I wake up in the morning and the first thing I hear are the little voices that run our household. They are discussing the day ahead as they get dressed. Soon, I hear their little feet racing into my bedroom. “Mommy, we are up and ready to go. How are you feeling? Are you in pain this morning?”
It is still hard for me to get used to the fact that my 6 and 8 year old sons are more attuned to my pain than I am to some of their needs. It hasn’t always been like this. We had a few years where I got to be “Super Mom”. I attended to all of their physical, emotional and mental needs. I was quick with a sticker for a craft project or a Kleenex for a runny nose. However, now, on too many days to count, my boys are the ones creating their own craft adventures and bringing me an ice pack for my neck, back, shoulder, etc.
So, how do I parent with chronic pain? How do I parent while handling the day-to-day issues related to degenerative disk disorder, chronic venous insufficiency and chronic inflammation? How? Well, the best that I can. That is the answer. There is no magic formula. No secret parenting technique. I just do it the best that I can!
Over the last few years, I have identified 3 areas that are crucial in being “okay” with parenting through chronic pain. Guilt, Realistic Perspective and Creative Play are my focuses most days. I don’t strive to be perfect, I just strive to survive. The goal I have everyday is for my children to know that no matter what I love them unconditionally.
Guilt
You can go on any parenting blog, read any parenting book or talk to any parent and you will find that we all experience guilt from raising our children. Are we doing the right thing? Did we sign up for the right activity? Are we listening enough? Did we feed them the best food? Etc. But for a parent with chronic pain, not only do you have all of these common concerns; you have additional sources of guilt. Am I damaging my child? Am I ruining his childhood because I can’t throw a ball or color a picture? Do my children feel less loved because I am in bed frequently? Will my tears harm the children? The real question is how do you turn this off. This overwhelming and damaging sense of guilt. Well, you don’t. But, you learn to acknowledge that it exists and live with it. Yep, live with it!
I don’t “feed” my guilt. I already know that due to my body’s limitations that I carry a heavier load sometimes. So, I acknowledge it. “Yes, I am guilty because I can’t pick up my 6 year old when he is crying”. I work around it. “But, I can sit next to him and be present in his sadness. I can talk to him and I can hug him”. Then, I have to let my guilt go. “It is okay that you couldn’t carry him but you heard him. You connected with him.”
Seems, easy, right? Nope, it isn’t always. It can seem so insurmountable but you just have to take it a piece at a time. Another way I handle guilt is I write down my thoughts. Once they are on paper, I can give them attention if they are legitimate and require action OR I can let them go if they are trivial and unimportant in the moment.
More than anything, I give myself permission to not be a perfect parent, person, wife, employee, sister, daughter, friend, etc.
I give myself permission to let go guilt.
Realistic Perspective
I have been doing quite a bit of anecdotal research in the last few years on parenting with chronic pain. I have read studies on how children are affected. I have read articles on different types of parenting styles for parents with chronic pain. I have experienced my own life in terms of pain. One thing that I have found consistent across multiple platforms is that children are not universally adversely affected by living with a parent with chronic pain. Yep, that is right. We aren’t hurting our children! Take a deep breath and let that sink in. Your children will be okay.
In a small study (with a few design flaws) from 2008 from UCLA Department of Pediatrics, the authors concluded that children growing up in households with a parent in chronic pain “were provided with opportunities for growth”.
Growth is a positive.
My children learned to prepare and cook meals at an earlier age than most because of my limitations. And, they love it. They discuss recipes, help with the shopping and love that we eat their food. Additionally, my oldest has spent the last year designing, building and experimenting with ways to improve my ability to perform simple tasks on the days I am overwhelmed by pain. He incorporates this into his play with Legos, his drawings, Play Doh construction, etc. And, finally, one thing that has been a wonderful bonus of living in our household: empathy.
Both of my boys have an amazing sense of empathy. This empathy extends beyond our four walls. They constantly amaze me with the kindness and gentleness that they show others. Both boys have gone out of their way to make friends with other children that live with physical and emotional difficulties. I am not sure they would be so receptive to the “differences” of others if they didn’t watch my struggles at home.
Creative Play
Now for the practical side of parenting with chronic pain. Play!
The wonderful thing about the Internet is that there are an amazing number of resources for play opportunities for all ages. On the days I am bed ridden, I invite the boys into bed with me to build forts and color or read. When I can’t get on the floor to roll around with them, I bring the play to the sofa or a table. I have found that there are so many opportunities to connect with them that feel normal to us.
It isn’t easy. It isn’t fun. But, it also isn’t impossible. Parenting can be a dirty business but it is the messes that teach us to look for solutions, to appreciate the strengths in ourselves, and to value our differences. The most important thing I feel I can do as a parent and a parent with chronic pain is to connect with my children on an emotional level. 30 years from now, I am confident that my boys will remember us reading stories about dinosaurs and not that mommy had to be propped up on the sofa. I think they will remember the hugs and not the way my arms shake when the nerves are inflamed. And, I think they will be amazing humans!
