My Disease Is Confusing My Daughter And Now My Lies May Effect Her. Scared!

[bustersacc11]

The past four years I have been a stay at home dad, while my wife works full time. I mentioned this to another forum member in PM. We live in a very cynical world. I am always with my daughter so people ask me what do you do. How come your around more than her mom. I lie and tell them that I do consultant work. I have more flexibility. I don’t what else to say. If I go into dysautonomia and they look it up on wikipedia they would be scared off. This month my heart was ripped and it was like a knife in my heart. My daughter comes home from pre-school and tells me that daddies stay at home, nana’s go to the store, and only mommies work. Other than family, nobody knows I am sick. I am scared for my family. I am scared that people will isolate my daughter and poke fun at her. I don’t know what to do. Pre-school and they are going around the class and asking what does your mom and dad do for work. She doesn’t understand our different roles as parents and was saying no..mommies work, not daddies. She is so innocent and I don’t want her latter on having to live my lie by telling people my daddy does consultant work.

I am very scared for the wellfare of my family far more than my life may end up being dysautonomia and methyldopa. What I wouldn't give to have a successful treatment to get back to work. Not for the money but for other reasons beyond people’s comprehension. Tough time right now.

[MomtoGiuliana]

I am so sorry you are feeling so poorly due to dysautonomia. I hope you are able to find successful treatment soon.

I just want to say that there are many situations where dad is at home while mom works, first of all. It would not be surprising if your daughter is not the only one in her class with dad at home most of the time. My sister works full time and her husband is home with their two little ones. My best friend went back to work when her son was a year old and her husband stayed home with their son for years. I work full-time and my husband has a business but is much more flexible with hours so he does a lot of child-care during the work day when needed (mine is now 10). I understand you feel self-conscious, but you are most definitely not alone, and anyone who would judge your daughter or your family due to this has serious problems. In my experience young children are curious about differences but not judgmental, it is adults who tend to impose that. In my opinion it is important for children to learn about the diverse realities for families--we are not all the same, and there is no reason we should be. What is of importance is the love you share!

I do understand that men tend to feel that they must be the provider and protector and are responsible for family security, that is something our culture tends to teach. But I hope you will be gentle with yourself and realize the great value it is to your daughter to have you at home right now! As far as misrepresenting yourself, this is a tricky situation that only you can resolve. I do think that it is fine for people not to know the details of your situation--it is your private life. You should not feel obligated to tell people what your illness is, etc. You do not need to "justify" yourself, IMO. And your child is too young still to comprehend what is wrong and you don't want to frighten her. What you tell her and what you don't has to be considered carefully.

[corina]

I'm so sorry Bustersacc, this must be quite hard on you. But in all honesty, if it were me (or rather my husband as I'm female) I'd tell my kid(s) that their dad unfortunately is sick and can't work. Kids are really flexible and can handle that, in fact your little one doesn't know any better than that her dad is home with her and keeps her safe. Adding that you're physically not doing well enough to go out working might work very well for her. It would mean that other moms/dads/kids will ask (her or you) what is going on but if I were you I'd tell my daughter to answer that it is too difficult for her to explain and that they'd better ask you. We have a topic on right now that can give you lots of ideas on how to answer that one.

I'm really sorry you're struggling with this and hope that one day you will be able to go out and hold a job! Just to be able to feel human

[jpjd59]

Children are very adaptable. To your daughter, it is normal for mom to work and dad to stay home. Now days, it is not uncommon for there to be parents with different work schedules or different roles than the "norm".

[peregrine]

Growing up we had a family in town where the father was a stay-at-home dad and the mother worked a job with a pharmaceutical company. As a younger child it did seem a little odd to me, but kind of cool - someone doing it differently, how neat! I don't recall anyone ever making fun of the kids, and I babysat for them from time to time when the parents were out. In our own household my partner (male) stays home, sometimes doing consulting work but mostly just staying home; I work flexible hours at graduate school. In our case we don't have kids, so he is the stay at home type for no externally obvious reason (there's some depression in his case, but that's not everyone else's business). Being a stay-at-home dad for whatever reason is something to be proud of!

Having grown up with a parent who was chronically ill (in my case, cancer, mom, for 10 years from ages 5-15) - I never got teased for having a mom with cancer, and some of my peers were envious of having a parent at home who could keep you company and make food. In some ways, if you can be open with the school guidance counselor or similar, that can actually help - if your daughter is stressed or upset about you being sick (goodness, let's hope not, but just in case) then the school will be aware and can help support her by meeting with the counselor or helping her with classes if you are having a rough time. However - it's not anyone's business outside the family if you don't want to tell them! I certainly was pretty flexible - in fact, although I miss my mom every day, in some ways having a chronically ill mom made me independent and mature earlier than most kids. Kids are flexible and can adapt to different situations; it helped me a ton that my mom was very open with me about her prognosis, what treatment effects she was having, what I could and couldn't do to help, when she needed me to be quiet so she could rest, etc - because I knew she would tell me if things were becoming worse (and she did, both times), I wasn't scared every day about the future. Your decision, obviously.

In terms of dysautonomia/names, for people who are liable to treat dysautonomia as not serious and who don't need more info (e.g. for "this is why I can't stand up at this volunteer event" or "please, I need a seat on the bus"), I just say I have "a heart condition" and stop there. That gets the serious part across, while also getting across that you're not (1) having vapors (especially worrisome for a guy given social expectations) or (2) on death's door. Maybe you can share that with people if necessary so you can stop feeling awkward about being a stay at home dad? You shouldn't need to justify that decision, but if it helps to have a reason, maybe think about trying it.

[Kellysavedbygrace]

Buster,

Good for you for being more scared of the lie for your daughter's sake and less scared of the lie for your own sake.

I ditto all our friends above and actually have great respect for the stay at home dad I know. His wife works and he stays at home with the kids and is active in his church and community. But you have a condition that makes even working at home or volunteering extremely difficult- with the added bonus that you don't "look sick." And in this case it is hard to be honest.

The real issue boils down to being honest with yourself, your family, your friends and even strangers because a lie always leads to trouble. And trouble creates more trouble. And the longer we go telling the lie, the deeper in we get and the harder it is to break free. But in the truth we are free.

Here's the truth: you are sick with a disabling condition which affects blood flow to your brain, heart and lungs. You are working diligently to find a treatment that will help you resume work but until then, you are disabled. You hope that this will be a short season in your life and that with the help of medicine and non pharmaceutical treatments you will be able to function better soon- but in the meantime you need their help. You need your daughter's help in being patient w dad as he is learning- kind of like going back to school. And you need the help of family and friends- to drive when you can't, to helps w grocery and meals when you can't, etc. (those are some of my needs- and my situation- yours may be be slightly different but you get the gist.)

And another truth: your friends and family really care about you. They want to know the truth, even if it is ugly or hard -they want to help you in your time of need. In fact it is a blessing to others when they can help you. And hopefully this season will pass for you. Allow yourself to be human. And let others in on how you don't have it all figured out.

I often laugh and say to my friends, spend a little time w me and I'll make you feel really good about yourself- because when I forget words, or can't stand, or have a hard time doing anything- we are all reminded that we live in these human bodies that are imperfect. And my body doesn't do what it is supposed to- which makes the other person feel better about themselves.

Buster, I'll be praying for you. It is hard to share the truth. God bless.

[yogini]

Your daughter is still pretty young. I am not sure kids at that age understand what their parents do. I recently got forwarded an email from my niece's preschool class where the quotes from the kids about what their parents did were all like "My mom eats lunch at work". Hopefully you will be better by the time she gets a little older and starts to understand.

If not, there are lots of parents out of work these days due to the economy, or sick, not to mention kids with "different" parents or families for various reasons: adoption, divorce, etc. I have a friend whose husband didn't work for most of the daughter's childhood due to a psychiatric condition; the daughter has grown up normal and well adjusted. I think your daughter is lucky to be with you all the time - a lot of kids these days don't have that and that's what they need most.

[shan1212]

My daughter is preschool age as well. I think you need to remember that kids try to make sense of their worlds and that involves a lot of silly assumptions. Like my daughter sees me nursing her sister, so she says that when she grows up, she will nurse her sister too. Um, no!

I know it's hard to be a stay at home dad, or a grandparent or nanny who cares for a child, when it seems like it's a mom's world. Many children don't have a parent with them at home, and I hope you can see that as a blessing and not something that you need to lie about (though I don't think there's any harm in claiming you are a consultant if it makes certain conversations easier . . . strangers don't need to know all your business).

Have you looked into a SAHD's group in your area? Hanging out with other men who are at home with their children might help you feel not so isolated.

Remember that in this economy, a lot of dads are home with the kids because the mom is the one with employment. A lot of things go into the decision of who will care for the children, so I wouldn't assume that anybody is judging you. I see SAHDs all the time, as well as gay parents, etc. Maybe I just live in a more progressive area, but that is really no big whoop here. The person I hang out the most with on my street is a SAHD whose wife is a tenured professor, and he's in his mid 50s with teenaged daughters, so it's nothing new.

As for having POTS and small children, I get it. I'm not very good at suffering in silence, so I'm afraid I moan and complain a lot. Last month my preschooler said she was "too tired" to go to school. She wasn't sick, had slept her usual amount, etc. I called her bluff and said she couldn't go to a birthday party that night if she was too tired to go to school. She decided to go to school. She was fine the next day, but the day after that, when it was time for school again, she said she was too tired again. It hit me that she sees me say that I'm too tired to cook dinner or do things, and then I get to lie on the couch. So she sees it as an excuse to get out of things. Ouch. Sometimes she says she's dizzy, too. Our condition is real, and it does affect every aspect of our lives, but that's not the kiss of death. We manage, we cope, we persevere, and our children learn from that too.

I chose to be a SAHM, but it does frustrate me that now that I have POTS, I couldn't work if I wanted to. I don't like having the option taken away from me, just like I don't like knowing that I couldn't (or really shouldn't) have a third child. But this is my life, and I am blessed in many ways. Sometimes I do tell people about POTS when they ask if I plan to go back to work, partly because I want to make sure people don't think I'm lazy, I guess, but also because I don't want people to think I'm a woman of leisure. Ha. So I get worrying about what other people think, but ultimately, what's important is your family. Your daughter is blessed to have two parents who love her, and it's special that she gets to spend all day with you. That is such a gift, and that will be what she remembers 30 years from now. And remember, it's 2013, and a working mom and a SAHD are very common these days. Hold your head high -- your job is just as important as your wife's!

[spinner]

I know exactly where youre coming from.

Im not giving medical advice, but im lending experience.

You are on the EXACT right track by "consulting". The idea is that you ARE working at home. Set up an office and actually DO work

of some kind. Figure out your talents and some way of making money. Ive done it myself so it can be done. Then you HAVE a job.

Having an office that is isolated that is set up like an office will help. Get a business card printed up. You can make money in all kinds of ways.

1. Selling. You can become a manufacturers rep with a telephone and a business card. Look online for MANA. Anyone can work a phone. PM me if you want to know how to do this.

2. Invest. Call yourself a day trader. Do small investments.

3. SERVICE. There are tons of service jobs or repair jobs. For example, learn to work on computers. Take a class or read a book. Then buy broken ones and fix them and sell them on craigs. Or do it with bikes or anything you can set on a desk and fix.

4. Memoribilia. Open ebay accounts, and use craigs. Buy and sell. Restore things.

The possibilities are endless. All you need is a tiny office. Call yourself a WORK AT HOME DAD. People have respect for that.

Ive made money doing it for years. Craigs is FREE. You can sell almost anything on there.

[bustersacc11]

I genuinely appreciate everyone who replied. What makes it special for me to read these responses is it is coming from people that sympathize but in many ways empathize with what I am going through. I thank you for taking the time to respond.

My father was chronically ill from the time I was 16 to 25 yrs old. During those adolescent years my friends were aware that my dad was sick. They still were my friends but reflecting back we didn’t do as much over my house. Looking back, I don’t know if I was anxious about having them over so I always tried to avoid it or did they not want to come over because they were uncomfortable. I guess I will never really know. More importantly, I KNOW a lot of my insecurities today come from how my life growing up with a sick dad affected me, having to care for him, and our household for so long. I had to grow up fast and take on responsibilities that typically someone my age usually doesn’t have to taken on. I don’t want that for my daughter. For as long as I can, the details and limitations caused by my dysautonomia I just don’t want to bring her in this world. I hope that when she is much older she will understand that I did it for her best interest to live without any more needed stressors.

I know that I am living a terrible lie and it is stressing me out. I agree that living this lie will only dig me deeper into a hole. If I find friends or as my daughter makes friends eventually they are going to get curious as to what I am saying doesn’t add up. I kept putting it off and telling myself well she is an infant, or she is two, and I really won’t have to worry about it until she gets into kindergarten. Well time flies and here we are! I have to draw the line in the sand and either start telling people what is wrong to an extent and accept the fact if they don’t want to continue are friendship or keep telling people that I do consultant work with hopes that a prayer will be answered some day and I will be able to work in some capacity soon.