When my son was diagnosed with Still’s disease (aka SJIA) at the age of 11, life suddenly became very different for us all.
Seven and a half years. That’s how long I’ve been a mama bear. Mama to a child with a chronic illness.
Years full of doctor appointments, trips to the pharmacy, tests, scans, and adjusting plans because of pain. Years full of injections, pills, infusions, and joint braces. Years full of inflammation, stiffness, physical pain, and emotional pain. Years full of heart and lung involvement, hospital stays, side effects, compromised immunity, and stunted growth.
Years full of not realizing just how strong I am. Because strong was the only choice I had.
I went through a period of mourning for my once healthy child. It’s completely normal for mama and papa bears to grieve the loss of the healthy child that they thought they had. You realize the future is irreversibly altered and restricted by the illness. That is, after you realize that no, this isn’t going away.
After a while, the shock wears off and you begin to adjust to your new “normal” life. It’s not normal by society’s standards, but it’s now normal for your family.
Yes, it affects the whole family. Siblings suffer because mama bear needs to spend more time and energy on the sick child. Their sibling suddenly gets all the attention, to the point that other people start asking about the sick child and seem to forget that the healthy child has a life too.
What I hadn’t done until today was reflect on how our life has changed, and exactly what was lost.
This was taken 3 months before Still’s. I didn’t know that would be the only year his sister would cheer for him.
I know now that my former athlete missed out on years of baseball, basketball and football. My student missed out on the high school experience because he couldn’t attend public school. My social butterfly missed time with friends because he was at yet another doctor’s appointment, or sick because of his compromised immunity, or in too much pain to participate in their activities.
Our family missed lost opportunities because of medical issues or treatment. We lost the carefree lifestyle that we didn’t realize we had. We lost some of our freedom and spontaneity. We lost a lot money due to medical expenses and lost wages. We lost vacations, and even trips to grandma’s because there was no longer time or money available.
I write, not to gain sympathy or to complain about how difficult our life is. I write to raise awareness of just how different life is when a family member has a chronic illness. I write to remind you that even when we seem to be “back to normal” to the outside world, our lives are still changed. I write to assure other mama bears that their feelings are valid and very common in our community.
And I write to assure myself that my own feelings are valid. My initial denial was normal. My grieving was common. My pain is understood. I am not alone. I have hundreds of sisters and brothers making this journey with me.
And I can continue being strong. Because it’s the only choice I have.
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