Being a Mama Doesn't Stop When Chronically Ill

I first wrote this post right after the holidays, but life happened and I thought I'd share on the next holiday known to usually be involved with lots of kid activities, Valentine's Day. I've had to adjust my expectations this week and will talk in detail next week when things are more set in stone, but had a blood clot scare Tuesday and ended up having fluid overload. Since I've had to be just waiting and observing while it improves, I've been pretty confined to the bed. Not knowing how I was going to feel for Valentine's Day, I had been brainstorming ideas to make today special because my mom always did, no matter how small it was, it was always meaningful and a day to show how much she cared about my sister & I.

Here's the post from Jan 3rd:


I am writing this post during the worst bout of sickness we've had since we had the girls (and there's been a lot) on top of a flare so it's been a rough time since last Friday when it started with my youngest. This is a great explanation of what it's like to get sickness on top of being chronically ill. We took our New Year's Eve pic with just me and the girls because my husband was in the bathroom throwing up at that time and it wasn't even difficult to stay up until midnight since we had been pulling all-nighters the previous nights. I know a lot of people are also experiencing sickness going around and it's so difficult when you have to take care of sick kiddos or if you're the sick one, but still needing to take care of the other energy filled, healthy kiddos. I feel like that's the best scenario to show you a glimpse of what it's like living constantly with one of my diagnoses - the crippling fatigue, the abdominal pain, the nausea, the headache, the aches. As hard as this week has been, when sickness like a stomach bug hits ours house, the girls usually behave surprisingly in ways that blow us away. Being more patient, more independent, and playing by themselves are just some of the things that I realized they do because they understand when someone doesn't feel well.



After we had our first daughter, we contemplated only having one child or toughing out another sick and miserable pregnancy to give her a sibling (this was before my EDS, POTS, & MCAS diagnoses). Even before she was a year, W had a very motherly and outgoing personality. We knew she would blossom with a forever playmate. I think about this a lot especially times like last Monday when I got disappointing news on the phone and burst into tears. W ran over and consoled me and said way too mature phrases for her age reassuring me she will take care of me and things will be ok.


Oh, the guilt of that. The guilt that it's not the 1st time she's seen me crying. Guilt that she knows so much about doctors and appointments, mommy's medicines, and mommy getting treatment that a 3 year old shouldn't know. Guilt that we thought pregnancy and a hysterectomy was supposed to make my health issues improve and not the opposite. But in moments like the one above, when both girls react in such loving and caring ways, I can't help but realize they are learning positive things from all of this, like empathy.


The holidays just passed and you can assume that guilt would be a forefront during this specific season. The season of events, parties, activities. Unfortunately I couldn't really do those things like years past. So taking our girls to see Santa, to the Christmas parade, or even just driving all over look to look at lights were some of the "can'ts." So yes, there was definitely guilt, but there was surprisingly also grace. Grace that such little things can bring so much joy to a 1 & 3 year old. You better believe we watched some great Christmas movies, read Christmas stories, sang Christmas songs, and did a little bit of crafting.


So we don't have the memories of reactions to Santa this year, but I can tell you the memories of sipping hot chocolate and doing "cheers" with our mugs, the girls being the ones to decorate the tree and absolutely loving it, C baking donuts with W because she's been obsessed and asking for them, W being so excited to write and spell her name in a Christmas card, the girls being so proud to pick out presents online and then help wrap presents, and picking out their fun Christmas jammies each night. We can still make plenty of memories, I need to just adjust my expectations on how much we can do and realize that the girls don't care what we do as long as we do it together. I thank my aunt for making sure I knew this and that her boys grew up not thinking or feeling any different about having a mother with health issues.


What makes me proud is how they will grow up being normalized that people have canes, they use heating pads, that people have fatigue and pain and have to spend time on the couch and it isn't because they are lazy. Disabilities and support devices won't make them stare, think twice, or not know how to act because they had plenty of practice with me. They will be grateful to do any new activity or tradition because they know how much it took their mama to participate in it. Yes, being a mama doesn't stop when you're chronically ill, but it can be an opportunity to be creative on how you will celebrate and enjoy special times or holidays.