The Lessons I’ve Learned From My Children’s Rare Disease

When I imagined having children, I imagined a lot of things: the kind of mom I’d be, the things I’d do with my kids and the things I wanted to expose them to. I’d be the library mom, the museum mom, the travel mom, the choir mom. I did not, however, imagine myself as the “PI” mom.

I have four children, ranging in age from 5 to 16, all of whom have primary immunodeficiency (PI), a condition that leaves them highly susceptible to recurrent infection and illness. Before each of them were diagnosed, I had a gut feeling something was wrong based on the number of infections they each had, and the way one infection would lead to another. A cold would lead to an ear infection, and then bronchitis. It took multiple rounds of antibiotics to clear up the infections, and within weeks we’d begin the same cycle again.

Finding a diagnosis for my children wasn’t easy. When I told our pediatrician that I thought we were missing something, that there was something more to their recurring infections, he told me I was overreacting. I trusted my gut instinct and found a new doctor, and while he didn’t know what was causing the infections, he trusted me and we worked together to find the answers.

Looking back over the past 14 years, from the day we first received a PI diagnosis to today, I clearly see the lessons I’ve learned along the way.

1. PI is what they have, not who they are.

In the beginning, I worried about everything. Would they go to school? Would they be treated differently? What infections would they get? Some of the things I worried about were reasonable and some were not, but I didn’t know enough to know the difference and knowledge is power. So, I dug in, found a national foundation that focuses on PI, joined a support group, and learned the language. When I was at my most vulnerable was when I didn’t know how to access support or resources. As I became empowered, it got better and I learned an important lesson: my children’s rare disease is what they have, it’s not who they are. My children are not defined by their chronic illness; they are students, siblings, singers, actors, historians and science lovers, but they are not PI.

2. We choose our attitude.

When I first learned that my children had a rare disease, I was overwhelmed at best. I had never heard of PI, and was worried “rare” meant different. I wanted my kids to choose to be different than their peers, not to be forced into it. But rare, according to the dictionary, can mean both infrequent and unusually good or remarkable.

We may not choose the medical path our children have been given, but we do choose our own attitudes. I choose to focus on what living with four kids with a rare disease has given us: unusual courage, incredible strength, empathy and a remarkable confidence that comes with not trying to obtain “perfection.” Rare has two meanings, and we can choose which one we subscribe to.

3. Acknowledge the hard days.

Even with the best treatment plan, exceptional doctors and unconditional support, some days will be hard. Days when my kids are sick, yet again, or when their peers don’t understand why they have to reserve energy. We don’t push those days away, we validate them. We acknowledge that the struggle today is the strength for tomorrow, but that the struggle today is still a struggle. “Today is a bad PI day,” they’ll tell me, and I just hug them and say, “I hate bad PI days.” I’m never going to tell my kiddos that having PI is easy. I need them to trust me, and if I dismiss their feelings on bad days, they may not trust me to tell them the truth when it’s hard.

4. Independence is key.

I realized early on that my children are going to be adults with this disease, and started teaching them about being their own advocate. As much as I love them and they love me, they don’t want to live with me forever, and I need to know they are prepared to be independent adults. Over time, I’ve tried to teach them critical skills like how to make a doctor’s appointment, how to run their appointments and how to order their supplies.

The hardest thing I’ve had to do recently is let them make their own mistakes, like forgetting to ask their doctor something at an appointment. However, now is the time for them to make those mistakes, when they still have me there to step in and help them. Soon those mistakes won’t be made in the safety of my home, but in a college dorm room, and I want them to learn how to problem solve the inevitable issues living with a rare disease brings. Because as much as I loved college the first time, I can’t go back and do it with them.

5. You are not alone.

For me, nothing was harder than feeling like nobody understood what we were going through, but eventually, I found my tribe of people that “got it,” because they’ve lived it. My tribe supports and reassures me on days that are hard, and calls me out when it’s warranted.

It’s been 14 years since the first of my four kids was diagnosed with PI, and instead of feeling alone and misunderstood, I spend much of my time listening to and offering support to others. I do this not only as a parent, but in my job as well. This is not to say I have all the answers; I still have days when I ask for help from another parent, or when I need advice from an adult living with PI. However, I know now who to turn to. I know that we’re not alone.

A healthy immune system is key to living a healthy life. Shire is a leader in providing support to those with rare diseases, such as Primary Immunodeficiency (PI). Shire offers a broad portfolio of immunoglobulin (IG) products and support services for people living with PI. Click here to learn more.

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