I need some advice from other lupus parents. I have an active 3 year old daughter. But I’ve been in a horrible lupus/degos flare for months. I’m practically bedridden. I need a walker to move. I have open wounds on the top of my hands and blisters. I have to do home infusions and im injections. As well as constantly checking my blood sugars. I’m struggling to spend time with her. I’m in tears in the morning until my pain meds kick in. I can’t move. I’m living with my mom and my ex husband has been taking her during the week because I can’t drive her to daycare at the moment.
How do I help her understand? She knows mommy is sick but doesn’t get why mommy isn’t better. She said, “when mommy face get small we play hide and seek??” I have bad moon face. I can’t watch movies with her all day in bed. I’m so used to being super-single-mommy
Any good ideas on what we can do together? I’m grateful I have my mom and her dad to help. But it’s pretty much been her and I for two of her three years of life. And there’s no substitute for mom.
I totally understand what you’re going through because I am in an active lupus flare with a 18 month old and a 6 year old. My best friend has moved in to help me juggle everything with the kids. I used to feel so guilty about asking for help but I do it because if I’m having a really bad day my kids know it. It’s hard being a mother with active lupus. If I were you I would work out a schedule with your parents and others and then go from there.
I have a great schedule and support system. For the time being, I can’t be left alone with her and I’m not. Thank god. But how do I bond with her. I feel like she feels that I abandoned her. Or I’m projecting. She is my world… I miss her so much. I think sometimes the emotional aspect of lupus and how it affects our loved ones is more painful than the disease itself… Thank you for letting me know I’m not a alone in this.
I too have been where you are many times. The worst for me was when they would want to snuggle and I had to force myself not to flinch from the pain. I have 3 very active boys and if it weren’t for my mom and friends I wouldn’t have made it through. First, you need to give up the idea of being super-mommy, easier said than done I know. Second, keep a box by your bed of little games, books, puzzles, yarn, etc… when I was in really bad shape after a car accident triggered the flare from hell I spent alot of time reading and playing simple games with my boys. I even kept a very soft squishy ball in the box to play catch with. It was one of those balls with “hair”. I taught my youngest son to crochet, we would drive little cars around on the bed, play elevator (hide under the covers, have her pick a floor number, push the button, then rrrrrrrr ding, and then the floor could be anything from dino world to candy cane forest to undersea kelp forest. I know it’s hard to be creative when you are in pain so if you get stuck just ask me. I spent months in bed when my kids were young. The main thing to remember is that your daughter doesn’t really know better. You know the things you want to do but she is still young enough for your illness to be “normal” for her. My older boys (18 & 16) had a much more active mom but even with them there would be weeks where they got to watch more tv than others. Plus I was on bedrest with all of my pregnancies so they all know what it’s like. When your daughter asks to play hide n seek, she’s really just wanting your attention. She’ll be just as happy playing polly pocket or paper dolls or listening to a story as long as she has your attention. Don’t fall into the trap of lamenting the things you can’t do and figure out what you can. I know it’s easier said than done. One of the worst days of my life was when I finally felt well enough to take my youngest (he’s 7) to the park after my car accident only to get there and have him beg me to swing. I couldn’t pick him up to get him in them. So he’s crying because he wants to swing and I’m in tears because I can’t give him what he wants when the dad of another boy asked if he could help and he put him in the swing for me. I learned a tough lesson that day. I hated asking for help but that day taught me that it’s ok to ask for help. I still struggle with asking for myself but I will for my kids. Anyway, I’m sorry for making this so long but you hit a tender spot in my armor…lol Please don’t hesitate to ask if you run out of creative ideas for stuff to do in bed. I hope your flare eases soon. Gentle hugs, Annemarie
Such wonderful ideas. And you really reassured me. I have been doing most those things. She’s such a good girl too. I’m so blessed. Motherhood is hard enough. Thank you Annemarie. Just thank you.
There are some excellent..really excellent books on this very topic. You can read both books by authors who had lupus or by children who were raised by parents with lupus.
At 3, they just get that you are sick so just answer briefly but honestly. Never think that they do not get how sick you are, they do!
You are very lucky to have a nice ex who must love his child very much...and sure he is enjoying watching her more too.
There are also child psychologist who can help you with this...no matter how hard you try...it is going to have impact on her life...more you get educated about how to help her, least it will impact her hopefully in not a negative memories.
So gets some books....and i also go see child psychologist if you can afford it....and speak to them, let them evaluate her and see if she has fears already or stresses.
Aww Jen -sorry you have been having such a vicious flare......damn lupus. It is hard to get little ones to understand why mommy just can't get up & do the things you would normally do. Been there done that with our daughter that is now 12 & still doing it with our granddaughter that is 3. I am glad you have your parents & your ex is helping. I know it is hard to reach out & ask for help so kudos to you.
Does she like to color or do puzzles? or Does she like to play memory or simple card games? I know even little things like that sound miserable when ya feel so rough. Best advice I can offer is to just keep explaining to her as much as you can about how mommy really wants to get better soon but that requires a lot of rest so mommy can get to feeling better soon. Or I would also explain that as much as I want to play I would rather just be here at home, near you - if I can't rest & try and do too much too soon I will end up in the hospital. Those were explanations that I would use on our daughter & have to use on our granddaughter when sick with lupus or a migraine. I have a box (you could use a bin or basket or whatever) that - when I am well & out & about- I get age appropriate card games, coloring books, washable markers, stickers, books, movies, games, etc that I sneak into the house & put them in the box . I would also hide a few treats. When I am sick I put the box under my bed & when they want to play its a whole treasure chest of new (yet inexpensive stuff) that she can sit in bet & do. I played some or helped color (great stress reliever if ya can hold crayon without pain or dropping it). My daughter who is now 12 who had to deal with a sick mommy was pretty good about playing on her own. She has Juvenile Rheumatoid Arthritis & when she had sick days she just vegged & watched movies or read. The 3yr old granddaughter - she is a different story - the box O goodies don't work real well just because she is just a busy girl. Thankfully she has a kid tablet (v-tech) that plays educational games or downloaded Disney movies or she plays on her moms tablet. On days I am sick we let her play on them most all day - goes in spurts - but as soon as I'm functioning a little better she would rather be outside or playing dolls etc.. & doesn't even play the video games.
I guess it just depends on if she likes to play by herself or if she has to have someone to play with. I know money is tight but if you haven't already you might look into to a myobi? its a kid tablet with parental controls that can be modified as she gets older to more age appropriate activities. Gr daughters V-Tech tablet can take pictures & they have games like Jake & Never Ending Pirates, Sofia the 1st, Cars, Dora, or a variety of Disney or Nick favorites that have games & drawing games that you can save & you can download movies to it as well. A lot of parents don't want to turn their kids into gamers or want to get them hooked on video games but.......they are educational & teach a lot of neat lessons . I am for them because she could snuggle up to you, lie on bed, or hang out in same room as ya without a lot of disturbance. Or I have fun helping gdaughter play some of the games & amazed at how much her counting & spelling skills.
If she is in to dolls or barbies she could just bring her stuff & play on the floor in the same room. If she likes to set up houses (we used catalogs with washcloths as bedding or (with permission) we make Barbie or baby water beds using 2 ziplocks Fill one ziplock as full as can get with least amount of air bubbles. Seal it & place inside another ziplock with zipper at bottom of bag. Push out as much air from 2nd bag & zip shut. (don't want both zipper seals at top of both bags or they will unzip rubbing against each other). Cover with a tea or hand towel & Barbie has a water bed.....Just her being in same room near you playing what she likes with you to encourage her "parenting" skills with babies or if she needs help picking Barbie or dollies clothes. Her just being near you - even if you are resting-may help ease her mommy withdrawals. I will ask my 12yr old what she liked to do while I was sick. I hope I was able to provide a few suggestions that could be of some assistance.
Just know that you asking for ideas means you are an excellent mom & that no matter how bad you are feeling you are looking out for your daughters best interests. That is a Great Mom move! Hang in there you are doing the best you can given the sets of limitations you have to deal with.
Hey! Stop beating yourself up ?? Believe me /trust me , kids are more understanding than we give them credit for!! Bless their little big hearts !! Smile enjoying time with you in her sight is very good ! My granddaughter taught me that , when the grown ups could not understand what was going on with me from the very start of this Living with Lupus stuff! She is now 8and I was diagniosed when she was 5-6 , man she made me want to live again! Really it is okay ,think of it like this , they(kids), are there as little angels sent by the higher power -GOD!! Yes! it is hard for us to let the little ones know that we are limited but somehow they don’t mind!! It is the moment that they can have us all to theirselves with out someone telling them no not now!! It feels good when my grand say to me grandma are you okay, do you want me to lay down with you? My eyes fill with tears , cause when she is at school , no one ask anymore are you okay! Oh yeah she has a 2year old brother and he tries to do things for me , while she is at school, like get the apples and organes for us to eat as a snack around 12noon, she taught him that and helps me smile at them both!! It feels good . So stop beating yourself up and go with the flow of things? Trust me she will be right there for you and understand more than you give her credit for-it will be alright…Beverly L
I can’t watch movies with her all day in bed. I’m so used to being super-single-mommy