Parenting with a chronic disease

It’s taken me a couple of weeks to be able to write about this story – it’s a hard one to talk about and to share – at the same time heartbreaking and uplifting to me.

I’ve written before about talking to my kids about my disease and health struggles.  For a while I tried to keep it all from my kids – not expose them to it – keep them kids as long as I can without worries of disease and pain.  But then I realized that wasn’t right either – things were obviously changing in our lives and they needed some type of explanation as to why.  That’s when we started calling it my “health issues.”

Slowly over the last year they’ve learned more about it.  They know that it’s the part of my body that usually fights the germs and illnesses but that it’s fighting my own parts instead.  They know it causes pain, dry symptoms, fatigue.  They know that the medicine I’m on isn’t working and that it’s been frustrating.  I’m honest with them when they ask me to do something – like those crazy loom band bracelets that thank goodness we’re “over” in my household – that I just can’t do because of hand pain or dexterity.

They know I’m frustrated with my current (actually past as I’m not going back to him) doctor and that I have an appointment in Philadelphia in December to see a specialist.

They know that I had that horrible headache for two months and were happy with me when it “broke” (the headache “breaking” feels just like a fever when it breaks – relief!) as I discovered the issue and I’ve worked on my jaw clenching.

Both of my children are bright and caring people and show genuine concern when I do let them know that I’m having a particularly hard day (it has to be a really hard day before that happens – I’m still not good at sharing my pain/fatigue levels on medium or medium-hard days yet – I still tend to hide that from people).  My son has always been especially empathetic, even from a very young age – very tenderhearted and concerned about others.  He left his childhood Pooh Bear stuffed animal that he used to use to comfort himself when he was little (that these days is usually flung to the corner of his bedroom – too old to acknowledge it on a regular basis but not ready to get rid of it) on my bed one day to help me feel better when I came home again with a headache.

But even with such kind and understanding kids, I still have very active concerns that they are going to look back on their childhood later in life and think that I wasn’t there for them enough – not active enough, resting too much, etc.

So a few weeks ago (at the height of my chronic headaches), I was at the kids’ school before their school carnival setting up the ticket-sales booth I was working at.  I ran into the main office to ask for some pens and the principal mentioned that she was in my son’s classroom (6th grade) the day before and that he was sharing about me.  I was surprised and asked what he was sharing about.  She said they were talking about people that “lived above the line” (the phrase that ties in with their character education and behavior code, etc.) and about people in their lives that were brave and that he talked about me and how I’ve had a hard couple of years.  He talked about how every time we think one thing is getting better or under control something else starts to happen and that we just can’t get things better.  He shared about how I’ve done all that I do to take care of the kids and be supportive of them even though I’ve had a really hard couple of years.

On the one hand that’s completely heartbreaking to me to know that my sweet children are having to deal with chronic illness in their lives. (I just realized that this post is making them sound a little angelic.  Don’t get me wrong – they’re still kids that are normal kids…they frustrate the heck out of me at bedtime, pick on each other when they get bored, drive me batty in a million small ways like kids everywhere do to all mothers!  But they have good hearts and I try to frequently let them know that I’m proud of the people they are – of the hearts they have.  They’re kind and caring).

To know that it’s impacting them to the point that my son (whom has just as hard of time verbally voicing his feelings and concerns as I do – I write in these blog posts to get my feelings out, he writes me notes when he has something he needs to express to me) would share it with his class and teacher is gut wrenching.  To know that he’s that aware of it when he should be carefree (or at least his cares should be about childhood things – not illnesses!) is just wrong.

But a part of me finds it reassuring.  He talked about me while they were sharing about people that “live above the line.”  He shared this information when discussing people that are brave in their everyday lives.  Maybe I am managing to make my kids feel loved and supported despite my fears of this illness causing  me to not be there for them like I’d like to be.  I sincerely hope so, because other than having safe and healthy kids, that’s probably my number one wish for them.

One thought on “Parenting with a chronic disease

  1. Your kids sound great, especially your son. I hope the new rheumatologist will be a bigger help than the last one

    I still feel guilty about neglecting (in my mind) my kids when they entered their teens. RA had such an effect on me before it was diagnosed and effectively treated that sometimes I would come home from work and just fall into bed from fatigue. In all the years since I have never felt that bad again.

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