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the_librarian
06-19-2007, 09:05 AM
I know there have been a number of pregnancy posts that I have followed/posted to, but my question is how does your lupus affect your children (if you know). I had a flare that put me in bed completely dependent on my husband and mother (who lives close by). The whole time I was down I kept thinking how unfair this would be to a child, but my husband thinks that they would be understanding. I had a horrific childhood, but I really really really really want children. (My husband does too) I have the fears I think all future parents have, but how do you talk to your kids about your illness? Do they understand? More importantly do you think they feel cheated?

Thanks!

Saysusie
06-19-2007, 10:19 AM
I, personally, believe that children are much more intelligent, intuitive, understanding and resilient than we think. I know, from personal experience, that one thing they will not appreciate is not being told the truth. My children were young when I was diagnosed with Lupus (ages 9 & 13) and I explained that I had an illness that would never go away, but sometimes I would feel ok and sometimes I would be very sick. Basically, both of my children stepped up and voluntarily helped out around the house, helped to make sure that I was taking care of myself, watched me to make sure that I was not getting fatigued and understood those days that I called "Mommy's rest days".

How you talk to your children about your illness will depend upon their ages and the seriousness of your disease. For younger children, it is possible that less of an explanation will be necessary (no grand details about clinical issues) and perhaps more assurances you'll be OK. With older children, explanations should be more detailed and honesty is the key.
Regardless of their ages, make sure that you encourage them to ask questions and then make sure that you take the time to answer them honestly. If children really don't want to ask questions, they won't. But it is important they know that they can if they want to. Also, make sure that you are careful that you don't frighten them, especially younger children, and always consider how, what you say, will it be interpreted in the child's head? Children just want to be reassure thatt you're not going to die. I often, took my children to my doctor's appointments with me and encouraged them to ask my doctor questions if they wanted to. I always left that up to them (sometimes they came with me and sometimes they didn't - sometimes they asked questions and sometimes they didn't).
I feel that, the only time that it would be unfair to your children is when they are kept in the dark, not told the truth and not allowed to be a part of what is going on. Do not let this fear hold you back from having a child and believe me, what matters to them is your love for them.
The love between mother and child can endure anything and I would not change the short time that I had with my daughter for anything in the world. My life is better because she was here, your life and the life of your future children will be better because of the love that you share amongst yourselves. That is a gift that cannot be measured. If you are healthy enough to have children, then do so!

Peace and Blessings
Saysusie

Chickadee722
06-19-2007, 10:13 PM
I am in the same boat as you, but more concerned about caring for my child in their infancy. Often times I wake up in the middle of the night not even able to roll over my body is aching so much. What if my baby is crying in the middle of the night? Yes, I have a husband to help...but what about middle of the night feedings etc? What if i'm in too much pain to even be able to lift my child?

Fears that haunt me every day......

the_librarian
06-20-2007, 11:35 AM
Me too. What if I can't stay awake while feeding? What if I don't wake up when the baby cries and they just cry and cry and cry? My mother, mother-in-law, father, step-mother-in-law, brother-in-law and all of my co-workers are prepping just in case. It sounds like a lot of help, but I'm afraid of exasperated post-pardom depression. What about bonding? What about the love of a mother for a child? My husband reassures me though. We will do this together. He will wake me up when the baby cries, he will check to make sure I'm not falling asleep during midnight feedings, etc.

This has been the hardest part of SLE to accept. I've had fibromyalgia for years and there is actual evidence that symptoms subside during pregnancy, so I've been looking forward to that only to find out that pregnancy might be harder with lupus. I know we will do whatever we have to, but the fear is what gets me down.

magistramarla
06-20-2007, 08:07 PM
As a former La Leche League leader, my usual response is this - make it easy on yourself and breastfeed that baby! You can avoid getting up to get supplies, making formula, the bonding comes very easily and the baby will be healthier. Of course, you may have the concern of taking meds that will keep you from doing this. Ask your doctors if you possibly can breastfeed, then get yourself a copy of The Womanly Art of Breastfeeding, find your local LLL and educate yourself and your spouse.
Marla

LupusLeaper
06-21-2007, 08:46 AM
I, personally, believe that children are much more intelligent, intuitive, understanding and resilient than we think. I know, from personal experience, that one thing they will not appreciate is not being told the truth. My children were young when I was diagnosed with Lupus (ages 9 & 13) and I explained that I had an illness that would never go away, but sometimes I would feel ok and sometimes I would be very sick. Basically, both of my children stepped up and voluntarily helped out around the house, helped to make sure that I was taking care of myself, watched me to make sure that I was not getting fatigued and understood those days that I called "Mommy's rest days".

How you talk to your children about your illness will depend upon their ages and the seriousness of your disease. For younger children, it is possible that less of an explanation will be necessary (no grand details about clinical issues) and perhaps more assurances you'll be OK. With older children, explanations should be more detailed and honesty is the key.
Regardless of their ages, make sure that you encourage them to ask questions and then make sure that you take the time to answer them honestly. If children really don't want to ask questions, they won't. But it is important they know that they can if they want to. Also, make sure that you are careful that you don't frighten them, especially younger children, and always consider how, what you say, will it be interpreted in the child's head? Children just want to be reassure thatt you're not going to die. I often, took my children to my doctor's appointments with me and encouraged them to ask my doctor questions if they wanted to. I always left that up to them (sometimes they came with me and sometimes they didn't - sometimes they asked questions and sometimes they didn't).
I feel that, the only time that it would be unfair to your children is when they are kept in the dark, not told the truth and not allowed to be a part of what is going on. Do not let this fear hold you back from having a child and believe me, what matters to them is your love for them.
The love between mother and child can endure anything and I would not change the short time that I had with my daughter for anything in the world. My life is better because she was here, your life and the life of your future children will be better because of the love that you share amongst yourselves. That is a gift that cannot be measured. If you are healthy enough to have children, then do so!
Saysusie

I agree with this. I was diagnosed right after my first baby was born. I went on to have 3 more. I never really talked about lupus too much when my kids were very small. They just didn't understand. I would just say "mommy isn't feeling good today". When they got a bit older I put a name to it but they didn't know what that was. They just grew up thinking a sick mommy was a normal part of life. It wasn't until they heard about lupus in the media. The BackStreet Boys were really popular and one of them had a sister who had died from lupus. After hearing you could die from it there were some big discussions with them. They wanted to know if I was going to die. At that time I didn't have organ problems and was considered to have "mild lupus" so I told them that I wasn't going to die. They were fine with that answer and the discussions stopped.

Then of course I got really sick, lung hemorrhaging kidney problems etc. The Dr. tells them to go in to see their Mom who is on life support and in a comma because it's probably the last time they will see her alive....

This is a tough one. How damaging was this to my kids? Pretty dang damaging. They were older at the time this happened. ( 15, 13, 12, 10) so it was a little easier for them to sort it all out but it's still very traumatic for anyone to go through that. We had school counselors talk with them daily as they were going through it. To this day if I even get a cold they become very upset.

I must also add that while my kids were growing up they became very independent, and responsible, I think mostly because they had to. I taught them to pack their own lunches when they started kindergarten and to make their own breakfasts, sort and put away their own laundry etc. I supervised all this to make sure it was getting done properly but there were days when I just couldn't do it so they had to do it themselves. So I taught them to do it everyday to take the burden off me a little bit. As they got older and my lupus progressed they learned how to clean the house and cook dinner. They shared the chores and did them when I couldn't. My son especially (I have three daughters and a son) is great at doing just about anything you ask of him. He can change the oil or tires on the car, cook dinner, sew, crochet, build a shelf, clean the house, fix the computer, pack my parachute, hunt, play the trumpet.... He just made a bike rack for all our bikes with his new welder we got him. That kid can do anything, he's amazing!

Is having a mother with lupus damaging to kids? Yes, but life is damaging to kids. As soon as we take that first breath we have a death sentence. No one makes it out alive or unscathed.

I think my kids deal with me having lupus pretty well. My husband's favorite line when someone complains about my lupus is "She didn't ask to have lupus!" That is kind of a "DUH" statement but it makes everyone, including myself, stop and think. --->There is no sense in complaining about what we can't change. We just need to deal with it and keep going. Easier said than done I know! But that is why he keeps saying "She didn't ask to have lupus!" My husband is a good guy. I'm very lucky to have him! When we missed going to Disney Land because Mom was in the hospital, we all just have to stop and realize that I didn't ask to have lupus. We'll have to go again another time. Disappointing, but we deal with it. ---We actually never made it back to Disney land, but we ended up taking them to China instead. That was much more fun and I think they got more out of it. :D

I don't know what I would do without my kids. They give me and extra reason to keep going. They make it all worth the effort.

Valinda Mitchell
www.leapforlupus.org

Saysusie
06-21-2007, 12:19 PM
Very well said LupusLeader! And a poignant reminder of how important it is to make sure that our children understand and how well our children can step up to the plate once they do understand!

Thank you for your response!

Peace and Blessings
Saysusie

the_librarian
06-22-2007, 07:08 AM
Thank you all. These are all the things I needed to hear. I will be breastfeeding if at all possible, because I know all about the bond that builds between child and mother.

I know you are all correct about children being resilient and understanding and strong and wonderful and I'm not sure the Lupus would ever overcome my desire to have a child/children. I think because I had my first really giant flare, I was scared, but it is good to hear you don't feel like your lupus damaged your kids long-term.

Thank you all for sharing such insight and personal experiences.

the_librarian
07-05-2007, 10:55 AM
I went to a high risk pregnancy specialist today and it seems that my husband and I will be able to begin trying to get pregnant in the next three to six months depending on if I have another flare. We both found this to be excellent and exciting news and I just couldn't wait to share with you all. I know your encouragement and honesty about being a mom with lupus went a long way to quelling some of my biggest fears!

Thanks for everything!

Pretti in Pink
07-05-2007, 06:41 PM
Congrats on your good news. I am happy for you and pray NO MORE FLARES!

cramer
07-06-2007, 07:30 AM
I have 3 beautiful kids. After my first child, my lupus got a lot worse so I had a surragate mother for the twins that followed. I had a live in nanny and a night nurse. This might sound expensive but we got the medical insurance to pay for the night nurse because my little boy had apnea.An au pair can also work. Before we qualified for the insurance, we got college students to work nights, 12 hr shifts. I slept every night. I wanted to take care of the twins, but I knew getting up at night would be out of the question. I kept my door open, so I could make sure the babies were'nt crying and were well cared for. As soon as they were big enough, I spent one week staying up at night (only) and got them to sleep through the night. I did it by letting them cry. It worked. I also started them in preschool at 2 1/2. My twins are now 7 and are great kids. I still have full time help. Its expensive but its my health that is at stake. Sometimes we wish we could use the money for something else, but we need this.

the_librarian
07-06-2007, 07:47 AM
We've thought about outside help as an option. Luckily most of my family works for the State so we can "share" time when my husband and I go on maternity/paternity leave. My mother will be able to take some time to help out, but my (rather large) family have also volunteered to make the two hour trek to my house to spend a weeks vacation. If everyone in my family did this, I would have help until the baby was almost a year. We'll see if that is necessary. I live in a town with several colleges so the college student thing might work. One of my husbands best friends has an au pair and that seems to be working great for them. By the time we have children, I believe their children will no longer need her so I'm hoping she will come stay with us. Our friend is a doctor, so our place is not quite as impressive, but we have a comfortable amount of space. I'm glad to hear this option has worked out for you. Thank you for sharing :)

LAURIW
09-20-2007, 06:49 AM
hi ladies,
Librarian, how are things going now? have u been given the green light to start trying?
I have SLE and RA and also would really really love to have kids, but am soooooooooo scared! i suffered a miscarraige last year and the thought of going through that again terrifies me.
O, a little baby would be so loved..............both my hubby and I are absolutely crazy bout kids, well i am seeing my doc in October again, so hopefully i will get some good news to.

Have a happy healthy day!
Luv
Lauri

the_librarian
09-20-2007, 11:01 AM
So things are actually going pretty well. I have had a lot of pain lately, but my blood tests remain in the normal range, so technically my husband and I can start trying to have a baby. We have been working on getting healthy in other ways as well. We both quit smoking (a long time awful habit that I had been trying to end for a number of years) and I've been taking the prenatal vitamins for almost three months (recommended by the specialist). I have not however been able to lose much weight. It seems that even on strict weight watchers (not that WW is strict, but I am following it strictly) and regular exercise, i have been unable to really lower my weight significantly. So we are not "actively" trying to get pregnant. Having said that, we have completely stopped trying not to. The rest is in God's hands.

(This is the first I've told anyone. I should not be putting this out there, because we agreed not to advertise that, but I'm so giddy about it :) So, shhhh...

Maggie17
09-21-2007, 09:49 AM
I have had SLE and FM for about 20 years. My hubby and I both wanted children though I worried constantly about my ability to care for her. I also thought a lot about the extra responsibilty it would put on her and possible resentment because mama is often ill and unable to attend outdoor events. My husband is one of God's blessings in my life and convinced me we'd figure it out. We took fertility meds and got pregnant twice. I miscarried early on in both. After which I developed a blood clot in my leg and my docs said no more. I was despondent as we were not good candidates for adoption (with the great shortage of newborns - who would choose someone like me???). God blessed us with a private adoption (a girl my extended family knew) and we have a beautiful 20 month old girl. Alexandra is our miracle baby and worth every sleepless minute. I have to say though it is not the infancy that was the challenge for me. Once she was ambulatory it became much much much more difficult energy wise. I don't have any family help because they live too far away, but I do have wonderful friends and neighbours who help out if I'm really sick. We found and excellent mom who looks after Alexandra 3 afternoons a week so I can catch up on my rest or get other chores done. My hubby travels for work so is gone for 7 days at time then home for 4 so this extra help is vital. It was very hard for me to make this decision. First, I think guilt is served with motherhood!! I wanted to take care of her 24/7, I felt guilty about being a stay at home mama who uses daycare, I'm always conscious about how my illness may affect her. My own childhood was plagued by unreasonable expectations and a mother who was always complaining. I try to make "sick days" the ones where daddy is home or daycare days. My daycare mom is really good about taking her last minute if I need her. My advice is if you want it, do it... but don't go off your meds in order to breast feed - you need to be as well as you can possibly be to make it work. When you bottle feed take your shirt off so you are skin to skin, hold your baby in the same position you would to breast feed i.e. tummy to tummy. Make it a quiet intimate time between mama and baby not just a necessary thing. I mourned the loss of this bonding time when my daughter started sleeping through the night. AND get help - don't wait. I would not have crashed as hard as I did if I had gotten help shortly after her birth instead of a year later. I hope I can instill compassion and independence in my daughter, but in the end we just simply do the best we can by our children and love them love them love them. Good luck and God bless.

Cheers:)

Maggie17