“I’m sorry, Mommy doesn’t feel well. I can’t right now”
Being a parent is tough. Being a parent with a chronic illness sometimes feels impossible. Finding balance between caring for children and caring for yourself is like walking a tight rope above a pit of hungry alligators. It can be done but it definitely isn’t easy. How do I know? I am a mom with two little ones at home and I am a rare disease warrior.
Above all else, I am a mom. Secondly, I am a rare disease warrior. I have two beautiful children still at home, Audrey (6yrs old) and Aiden (almost 5) and two older sons (21 and 18) that live outside the home. They are my world, the reason I fight everyday against this disease that tries to take over my body.
My disease is Sarcoidosis. Sarcoidosis is a multisystem inflammatory disease involving the abnormal collections of cells known as granulomas. These granulomas can interrupt the function of organs causing many symptoms and even organ failures. There is no known cause and even though some treatments may help with symptoms, there is no cure. It is a chronic rare disease that lasts a lifetime and may even become terminal for some. My involvements to date are mostly lung and neurological.
I was first diagnosed with sarcoidosis about 13 years ago. Like many others who are diagnosed with this disease, the doctors first thought it was cancer. I felt a great relief when my biopsy surgery came back as not cancer. But then the fear stepped in. If it’s not cancer then what is it? How do I live with it? What can I do? For many years my symptoms were minimal. Coming and going every now and then. It was fairly manageable with no real “bad” days. Until last summer that is.
Around August 2016 I started getting a neuro flare. I became very ill. At the time I had a pretty good job, I was very active and life was going well. It all started with extreme fatigue and horrible headaches. Debilitating headaches. I could no longer function. I couldn’t work. I couldn’t be active. I couldn’t be the mom I had been. Everything changed for our family. I basically became couch bound. I couldn’t do anything. It was time to see my doctors. It was time for aggressive treatments.
My doctors did all kinds of tests and put me on several medications trying to get this flare under control. With the medications came side effects. Miserable side effects like uncontrollable weight gain and mood changes.
During all of this I still had to find a way to be a mom. A good mom that’s active and involved. But how? I was so sick. My poor kids would come to me asking to play and all I could tell them was, “I’m sorry, Mommy doesn’t feel well. I can’t right now.” It was heartbreaking. I tried to explain to them what was wrong. I tried to be as normal as I could. It was hard to do though. I had no energy and the pain I was in was excruciating. I had to find the strength, I had no choice. I forced myself to put on a smile and do everything I could. I would wait until the kids were in bed and pray followed by breaking down crying. I asked what did my kids do to deserve this. I knew it wasn’t my fault I was sick and I didn’t ask for such a difficult path in life but the feelings of not being good enough were overwhelming at times. I did the best I could.
It took at least 4 months for my medications to start to control my symptoms well enough that I could see a glimpse of recovery. During those 4 months I concentrated on the little things. Spending quality moments with my kids gave me more and more strength. When I was too tired to get up and play we would cuddle and watch movies or read their favorite books. As more energy came to me we would add a few more small activities like crafts back into our daily routines. We still aren’t back to being “normal” but we are on the right path.
“We are only given what we can handle. I just wish He didn’t have so much confidence in me.”
This time in our lives has been difficult. Learning to adapt to the “new” me is both physically and mentally challenging for all of us. Balancing what I need to get better with what Audrey and Aiden need has been and will always be a struggle but it can be done. Being a mom while being chronically ill can be done.