Parenting with chronic illness
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Anonymous
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I am a SAHM mom to a one and two year old. My husband works very long hours. We recently moved and our new house needs some work, which we are trying to manage with covid and the supply chain issues. This week I was diagnosed with Lupus.
I am just so so tired and sad. I feel like I am failing my kids. I have no energy to do fun or educational activities or even get them out of the house. Our house is still a mess of boxes, workers are here all the time. I want to be able to do Christmas stuff but everything is just so hard. I'm just so discouraged. Those of you who struggle with chronic illnesses, how do you do this? It's so hard to accept that I can't go at my previous pace. |
Anonymous
| You do the best you can on days you feel good and on other days you relax and its ok to just snuggle with the kids and watch tv/videos or tablets. As kids get older, they get more understanding but for now, you just do the best you can and if it doesn't get done today or tomorrow and its not important, it will get done next week or even next year. You aren't failing your kids. You are doing the best you can. |
Anonymous
| OP you are doing your best! This is character building for kids! You don’t need a picture perfect upbringing to raise great humans. What I did when I couldn’t get out of bed is have them do activities on the bedroom floor. Comfy pajamas, give yourself grace, and if you can afford it every month get some maids. |
Anonymous
| Sorry to hear that OP. Things will get better with time and as you learn to manage the illness and its side effects. You have just been diagnosed so still need to get through the shock and realization of living with an illness like lupus. Start by focusing on getting help - even if a few hours a day for couple days a week. That person can get them outdoors. take them for a walk. Maybe also help with some household tasks. Also take things day by day - on days when you have energy - do some fun things with the kids and on days when you don't use the TV and educational games so you can get a break. |
Anonymous
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I am so sorry, OP. That must be really tough, and kids that age can really wear a parent out. I hope that having a specific diagnosis is helpful to you.
I have had to tell my kids I can't do this or that, and they have always understood. Sometimes it is disappointing but it's best to focus on the things that we are able to do. I have thought of special routines and activities with them that I'm almost always capable of doing, and I try to take care of things when I'm feeling good so that I can rest when I'm not. |
Anonymous
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I have Grave's disease. It is supposed to be very manageable, practically invisible, and it is, except during the initial discovery period, when it was one hellish year and a half of desperately trying to stabilize my symptoms (in and out of hospital, surgery, long recovery at home, relapses, changes in endocrinologists), and apart a few flare-ups that take two-three weeks out of my life each time. Apparently I'm a difficult case. Others I know with Grave's haven't had remotely as challenging an experience. I don't feel guilty at all about my kids. My mother has Multiple Sclerosis, which is much more burdensome, and I survived. My kids have fun, go out, etc, and during flare-ups, well, they don't as much, since I'm the primary caretaker, but these times are few and far between. It is part of their education to understand that it's not all about them, and that all our efforts count, even though sometimes achievement falls short. You also need to consider yourself, OP, and put all the different family members' needs in perspective. It's going to be okay. |
Anonymous
| Your kids are so young they will never remember this. Let them play with empty boxes and bubble wrap - that will be a ton of fun. Get the older one a kid's toolset so they can feel like a construction worker with the workers you have. Read up on coping with Lupus. You can do this. |
Anonymous
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This is manageable!!!
My dear friend and I are both SAHMs with chronic illnesses. She has big kids and I have little ones. Lots of tips: your first priority in your new home is to create a “room of yes.” Gated/lockable door, no furniture other than their beds (if it’s a bedroom) or a beanbag or similar soft chair (if a playroom). Keep all the toys in the closet or on a wall-mounted shelf at your eye level. Cover all outlets and pad all the corners. This will create a place where everything is safe for them and you can relax and not be on top of them every second. You can catch your breath and even pee alone! Keep toys in manageable sized bins and get one bin down at a time so the mess is never bigger than one bin worth. Build your routine so it is Rally-Crash-Repeat. When I had two toddlers, on a tough day, our routine was: Wake up and get diapers changed and get dressed in our room of yes Go straight into high chairs and play with small toys/maybe even watch a short tv show while I make breakfast, snack, lunch and dinner. I would get it all 100% out of the way at the beginning of the day, e.g., scramble some eggs and make pbj sandwiches, then parcel out some fresh fruits and veg into containers/plates for breakfast/lunch/snack, then put chicken and frozen veggies on a sheet pan with sauce and cover with foil in the fridge. Could do it all in 30 minute burst of productivity, then sit down and eat breakfast with the kids. After breakfast, wipe their hands and go straight from high chairs to car/stroller and go outside for a bit. At that age I would find a small tot lot with a fence or a sandbox or a courtyard where you can bring some sidewalk chalk and a ball. Low-expectation. 45 minutes outside. Eat snack outside so less to clean at home. Go straight from outside to the room of yes, give them a bin of toys and collapse on the floor nearby. They got some energy out and will be ready to relax with toys until lunch. Your next burst of energy is feed everybody lunch and get them settled for nap-time (or quiet time). Then you get to collapse again for a bit. After nap I try to do some kind of activity with them that requires a bit more supervision from me like playdough or fingerpaints or stickers but do it at the high chairs, then into the bath. After bath they go back in the room of yes and I collapse until dinner. Another big push to feed everybody dinner and get pjs/teeth brushed/stories read/into bed, then I go to bed myself. Leave the dishes in the sink for my husband. That is my “I can just do the bare minimum” day. They get their needs met but I am never “on” for longer than an hour in a row and I get long stretches to literally lay on the floor if I need to. If I am having a better day, I take advantage by adding folding laundry or mopping the kitchen or wiping down the bathroom. As for holidays, just do the basics. Get a cheap artificial tabletop tree that is 2 feet high and let the kids color some paper ornaments. Buy them each 2 presents and a favorite snack for their stockings and call it a day. Tell DH your gift to one another is hiring a local teenager to help unpack and break down boxes for a few Saturdays in a row. |
Anonymous
| Are you local, OP? I would totally come help you out for a day. |
Anonymous
I’m so sorry, OP that is really hard. My situation is more episodic (chronic migraines that cluster) and I work a desk job so I always had some childcare. For me I really focused on trying to end every day with as much warmth and love as I could pack in, hoping that the kids knew I loved them and was trying. My kids were very freaked out by severe migraines (vomiting and literally not being able to open one eye sometimes) until about age 5. My younger one is still stressed but takes his cues from the older one who knows this will pass. We talk a lot about how everyone struggles with different things and this is Mommy thing that is hard for her but that there are always people who love us who can help if we really need it. My husband traveled some before the pandemic and that was scary but I have some local family and tried to have as many back up plans as possible. I think it’s good for kids to feel they have a lot of adults who love them who can help. I definitely agree with trying to get some help if you can in the form of paid child care. You really need to take care of yourself even though it’s hard. I do believe my kids get what they need in terms of unconditional love from me, even on the bad days and I bet your kids do too. |
Anonymous
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OP here, thank you all so so much. It just so hard to accept that this is going to be my life from now on. I want to be the energetic person I used to be.
Thank you for all the tips as well as the kind words. Tomorrow is a new day! |
Anonymous
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Oh my gosh your kids are one and twoM please just skip Christmas. Seriously. Give them like one gift, snap a photo on your phone, and be done with it. Tell dh either he ships for the presents for his family or they aren’t getting any. Tell your family they aren’t getting any because you are overwhelmed.
I’m sorry about the diagnosis. I was diagnosed with a chronic illness before I had kids. I decided not to have them because I didn’t think I could handle it. But I’m not sure that’s the best answer. So maybe it’s better you had them not knowing. Please don’t have any more though. You don’t need anything else on your plate. Please just focus on your health, keeping the kids alive, and deal with the boxes slowly. |
Anonymous
Seriously, are you in DC area? Maybe we can suggest places to take the kids that are easy/services to outsource stuff/etc. |
Anonymous
OP- no I'm not unfortunately  I am an Alexandria native but we moved to the West Coast a few years ago. I am fortunate to have a community here though and I need to get over my discomfort with asking my friends for help.
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jsmith123
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I'm so sorry OP. You have a lot going on in your life besides your diagnosis. Moving + home construction + 2 toddlers is a lot on its own.
Is the construction throughout your entire house? If not, I would hire some organizers to come in and get a few rooms of the house completely "ready" so you have a place to go where you don't have to see boxes lying around making you feel like you need to *do* something with them. Also, be kind to yourself. And yes, ask for help from those around you. Sending hugs OP. |