Parenting While Chronically Ill

So, over the past year or so, I’ve written a whole lot about how hard it is to parent two chronically ill kids. But, I never really take time to talk about the other side. What it is like to be a Chronically Ill parent, period.

Sick kids aside, I’m having a hard time parenting.

I have a Master’s Degree in Human Development with an emphasis in Youth Spirituality and Creativity. I think most, if not all of the students I worked with for the years before I had my son, would tell you that I was damn good at what I did. I taught parenting classes, held teen parenting groups, taught crisis prevention and intervention. I worked with teen violent offenders, sex ed and I coached contest speech. I was good. I still am.

I thought I would be good at parenting. I think I was until I ran out of energy to be consistent.

We had a social worker over the other day to help us with behavior issues and structure. I’m a little resistant to their “time out” strategies, which were proven years ago to be an ineffective cooperation tool and steeped in punishment and shame, regardless of how sing song you make your voice.

I don’t like the idea of having people teach me what I already know how to do. It isn’t the issue, me not knowing how to be a good parent. The issues are physical. They have to do with no energy to parent.

I’m exhausted from being ill. I can’t get dressed without help. I’m too tired to work. I’m too tired to cook. And, I’m too tired to be a consistent parent.

How do I change that? What do I do? I know when I’m at my limit. Last spring I sent the kids to my in-laws and my brother for a week over spring break. But, getting help for people who are chronically ill is hard. My kids spend a whole lot of time alone. We are isolated. Like shut ins. We run necessary errands. Doctor appt. School visits. We rarely do anything fun. The little guy averages one playdate a week. I can’t go to pool parties and birthday parties and storytimes, so my son doesn’t get to. He isn’t getting the life that the big one had. We don’t have the resources to go to the museums, the parties, the shows, the parks.

I want to be in a place of abundance. Of joy overflowing. Of hope and belief. I’d like to find a balance between the sad, exhausting truth and the denial of Pollyanna. I just want it to be easier and instead, it gets harder.

My children test me, they hurt each other, they piss me off. I get mad, I offer consequences and I’m too exhausted to follow through. I make chore charts and med charts and I beg for their co-operation, and then I realize it is just easier to let it all go. . easier just to do it myself or to not do it at all. Easier just to beat up my body by doing it myself.

I can’t do it all, but I don’t know how to simplify. I work on getting help through my insurance, and it takes an acrobat and a track star just to get 1/2 half there. Half way there isn’t helping.

And this is not the life I want for me, or my kids.

I want my kids to go to the Zoo and the MIA and The Walker. I want them to go to Valleyfair, enjoy a family vacation (we haven’t had one since 2006), have their mom go to one of their concerts. I want my son to attend Kuk Sool Wan, or Karate, or Capoeira, or Trapeze class. But I’m tired. And the funds just aren’t there. This week, for the first time, the big kid rode the bus home from his choir rehearsal. I’m too tired. I just can’t keep it up.

And yet, my children deserve to be normal. They are fighting these infectious diseases with all their strength, and I so wish they could have more fun. But I’m tired. Parenting is so, so, so hard.

It’s the weekend, again. Come Monday morning I’ll see all the pics on Facebook. The lake visits, the parties, the BBQs with friends. I’ll see the adventures, the fun, the park times. I love seeing life happen. I love facebook, but I long for an engaged life. One that isn’t full of isolation and disengaged kids.

I want to be invited places. I want to go on dates with my husband (we haven’t had one in over two years–and you wonder why things are so hard), I want to go on a yoga retreat, or a silent meditation retreat, or just have a day to myself.

But this is my life. I’m just trying to be graceful and open myself to all the lessons, but it is so, so, hard when I can’t be the parent I want to be.

Kids are resilient. Even though the science shows that they will likely never be free of Lyme & co, I hope they will fully recover from the inconsistent parenting.

Next Post: Ways to Help A Chronically Ill Mom

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8 responses to “Parenting While Chronically Ill

  1. So true Jeanne. As you know both my kids are the same ages as your boys. Yes we all have Lyme too. Parenting is tough , parenting when you have a family all infected with the same debilitating disease is almost impossible.. but not quite, and it is the not quite part I hang onto.

  2. thanks for sharing this with us…the task of being a parent is hard enough without the complications of Lyme & co. I’m praying for you and your family.

  3. I hear you on this. i also had a social worker come over to help me with behavioral issues. I tried, failed, tried failed. And once I got a lot better healthwise, the house stayed clean, the discipline got consistent and the boy got good. Not perfect, but good. And then I relapsed… The behavioral therapist was amazed at how much better behavior was, and I was, once we were both treated for a 6 months plus. It was incredible. I hate what Lyme does to my parenting. When I get desperate and behind, I drop off my laundry to be done and then I clean the house in the few hours it takes them to do the laundry. It helps, but I don’t have the money for it. And if you don’t have the energy to clean, it’s not going to help.

    I also got rid of about half of our stuff. I either donated it or put it in the attic. Less stuff equals less stuff to take care of/clean. We stripped down to the bare neccessities. It helps, but it doesn’t solve the root problem, that you’re sick.

    My heart goes out to you and I look foward to the coming post about ways to help.

  4. Also, whenever I read your posts, I wish I lived close to you. I would love to come over once a month and clean, cook, take care of whatever chores you can’t get to so that you can enjoy some downtime with your kids and husband. My own health is up and down, but when it’s up I would love to be able to help you out. For now, please accept my virtual hug.

  5. very thoughtful post…
    I too am tired and worn down..
    attempting to “plan my school year” because as the addage goes…
    those who fail to plan, plan to fail…
    and…
    i feel like at least if there IS a plan..
    any plan…
    i have SOMETHING holding us up…
    parenting IS hard

    parenting with a chronic illness is VERY hard
    parenting with a chronic illness those who ARE chronically ill…
    is just…
    well…
    a feat
    praying for you…
    you … are NOT alone

  6. Thank you for sharing!!

    We are starting a blog and a blog roll at Tombolo. Tombolo is dedicated to helping families of children with ongoing health conditions by connecting them to high quality community resources, mobilizing their existing support networks and providing volunteers to address their unmet needs.

    We write about issues related to chronic illness, families, health care, parenting, siblings, communities, and more. We have an inclusive approach to thinking about supporting families.

    If you would be willing to post a link to our blog, we’d be happy to post a link to yours as well. Your writing is superb and your voice in needed! So again, Thank you.

    We will be listing blogs here: http://tombolo.mn/resources/blog_roll/. Just send us the link and a 1 sentence-ish description.

    Thanks!
    Nora

  7. Couldn’t have said it better myself. Thanks for sharing, even if it did break me down to tears. lol

  8. I have never met or come into contact with, in any form or fashion, anyone that has a similar life to mine. I am so sorry that you and your family are dealing with so much but I can’t describe how it feels to know that I am not alone. My family and I suffer from different illnesses than yours but I can relate to your feelings and thank you so much for making my day brighter and much less lonely.

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