The old saying goes “When momma ain’t happy, ain’t nobody happy.” And we all laugh a bit because there is a trace of truth in it. But what about when momma is sick and not getting better, how does her family feel then?

Six years ago I was diagnosed with a rare autoimmune disease. I was told that the prognosis was grim after six years and most patients face morbidity at ten. At the time, my children were barely six and seven.

News like this changes your entire world. 

It is easy to see how my outlook and priorities would be changed. But as I faced my diagnosis that day, what I didn’t see was how my children’s outlook and priorities would also be altered.

Over the last six years, this disease has been a constant struggle for me, but it is nothing compared to what I feel when I see how my children struggle with it. My kids have very few memories from before life was shaped by how their mom felt. All they really know as life, is answering every question by how I’m doing in this autoimmune battle.

Can we play outside?

No, the sun makes me sick so I can’t go out and watch you.

Can we go to the carnival?

No, I’m having a flare-up and hurting a lot.

Can we go to a friends birthday party?

No, I’m on a new treatment and I will be sick.

Can we eat out?

No, I am on a restricted diet in hopes that it will help me.

If mommy guilt is bad when are healthy, imagine the weight of guilt when your illness is making it hard to be a mom.

When mom is sick, everyone has to help her do the things that moms do, like make dinner, wash dishes and laundry. When mom is sick, despite our best efforts to be the caretaker, kids end up taking care of things too.

The worst part is that when mom is sick, everyone is scared.

My children watch me closely when I am having bad days, and though they work hard to hide the worry on their face, I know it’s there when they turn away from me. I see them watch me with nervous concern out of the corner of my eye when I am in pain. They have had front row seats through hospitalizations and surgeries through the years.

They stood, huddled in fear, next to my hospital bed as I had an anaphylactic response to medicine, watching to see if I would die.

I will never forget the fear in their faces as doctors and nurses ran in on top of each other trying to help.

Their anxiety is heart-wrenching as they mature and come to understand the reality of my illness. 

When mom is sick, the whole family hurts. When mom is sick it also changes her children’s lives in other ways. My kids are empathetic and open-hearted because they have been trained to care. They are helpful and responsible because they have learned to be cooperative. Recently, my twelve-year-old son had a friend come to him with a serious secret. Before they would tell him what was going on, they wanted to make sure it would be accepted so they asked him how he would feel if he were told that someone he knew had a serious illness.

My son told them, “I would be fine with it. My mom is sick, she has an invisible illness, so she looks okay outside but she is really sick inside.  It’s an autoimmune disease and she will have it the rest of her life. I help take care of her and help her save her spoons so I already know how to be a really good friend to someone with a serious illness”.

As he shared this story with me, my heart swelled with pride. Yes, when mom is sick her children are forced to mature in ways that she would like to protect them from, but also when mom is sick her children are forced to mature in ways that develop character and kindness in them.

Moms are the thermostats of the home. We don’t just read the temperature like a thermometer, we have the power to adjust the climate around us. We can tailor our children’s attitudes in everything by the temperature setting we create, including how they face our rare diseases. Being a sick mom has taken away a lot of what I wanted to do and be as a mother but it has not taken this ability from me.

I smile, laugh, and love so my children will too. I live my best life and sing, joke, and dance when my joints allow, not only because I know life is short, but because if a sick mom can face it that way her kids can too. Even on days when it is too hard to get out of bed, we call it special pajama days and my kids climb in bed and watch movies with me, sometimes I sleep and they watch, but it’s still a time of closeness and caring.

When mom is sick, everyone feels it. The one card I do have to play is teaching them how to take this thing that none of us wanted and walk through it with positivity, grace, and dignity.

When mom is sick, the whole family suffers. You may not be able to always be the mom you want to be because of your illness, but you still get to be a thermostat, and when momma sets a nice temperature the whole family feels better.

Keep an eye out for more thought-provoking stories by Nikole!Check out her blog and her other PW articles:

Meet Nikole, A Holiday Confession Part One and Two , The Secret to Change, Being a Bad Patient Saved my Life Part One, Two and Three.

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