Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
How chronic illness changed my parenting style
“Do you need a glass of water Mom?” The question, from my youngest son is no surprise, he’s a very kind little man. His response to my answer of no, however, does take me a bit by surprise. “You never need me to get you stuff anymore.” It’s not just the statement of fact but the clear disappointment in his voice that strikes me. This amazing human I’m raising misses helping me. He misses getting my drinks when I could not carry them, he misses helping me open things. He’s grown up helping out and feels the loss of my need for assistance. Sometimes it’s the simplest of conversations that shift our perspective isn’t it?
For years I have wrestled with the kind of parent I have been to my boys. Not because of any major failings, mind you. Both of my boys have had the constant love and support of a Mom who believes in them, that has never changed. No, my internal battle has been over the things their Mom could do, and even more so, the things she could not. Because they are 7 years apart and rheumatoid arthritis became severe a few years after the birth of my second son, it has often felt to me like my boys have two different Moms.
Bottom- Standing on top of the world, MDI, Maine
My oldest grew up with an active Mom, she got down on the floor to read and play, ran in the backyard, hiked the beaches and trails with him. Life was an active adventure filled with shell hunting, kite flying, and long walks. An only child for the first seven years of his life, he tagged along to study sessions and often joined me in the field to collect data for some college project. His Mom was always moving, always doing, working, studying, driven. While she did have RA (though she was years from knowing) and there were some bad days, some aches and pains, she was still pushing through. When he was two the doctor told her to stop stooping and kneeling and she laughed at him, knowing she couldn’t do that, so she changed the way she got down on the floor, stopped taking the stairs and saved her knees for playtime with him. He never knew when she hurt, she never needed him to help. By the time RA really reared its ugly head, he was a teen, already well-formed, with a decade or so of active Mom memories to carry with him.
My youngest has no memory of that Mom. He never really got to see that side of me, not that he would recall. There are pictures of us, camping, hiking, playing on the beach, but he was too young to remember those days. The truth is those pictures were taken on the good days. By the time my second son was born, my body was already starting to cave on me. I remember nursing him as every joint in my arm cried out. By the time he was a toddler, the knees that had been troubling me since my teens hurt most of the time. They no longer tolerated squatting, stairs and hills made them scream. Getting down on the floor to play or read together was rare. His younger years are filled with adventures that were followed by days of Mom recovering, barely able to move, exhausted and in pain. As he grew, those days of adventure shrank, and the bad days began to outnumber the good. By the time he was five, his Mom was disabled, depressed, terribly sick, and always in need of help. That’s the Mom he knows best. The Mom who needed him to help her get a drink. The Mom who turned every household chore into a team sport, doing the parts she could and getting help with the parts she couldn’t. The Mom who struggled to get through the days. It’s weighed heavily on my mind, that shift from adventure to precaution, from giving to taking, from living to existing. I’ve spent many nights worrying about all the things I didn’t do with him, all the adventures we haven’t taken, how much I rely on them and their Dad to get through the bad days (months and years).
I was so busy worrying about how my deteriorating health burdened them, I didn’t really notice how it blessed them. He misses me needing him to get me a drink. How sweet is that? That needy Mom, she raised helpers. She raised thoughtful, attentive, gentlemen who open doors and help when they see someone in need. Compassionate humans who can cook, clean and care for themselves, who have seen firsthand how big of a role self-care plays in health and healing. That Mom needed her family in a way many Moms never allow themselves to, and her family grew stronger for it. Closer, more cooperative, more empathetic and understanding.
Now, here we are, on the other side of my roughest years together. With symptoms (finally) fairly well managed, some of the damage cleared up, and consistent self-care and physical therapy, my ability to do has grown and the good days now outnumber the bad. My oldest is grown and out in the world, with a solid foundation of love, support and life-skills behind him. My youngest, soon to be twelve, is at home with me. Our days are filled with homeschooling, housework, laughter and sharing. Soon, it will be spring, and we can head outside for new adventures. I can’t wait for my youngest to get to know the new/old me. The healing me, the adventurous (with a bit of planning 😉 ) me, capable me, tenacious ME. There are woods to explore, beaches to comb, and kites to fly. We’ve so much to do and see, but when we get home, I’ll definitely let him get me that glass of water.
Has life with autoimmune disease impacted your parenting style? Share your story in the comments.
Tenacious ME 
Hi,This article is so useful for me about parenting styles
good job and thank you!!!
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