Friday, January 6, 2017

Chronicles of the Chronically Ill Parent

I probably had two tear-filled breakdowns after getting a new heart diagnosis. I think at two, I was doing pretty well. 

What haunts you most is how it changes parenting, and being there for your family. My goals became just to get another fifteen years out of life-to make sure all of our children were grown. I hope I get to have that. I also hope being this sick doesn't hold them or my husband back, or hold me back from helping them...It bothered me so much after my severe tacchy episode that my baby would just tell me she loved me twenty times a day-she would suddenly drop what she was exploring and hold me like she was scared I was going away. And she can now work the buttons on the blood pressure cuff. I feel so sad this has to be a part of her life at all. 

I wasn't healthy before, but I was the kind of sick people could forget about. And I didn't talk about it because who the hell wants to reminisce about that time you were allergic to yourself? Or found out you had a scarred and messed up kidney while in surgery? What about that time you had a heart episode while pregnant and fainted? Or when you had to have operations for your miscarriages and kept setting off heart alarms and almost bleeding to death? Fun times. 

Now, I can't hide it. I have to work toward being more in shape, but it won't get rid of what is going on, which I realized mid-stride while swimming laps this late summer and having to cope with chest pain. 

I don't have support from an extended family, but I do have it in our close friends. And my husband helps out so much. Him just being around allows me to navigate life easier, but he actually helps, too. Chores I can't deal with, homework, DIY projects-he's wonderful at all of it and I am so lucky. We've had to instrument a system of cleaning for allowance for the older kids. It keeps everything mostly manageable and they are excited to earn dollars here and there. Since they attend a charter school, we have expensive uniforms to keep up with, and they've learned the schedules and procedures for wash days so I have everything in place. The homework here, thankfully, is reasonable. Something I know a lot of students and parents don't have. 

Truly, I'm lucky. I'm lucky to be alive, and lucky to have the family I do have. 

You still feel guilty, though. You feel bad for not being able to take them more places, to more lessons, you feel guilty for ordering take-out when you can't cook, hell sometimes I feel guilty for when the toddler is in disposables instead of cloth. I feel guilty for not homeschooling or having the energy to really consider it. You think life was supposed to be more than this. I was supposed to be more than this. 

And you feel guilty when you're not working, too. 

I understand where it comes from, but I also know it's useless. 

I'm not going to beat myself up about it this year. I refuse. I'm going to try to include down time activity lists (sensory bins, movie days with blankets and pillows, board games) and really easy meals for the days when I feel terribly or have an episode. My husband even said to find work for the joy of it this time around since it is something I can finally consider-and to realize my work was worth something. Also a thing I have trouble with...So, yeah, no real freebies this year. Except blog buttons. You will get some of those pretty soon. But other than that, anything I put out this year will be WORTH SOMETHING. And it will bring me some happiness. Or I'm not bothering. 

Low-key NYE at home with my favorite human beings.
Waiting on the homemade balloon drop, which my husband almost fell
off of the couch to do...I'll try and think this through better next year. 

Because, from what we can gather, I get a short time here. To live some kind of happy life. That doesn't include working for a jerk for free, and it doesn't include projects I don't want to deal with that take me away from moments that matter. I also need to budget the time to care for myself and my sickness which means exercise and eating better. I'm going to work on asking for help when I need it. Chronic illness impacts the hell out of life, but instead of hiding it and suffering I can reach out so that the hit is not so hard on all of us


2017 is the year I chase joy, and get the hell out of my own way. 







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