HUFFPOST PERSONAL

What It's Really Like To Be A Parent With A Chronic Illness

The author and her children.
The author and her children.

My heart stopped one day at the park. It was 2001 and my son, Tyler, was about 3 and running around like crazy, chasing balls and living it up. Kylie, who was less than a year old, pointed to the baby swing, so we moved over there and I pushed her over and over again, higher and higher each time as she laughed out loud and pumped her chubby little legs. Eventually, it was time to start the short walk home so I stopped the baby swing to lift her out of it.

I couldn’t do it. I was 35 years old and suddenly did not have the strength to lift Kylie up ― and I didn’t know why.

I had been struggling for months ― sometimes feeling weak and other times having numbness on one side of my body. The neurologist hadn’t found anything specifically wrong but had me work with a physical therapist. After a couple of months, it still wasn’t helping; I was now numb on both sides of my body. I had just started a new job that required a lot of traveling, so I kind of dropped the ball on therapy. Doctors didn’t know what was wrong so I just did what I do: I pushed on. Some might say that I was burying my head in the sand or shoving the issue under the rug, and maybe I was. Maybe I was hiding from it all.

After having to ask my neighbor to lift my daughter that day in the park, I couldn’t hide anymore. How could my body fail me so and ― more importantly ― how could I fail Kylie? In an odd juxtaposition, I was also feeling grateful. So grateful that I was with my friends who could lift her when I couldn’t, who were there to walk with us home and normalize the situation for Tyler.

Of course, it wasn’t normal and I had to face that. The next morning found me trying to get up the stairs to the kitchen. By the last five stairs, I was on my hands and knees, crawling up one by one. My body was on fire, and I was vacillating between needing to cry and rage and being stoic; I didn’t want to tell my husband ― to say it out loud would make it true. But he was in the kitchen and watched me fall onto the couch when I reached that top stair. The decision about what to do was no longer in my hands.

It meant going to doctor after doctor, each time leaving with more questions and no answers. Meanwhile, I got worse. I crawled up the stairs. I sat down to shower. I couldn’t run and play Ticklemonster with Tyler; I couldn’t walk around bouncing Kylie on my hip when she needed soothing. Hell, in the end, I couldn’t hold my toothbrush or a knife and fork and struggled desperately to hold my arms up long enough to wash my hair.

I crawled up the stairs. I sat down to shower. I couldn’t run and play Ticklemonster with Tyler; I couldn’t walk around bouncing Kylie on my hip when she needed soothing.

Was this going to be my life?

I felt scared, overwhelmed and guilty. Scared that no one knew what I had and overwhelmed by the sheer magnitude of my body’s breakdown. Guilty that I wasn’t able to do everything myself, that I couldn’t be the active mom on the floor rolling around laughing with her kids. I also felt guilty about my husband ― this was not what he signed up for. But none of us had a choice in this. It was what it was. Except I didn’t know what it was.

Summer 2002 came and I couldn’t travel ― I needed help to board the plane to my office in Pasadena. Finally I just had to go to the hospital. I spent a week in each of the three local hospitals. One day I was told it was multiple sclerosis, and I would only get worse. They even sent in an occupational therapist to assure me that there were utensils and hairbrushes that were large and light enough for me to hold. They told me I could put a stool in the shower and a taller toilet seat over mine at home. That may sound awful and terribly depressing, but in truth, it was reassuring to me. Someone was offering me hope of a sort.

I was living my new reality alone. No matter how much my husband wanted to be there for me, he couldn’t understand it. It was like speaking a different language. I tried to explain what was happening, what it felt like, but I also just wanted answers. Any answer was better than none. But it was like I was speaking underwater or in a bubble. No one heard me.

It wasn’t MS. No one knew what it was. Fibromyalgia maybe. Possibly a virus. Psychosomatic, or all in my head, was also an option and seemed to be the best answer for the doctors because it meant it wasn’t on them to figure it out. But it left me not just alone in this but totally isolated.

So I left the hospital angry, dejected and humiliated. In my mind, I was never going to another doctor — I couldn’t trust them. When I went home, I had a physical therapist come and painstakingly teach me to walk again. I learned to adapt a bit and compensate for what I couldn’t do.

I had a rolling computer chair so I had my son push me around on that in the kitchen. He loved to help and thought of it as a new game. He’d even hold my hand while I leaned on the railing to go up the few stairs to the bathroom. I tried to spend some one-on-one time with each kid playing with them, reading to them and just snuggling up and loving them the best I could.

I had a rolling computer chair so I had my son push me around on that in the kitchen. He loved to help and thought of it as a new game.

Along the way, I tried to hide the gut-wrenching sadness I felt ― the “am I more of a burden than I’m worth” feelings. Disease feels singular and lonely. You can’t imagine that anyone else has ever felt these feelings or could possibly understand what you are going through. I also wasn’t that good at sharing or asking for help, which probably made my situation worse. I was lucky to get some part-time help to get Kylie to the park and get the kids bathed. When I couldn’t drive, my neighbor or husband took Tyler to preschool. But even the fact that I needed that help was embarrassing and because I wasn’t doing the preschool drop-offs, I wasn’t meeting other moms.

So I was quiet and silently struggled to stand, to walk, to wash my hair, and I even had to get dressed in short spurts of energy. But I did it. I kept doing it. And I kept feeling alone, like a foreign object shoved into this world that didn’t fit anymore. There was nobody to talk to about this. I was new to the town and didn’t want to be the new, sick mom who has to rely on everyone else. I wanted to be the one tossing the kids in the air, going on play dates and baking cookies. 

My new normal simply wasn’t acceptable. When I wasn’t trying to hide my illness, I tried to adapt to it ― especially as a mother. I pulled a stool over to the stove so I could sit while I cooked ― because by 5 p.m. when the kids needed to eat, I was drop-dead exhausted. Another trick to compensate for my mom failures was that I’d climb in the bath with my kids, snuggling under the bubbles so I didn’t have to lean over the deep tub to reach them. I also used balloons to play with them — I sat down while batting balloons around the room, letting the kids run around as they tried to keep them from touching the ground.

Another trick to compensate for my mom failures was that I’d climb in the bath with my kids, snuggling under the bubbles so I didn’t have to lean over the deep tub to reach them.

Basically, I made my challenges a normal part of life in a way. I thought that if I didn’t make a big deal of it, Tyler and Kylie wouldn’t be scared.

As I worked with the home care therapist, I got stronger and felt better. I returned to work and traveling in the fall of 2002. I still had pain points and got tired easily, but I pushed on. I met other moms, had kids over to our house and even took the kids to the park over and over again. But I had setbacks, so I went back to the doctors in 2004, at 38, when I just couldn’t take it anymore. One doctor diagnosed fibromyalgia and started me on anti-inflammatories. He said I probably had something else but it wasn’t manifesting yet so he wouldn’t treat it. I didn’t go back to him. I asked for referral after referral. It worked.

Finally, I found a doctor who was a pit bull. She was not going to let this go undiagnosed and untreated. She was amazing for me, partly because she simply cared and believed. She performed blood test after blood test. She knew it was an autoimmune disorder so she started me on different drugs until we found ones that worked. Finally, she figured out I have lupus ― and several other autoimmune disorders. Because of course once you have one, you often get more.

Come hell or high water, I made it to the soccer games, to ballet recitals, to back-to-school nights and even to PTA meetings.

My husband was truly relieved to have a diagnosis, to have a name he could use. I was relieved as well if only because I could validate that it wasn’t in my head. I was more excited to find drugs that lessened the pain, that kept my flares shorter and allowed me to have fewer of them. I didn’t want to be that sick mom anymore. So I went online and found some support groups for people with lupus. Over the years, I found them helpful for medication questions or some support, but honestly, they depressed me. It was harder to push on and use mind over matter when I read about all the pain and how many of the moms couldn’t get out of bed. I didn’t fit there either.

It’s been 17 years since that day in the park. I no longer have my appendix or my gallbladder. I missed family camping trips and had to quit my job along the way. For me, it’s the unpredictability that is the worst. I couldn’t really commit to lead a field trip for school or help at a school fundraiser; I struggled through play dates and birthday parties. Now it’s planning a hike or a ski trip. Still, I have an immense skill for looking and saying that everything is great when my legs are struggling to keep me up. It’s still a daily battle ― fine one day and not the next — or worse, fine at one point in the day and then later it overcomes me. Still, overall, my big flares are less frequent and much shorter. I have adapted, adjusted and long ago found my community of moms.

Along the way, one thing was constant. I was determined not to let my illness affect my kids’ childhoods. Obviously, it did. It infiltrated every aspect of my family. There are days I have to lean harder on my husband and my friends. I’m not great at that. It’s hard to explain what it takes to summon up the physical and emotional energy needed for parenting when you have to navigate unpredictable, often scary symptoms. But come hell or high water, I made it to the soccer games, to ballet recitals, to back-to-school nights and even to PTA meetings.

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