A friend shared this article on parenting with chronic illness with me and it really struck a chord. Made me want to weep with empathy for all going through this type of experience. Made me want to be gentler on myself. Be easier on my family.
I would imagine that the people most of us with chronic illness are surrounded by are those that are well. I have no illusions that this is life and everyone is going through something - of course we all are! But those of us ill and mostly housebound probably see a lot of others around us that can still actively parent their kids. I sure do. I don't have anyone in my neighbourhood or circle of friends that I see regularly that are dealing with what our family is. We see moms and dads that leave the house with their kids. A lot! That volunteer at school. That take their kids out to do sports and piano lessons. Parents who regularly socialize with other families and have all their kids hang out together. Parents who take family vacations and go to the mall with their kids. Parents who can afford to get a babysitter once in awhile so they can go out and enjoy themselves. And when they do go out, not feel so sick that they have to fight through it to enjoy themselves.
It's not that I am not crazy happy to be here. I'm so grateful to still be on this earth and to be able to be here for my kids in the capacity that I am. I see them every day. I hug them and kiss them. I talk to them. I've even been taking them to swimming lessons. This is huge, massive, fantastic. I am in love with it.
But sometimes, there is that natural overwhelm that slaps me in the face as I am constantly reminded what I can't do for them - that all their friends' parents seem to be doing. My kids weren't allowed to have playdates at our house for several years because I didn't have the energy to supervise and I couldn't handle the noise and chaos. They lost friendships because of it. Now they are allowed one once a month or so. This is hard on them for the lack and hard on me for the effort. And I'm too strict when they have playdates because I still can't handle noise and chaos! We don't do sleepovers for the same reasons. And I'm grumpy, a lot. I wish I wasn't, but I'm tired and in pain and have trouble standing up a fair bit of the time still (lightheadedness/dizzy). Then there are the meds that bring on anxiety and rage. (Fun!) I'm also not at work so we just don't have the cash to do the 'cool' birthday parties or buy them the latest clothes or toys. Not that I was ever a huge believer in that sort of stuff - but sometimes it would be nice for them. I never volunteer at school because I soooo can't.
My kids hear 'No' all the time. You thought a 2 year old's 'No's' were over the top? Try me! 'Mom, can you help me with my homework?" "Mom, can you do this craft with me?" "Mom, can you make me a snack?" "Mom, can you read this book with me?" "Mom, can you play this game with me?". It saddens and embarrasses me to an extent that most of the time they don't even ask me these questions anymore. Because I almost always say No.
So that can get me down. Can you imagine reading those statements before becoming a parent and thinking Oh yes, sign me up! Can't wait to be such a horrible parent to these poor kids! Oh the therapy they will need when they grow up! Dysfunction - bring it on!
So I consciously pull myself out of these thoughts once again. I'm here. I exist in their lives. I can listen to them on a daily basis - maybe on my terms, but I can. On the rare occasions I can pull myself together to play a game with them or read to them, then I do. I embrace those times and go for it and it's amazing. With all the knowledge I have gained as I heal, I am teaching them how to take good care of their bodies. To hear their bodies. I'm teaching them that it's not money or popularity or stuff that matters. We don't need any of that. It can be fun sometimes, sure. The people around us can got caught up in it and make us think we need it too. But it's not what true happiness is built on. These lessons come up over and over again.
I'm blessed to have these fabulous kids in my life. They are a ginormous part of what keeps me going. Like the woman in the article says - faith, family. These are the biggies for me too. I just hope the good that I'm teaching these dear children outweighs the negativity they face on a daily basis. I really do.
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