What To Tell Your Kids And When?

[Brye]

I need some help on when to tell my kids and what to tell them about being sick. For those of you who have had to take on this task I would love to hear your ideas on how you handled it. I try really hard to hide it from my kids. They think I'm a clutz and fall a lot but I don't know if I should tell them. Their ages are 7,5,2,1. Obviously 2 are to young but I have a hard time coming up with excuses for not making things. We don't go to the park because it's too hot. My 7 year old asks me what does it matter that it's hot. He keeps asking me when I'll be able to play basketball with him and why I can never take them to the pool. It's so heartbreaking!! I don't want them to remember me as a mom who is always too sick and tired to do anything. Anyone who can share what worked or didn't work for them would be greatly appreciated. I know there are a lot of people out there trying to deal with this illness and keep up with young children.

Thanks!

Brye

[firewatcher]

My boys (10 and 7) know that Mommy is sick and sees a lot of doctors trying to get well. The oldest one almost remembers before I "crashed" and we could do things. They both know how to call Daddy, Grandpa and 911. I am alone with them a lot since my husband travels, so we do quieter, inside games like checkers and I am the "book reader" for them. You can't hide it, they know anyway. It is amazing how perceptive the little ones can be. They need to know that your body won't do what their bodies will, you could explain nerves and the different nervous systems to the older ones. It's like the air conditioning in the house; when is supposed to come on when it gets to a certain temperature and cool the house down, but sometimes is just doesn't work or doesn't make the house cool enough. I know there is a better analogy, but its too early for me to think of it.

Honestly, they know already; they just don't understand. Eventually they will.

Once they know the term POTS or whatever you have, they will tell EVERYBODY they meet. When I was little, my Mom got her tubes tied. My Dad explained to me that it was like what we had done to the dog so that she could not have puppies. I told everyone (much to my Mom's mortification) that she had been spayed! (I was 5.)

[Rachel]

I have a 3 1/2 year old son, William. He has never known me to be healthy, so my limitations are "normal" to him. He does know that I am sick, and that his daddy is healthy. He is too young to grasp a lot of details and specifics, but he does know quite a lot about my health. It's impossible for me to hide how sick I am, so I rarely even try. The only time I do try to hide it from my son is when I get to the point of tears. but even the tears can't always be hidden. William has seen me cry two or three times. He was amazingly sweet and sympathetic, not scared at all. He just says, "It will be okay, Mommy," and he rubs my back and snuggles gently and quietly. He is definitely learning compassion because of my illness.

When he was two he definitely didn't understand at all why I couldn't do certain things. Once he hit 2 1/2 and then 3, he really started to grasp my limitations. It is surprising how much a little one can understand. I am very calm about it all, and it hasn't been scary for him. I think our attitude makes a big difference in how our children understand and relate to a parent with an illness. If we aren't scared, but are just kind and matter-of-fact about it, they will learn to respond the same way.

William knows that I am tired, that I'm not very strong, and that I need to sleep a lot. He knows that I can't stand very long, and that sometimes I can't sit up. He knows that I can't go outside when it is too hot. One day he asked me to take him outside, and I had to tell him that it was too hot for me. He said, "Only Daddy can take me outside when it is hot." He doesn't completely understand, but he has very quickly learned that this is the way it is, and that is okay. He has learned how to take care of me by watching what his daddy does, and by listening to what I need. William will bring me my walker, Gatorade, water, food, a stuffed animal, a blanket, or anything else he thinks I need. Then he feels like he is doing something to help, and that is important. William even likes to take my blood pressure when I'm not feeling well. It's a fun game for him, plus he thinks he's helping (even though he never gets an accurate reading )

When I'm having a "good" day, but am unable to get out of bed, William just brings toys and games into bed with me. We work around my limitations to have a good time and do something special. Sometimes we watch tv or a movie together. Sometimes we color. We might have a picnic on the floor for lunch so that I can lie down during meal time and not have to sit up at the table. It can take some creativity to come up with easy activities for those bad days.

Your children, especially your older ones, know that something is wrong and that their mom is sick. I think it is good to just be honest and give simple explanations. As long as you are calm about it, they won't get scared, but they will begin to understand and learn to live with your limitations. Shower love on them so that they know you still care about them. Let them know they are special to you, and look for special things to do together that are easy for you.

I know there are other moms on here. Hopefully you will get some more suggestions from others who are going through the same thign. Hang in there.

Rachel

[Brye]

Thanks for the responses. Some good tips!! It's hard to explain to adults what the problem is much less a child. It's been difficult to know how much to tell them because their little minds wander so much and the next thing you know we've been spayed. (That one made me laugh out loud ... thanks for sharing that!!) I'm a little afraid to tell them I have POTS ... who knows how that one will come out at school. I'm just getting very tired of making excuses but don't want them to think I'm horribly sick.

Thanks!!!

Brye

[firewatcher]

Thanks for the responses. Some good tips!! It's hard to explain to adults what the problem is much less a child. It's been difficult to know how much to tell them because their little minds wander so much and the next thing you know we've been spayed. (That one made me laugh out loud ... thanks for sharing that!!) I'm a little afraid to tell them I have POTS ... who knows how that one will come out at school. I'm just getting very tired of making excuses but don't want them to think I'm horribly sick.

Thanks!!!

Brye

You'll get a police raid of your houseplants!

[Brye]

I've been worried about the house plant accusation too!! HA!!

Brye

[hollie]

Tell them the truth... Mine are 6 and 4 and I was dx a yr and a half ago. I've been up front since day one with them. You'd be suprised how understanding they can be. (not always, but most of the time) They don't need to know everything... heck... we don't even know everything about this stupid disease. But let them know what's going on and how to help you. Let them know that you'll be ok, but it will always be a part of you.

hollie

[taylortotmom]

Hi, I wanted to chime in here. I have been sick for most of my kids' lives (they are now 10 and 9). It is very important to be honest with the kids but in a comforting way. Kids tend to think in extremes- if mommy is sick she must be dying. So with young children (such as your two older kids), keep it simple but emphasize that mommy isn't dying but needs to work really hard at being well. Tell them what is hard for you: standing, heat, lifting, etc. Let them know what you can do: read, color, puzzles, etc. It sounds like you have already done a lot of the right things. I use the computer analogy with my kids and they totally get it- mom's body has a crazy virus that can't be removed without rebooting mom- lol. And humor, too- make things as less threatening as possible. We sing "Sunglasses At Night" a lot because I do have to wear my sunglasses at night in certain situations- lol But kids are so strong- I tell you, my kids have grown into the most compassionate kids. So, having a "sick mama" can have benefits. It was so, so hard when my kids were younger but it does get better. Good luck to you-

Carmen

[Brye]

I used the tell the truth advice on this one!! I was getting my prescriptions filled at the pharmacy and my daughter (5)asked why I take all those medications. "Is it for your back" I was tempted to just say it all was but I told the truth. I told her my heart didn't beat like everyone elses. She asked why and I told her I didn't know. Some times it just beats too fast and the medicine I take makes it beat like everyone elses. "OH" she said and seemed happy with that answer.

Thanks to all!!

Brye

[DSM3KIDZ]

When I first got sick my daughter was 5. The others were 2 and 6mo. I was just honest. Now my oldest is 10 and it's normal that mommy can't do heat and takes naps. During the summer it's harder because they are not as occupied as when in school.

I'm a christian so they know nothing is impossible with God.