Living with Lupus as a Parent

[superbabysmomma]

Hi!
I'm 30 and have had SLE for 11 years. When I was dx at 19, one of my biggest concerns was if I'd be able to have kids. With lots of support and wonderful doctors, I had a baby boy last Oct. who is very happy and healthy.
Now that I'm a parent, I'm looking for support/advice/experience about how other parents explained their lupus to their kids, whether you were dx before they were born or when they were older.
My son is only 10 months old so I obviously realize that it will be a long time before he understands.
I realize that he will be used to all my doctor appointments, days I don't feel well, pain I have, etc., and not know any different.
I also have antiphospholipid antibody syndrome, hypthyroidism, I'm blind in my right eye, neurogenic bladder, bowel issues, fatigue.

TIA!

Superbabysmomma :nurse:

[peonyprincess]

:thumbs: Congrats on the bouncing baby! As your child grow, he will accept everything going on around him as the norm. He will not realize really that our lives with Lupus, etc has changed our lives. I envy you for that :) . My kids are 15, 10, 10, 8 and sometimes have a hard time grasping that I am sick and do not always realize the implications of this disease. We keep them posted and tell them most of everything so they are well informed, but since this is all new to them, they easily forget.

Enjoy your little one!

[raggedyann1]

Tia,

I was in remission when I married my step-sons dad. We have had full custody of him for over 6 years now. When I came out remission he was just 10. I learned that kids need to be told what is wrong with age appropriate words and explanations. If you decide to put anything off you will be in a worse place IMO. Kids hear things and if mommy and daddy are avoiding telling them anything then they begin to imagine the worst.

If you are having a bad day then simple when they are younger. For instance mommy has days where my arms and feet hurt. That is often all they need till at least 7 or 8. All kids are different but that gives you an idea. My son knows the name of my disease and how it has turned our lives upside down. On his good days he is very loving and helpful on his hormonish horrible days I am the meanest mom in the world. :lol: He has expressed at times his anger at my disease. Which is totally appropriate and opens doors to another talk about it.

One of the best things our kids get is they learn how to do most household chores by the time they are 11 or 12. These are good life skills for any child to learn.

My only other piece of advice besides pouring out your love to you little one is to make sure he has time to just be a boy. We made a decision when I got ill again to leave our son in daycare. There were no young children on our street at that time and he had a couple good friendships there. It was home based so it wasn't a zoo. This allowed him play time afterschool and then we picked him up earlier than when I worked so he could do his homework at home. We just stopped daycare about a month ago. He is in middle school now and there are some other children who have moved in near our house.

One more piece. :rolleyes: Our son knows that I make every attempt possible to attend all indoor activities that parents are invited to. He knows that the sun will make me very sick so he just expects dad to be there for those outside days. Because he knows that I make his activities very high priority when i have a very bad day and have to miss something he understands. I often go when I shouldn't but I think that is part of being a parent.

Take care,
Karen

[superbabysmomma]

Critikal Rn and Karen-thanks for your responses. I appreciate the input. It will be interesting to see how things go in the future.
My husband is very compassionate and caring and I so hope my son will be the same way.

[blestby3]

My kids are 20,14,7 and they are aware that I have lupus & fibro I try to keep their lives as consistent as possible. I try to make all my doctor appointments during school hours. My boys (the 20 & 14) really understand what my limitations are( the 14 yr old has helped me thru menigitis) and offer help when I need it.
My daughter who is 7, understands less but is aware that I have to rest at certain times (especially on Sunday afternoons ) in order to do what I do. She is encouraging when I do not feel well. I telll them as much as the can understand for the age that they are. Your beloved son will know only what is normal for your family. Don't worry about what you will tell him, you'll know what to say when the time is right. Until then just love him and enjoy this blessing! :)

[macfamily53]

Dear Tia

Welcome to the site and congradualtions on the baby. He is such a joy i am sure. You do have your hands full with having health issues but all will be worth it. They are what keeps us going is our children. Well for me at least it is. I have been diagnosed with Lupus about 2 1/2 years ago and my children were about 15 and 17 so they were not little but had lots of questions at first but now they try to be very helpful when they can. They are very busy with college and work and some fun once in a while.

Your little guy will not think much of it probably and I have feeling your husband sounds like such a caring and helpful person to you and your son will be the same. I guess they say do not worry about the future just think about today, and enjoy that little guy he will grow up so fast. If you have to rest do not feel bad because know that will keep you healthier if you take care of yourself also. He is little and needs your attention but when you get the chance to relax and let hubby take over make sure you do that. It will make you a happier person and healthier.Well good luck witht that bundle of joy. Take care

Tammy

[superbabysmomma]

Tonya and Tammy-it was nice to hear from you.

I agree with what you said, that my son will not really know the difference b/c he will grow up with me and my lifestyle.
I was with some friends today and they asked how I was feeling. It was hard to answer b/c I realized that I don't think about my health as much as I used to. I know it's b/c I have my son to think about all the time and he keeps me going. He's the reason I get up in the morning. On my bad days we wind up playing on the floor (which is hard to get down on or up sometimes :P ) and watch tv and just cuddle. I know that I do the best I can.

My hubby has always been great when I get sick or wind up in the hospital. I was very proud of him when I was very sick in Jan. and our son was 3 mo old. I was hospitalized for 10 days and he took great care of superbaby and himself. I give him so much credit b/c he was juggling our baby, work, me, and he's also in recovery for drug addiction, so he had meetings and stuff to go on.
We have great support from family and friends too. I know I am very lucky.

[Hatty]

Hello

Congratulations on superbaby (and on having such a nice husband)! I was really interested to read your question and all the lovely answers because I have wondered the same thing often. I have a 13 month old and it is starting to become relevant as he is starting to talk and understand. I do believe our babies will grow up accepting us for who we are, and if mummy sometimes can't do stuff or is tired or has to be in hospital, then that's the way she is. I think to be honest it is an advantage, as one person has said, for children not to be waited on hand and foot and to know how to make their own cheese sandwich or hang up the washing! Ok, my son isn't quite there yet....

Some things that I have found helpful on days when my hands don't work or I'm too tired to move much...

Have a safe room (for me it is our bedroom) where you can lie down and he can crawl around and play with things safely.
Strong dungarees on a crawling baby make them easier to manoevre away from danger if you have very arthritic hands in splints and they are protesting.
Use a playpen so that there is always somewhere safe to put him if you suddenly feel really awful and have to sit down.
Cuddle him lots! That's one thing you can always do, no matter how bad you feel, and is the most important thing you can possibly do as a mummy.
If you have bad hands, avoid buying any clothes with difficult clasps/buttons/laces/clips, or any harnesses/pushchairs/carseat clips that are difficult. If you can't do it up/undo it very easily, then you will end up frustrated!

Best of luck, anyway, I''m sure that we will be fine...

love Hatty