Fighting the Chronic Illness Battle Alongside My Daughter

You know that saying, “You don’t know how strong you are until being strong is the only option you have?” Well, that is the story of our lives, the words we live by, our “family anthem.”

I have lupus, and am now battling CNS lupus in which my lupus is attacking my brain, nerves and nervous system, causing me to have facial droop off and on, be unable to walk at times and, just last week, I was unable to see for three days. I’m on chemotherapy — Cytoxan with combination of Rituxan and other immunosuppressants — to try to treat this miserable disease.

If you think that’s hard enough, imagine going through this battle and then watching your daughter just starting to fight her own battle at the same time. My oldest daughter, Hailey, who is 17, just started her difficult journey. After having been diagnosed with Graves’ disease and battling thyroid cancer (and just last year she had a thyroidectomy and a parathyroid gland auto-transplant), Hailey is now battling new slew of autoimmune diseases: mixed connective tissue disease (MCTD) with a positive test for SLE, scleroderma, polycystic ovary syndrome (PCOS), Celiac disease and chronic fatigue.

We have days where we just lie in bed together. As I lie with her, we both try to encourage each other: “We can do it, we got this, let’s get up!,” like two cheerleaders cheering on the same team of doom. I see myself in her, and I cannot imagine her going through what I am going through now.

Our days are spent going to each other’s doctor appointments, specialist visits, treatments, labs and x-rays, like it’s our full-time job. Our 45-minute commute to the medical center is spent talking about our symptoms of the day, writing down questions for the doctor and listening to our favorite music in the car as we complain about our aches and pains. My kitchen’s chalk board is usually full of the “medical things to do” that month.

My husband works in the oilfield industry so he works mostly out of town and state, leaving me to care for Hailey and our youngest daughter alone. At times, I do feel as though I am a single parent – to no fault of my husband. He is the only person in our family working after I had to resign from my job. He cannot afford to take days off because of our expensive treatments, the hospital stays, surgeries, the chemo and copays. Being chronically ill is expensive and financially draining, especially if there is more than one of you in the household battling illness at the exact same time. Therefore I remind him that his job is just as important as mine. Even though he is there and I am here, we are in this together.

Some days I’m so weak due to my leg tremors that I can barely walk. My hands shake and my body is in tremendous pain. Those are the days Hailey will drive us around, and though she’s not feeling well herself, she reassures me, “It’s OK mom, you are feeling worse right now.” She holds my hand during my chemo treatments or infusions, then I hold hers when it’s her turn.

I remember when she was in the hospital after her thyroidectomy and parathyroid transplant surgery, I would go across the street for my infusion treatment and then rush back, physically struggling, to be by her side. I would lie in the fold-out chair next to her, and both of us would be lying there, quietly, each fighting our own battle.

We have this unspoken support for each other. We know we both are going through a lot, but we never, not once ever question it. Anytime one of us needs to go the ER, we just do it. It is like second nature. Even my youngest daughter who is 14 knows the routine: text or call Dad to let him know and make sure she is by the phone just in case one of us calls with updates. It’s a routine that’s become “normal” to us.

Some people tell me I am so strong, or they can’t wrap their minds around what we go through. My husband’s coworkers ask, “How do you do it, being here and not there?” You know, we have never actually thought about that. You honestly cannot understand what it is like to go through this type of situation until you live it. I’m not just “strong” – I’m a parent and I don’t have a choice. I would like to think any parent would do the same.

I’m not going to lie and say I have never broken down and cried. I’ve broken down quite a few times in the car, and so has Hailey, my husband and even my youngest daughter, who recently said, “I wish we could all go back to being happy and healthy.” It’s not easy hearing that. As a family we do miss out on a lot fun functions and activities. Hailey can no longer play sports. We don’t go hiking or camping anymore. Most of our family time is spent being sick at home or in the hospital, but we never wonder, why us? We just accept it and we always get through it. Our family of four has this bond that is unbreakable, and being strong is the only option we have. We take one day at a time, fight one battle at a time and stay strong one day at a time.

Thinkstock photo via Kikovic.