or two, even sometimes at other times of the year but I found that just being easy and open and answering their question as they arrive seems to have kept their fears down. It's when a child feels as though there are secrets or dishonesty that they get upset. But, if the question isn't there, if the fear isn't there then I don't see any reason to go into detail before or even if it might be needed.

[Redwings]

Should we start prepping them now for all the different possibilities MS or not, or do we what until we get some answers ourselves and then start educating them on the different things that could happen?

Hi Greg:
You don't have a diagnosis yet, and there's nothing to be gained by telling your children about all of the things that could happen. That sounds more like you being worried about the future, not them. If you want them to not worry, that would only give them a boatload of unknowns to start worrying about. Being a kid is scary enough without having to listen to a rundown of differential diagnoses and the possible consequences. All of the uncertainty can just turn into another form of the bogeyman.

Try to remember what it's like to be 7 years old and ask yourself what you'd want to know and what you wouldn't want to know. My father was sick the entire time I was growing up. I can say without reservation that I wish I hadn't known even half of what I did about it and, as an adult, I'm thankful that there were things I didn't know.

Sparing children from speculation and details they don't need isn't keeping them in the dark. It's keeping them on solid, dependable ground. And so far it looks like you're on the right path by telling them that you've had a couple of things going on and you're getting tested. That's all you know right now and all they need to know. There's nothing to be gained by pulling a child into the drama of your uncertainty. When you have answers, you can give them age-appropriate answers at the appropriate time.

[sdherring]

I am recently dxed with kids 10 & 3. During limbo I would just explain how I was feeling to them, during testing I would explain what test were being performed. After dx i explained the disease to them (more the 10 yr old). We sat down as a family and watched dvd about the med. They sit with me for each shot and mark the chart.

i ,personally, try not to hide things from my kids because i don't want them to hide things from my husband and me.

You know your kids best, tell them how and when ya'll are all ready!