A few weeks ago, I spoke with local parents about the up side of the government shutdown. One of the mothers I talked to mentioned that she was doubly concerned about the furloughs because her doctors and treatment were at NIH, which was mostly closed.
Our conversation led me to wonder: What is it like to be a parent — with all the worries and struggles that go along with that role — and have a chronic disease, with all the worries and struggles that go along with that role?
Kathryn Ferguson blogs about this issue at Pilgrimage Gal. She is a parent to Ian, 10 and Norah, 7. A wife to Jeff, who works for NOAA. And she has a disease that makes it impossible for her to be outside in the cold, or even stick her foot into a cold swimming pool on a hot July day. In addition to being a mom and wife, she is a full-time advocate for herself.
I spoke with her this week about how she manages parenthood combined with chronic illness; an edited transcript of our conversation follows.
When did you discover your illness?
Both pregnancies were total nightmares. I was in the hospital on bedrest with both kids, and then when my son was six days old, I had to come back into the hospital with Bell’s Palsy. I was on bedrest with Norah much later than with Ian. But four days after Norah was born, my lungs were filled with blood clots. The first two weeks of her life, I was in the hospital really struggling to be well.
Then I had a nice little honeymoon period for about a year and a half, two years.
[And then] I had a really bad experience on a January day where I became very short of breath. I began having multiple events where I was landing in the ER because I couldn’t breathe.
What were you diagnosed with?
Cold urticaria. It’s an allergic reaction to temperature. For some, it’s an annoyance. For me, it’s life-threatening. To get a roast out of the fridge and put it into a pan to bake gives me the hives. Going to the grocery store if I’m not completely bundled up gives me the hives. I went to NIH and met with teams at Hopkins, then back to NIH. I’m now being seen by the Human Genome Project. . . But I’m the happiest sick person you can ever meet.
How old were your kids when you were diagnosed?
It’s only been three and a half or four years since we’ve been able to put a definitive [diagnosis] on it.
How is your role as parent impacted?
They have never known a time when they haven’t had a scary sick mom. When cold attacks happen, I go into anaphylaxis. After a really bad attack and I’m stable, I have this unbelievable fatigue that sets in and I sleep. I can’t be at outdoor events. [Starting] around Halloween, I’m out of outside activities. Once Easter happens, I can pop up outside again. I’m relinquishing the normal mom things we all love to do. I can’t go to the pool and I’m a fantastic swimmer. I can’t go to Baskin Robbins. NIH is doing a great job keeping me stable, but has not been able to dial [the condition] back.
So how do you parent?
Now that they’ve gotten a little older, one thing that’s helped is they have seen the result of exposures and know we have to make choices as a family. So sometimes I don’t get to go to the zoo, but I can be at home making the cookie dough so when they get home, we can do that. I’m an amazing arts and crafts mom. And when it’s really, really tough, the kids get into bed with me and play Uno or we read. While I’m not the most normal of moms, I’m an exceptional mom. We had to create new family traditions, and what’s normal for us is not normal for the majority of our friends.
When did you start the blog and why?
The blog started in June of 2012 at the request of Jeff, because I was so sick. We didn’t know how bad things were going to get, and I wanted to make sure that I gave them a real-time report of life in the trenches when they were little. So when they are adults, whether I’m lucky enough to be here or not, I wanted them to know what I was fighting for and every day of their lives I got up with the sole purpose of trying to be the best mom I could be for them.
What advice would you give other parents with chronic illness?
There are three things that keep me healthy: faith, family and an amazing medical team. I’m Catholic and so I practice. For other people it’s other things. I think you need to have that spiritual component where something is bigger than you. And family, it’s even more than just spouse and kids. On bad days, my girlfriends are coming in and out, dropping off kids, bringing dinner. When I’m too sick to drive to a doctor’s appointment, it’s those girls who drive me there. And then there is the medical piece. I have worked so hard to build a team that is comprised of key doctors I can contact anytime that know me. These are people I trust so when they say they’re putting me in the hospital, I’m going.
How do you communicate with the kids?
I am extremely transparent with my kids. I took them on an NIH field trip this summer. They need to understand what’s going on with mom. They know if I’ve been in the hospital, they know when I have tests. I don’t want my kids building their own narrative about mom. I want to make sure the info they get is from me and my husband. Anxiety is lessened by the truth.
And I think it’s important to be straight with your partner. There is no “Kathryn job” and “Jeff job.” It’s all “our job.” Because of that, we can cut right to it. We’re just honest with each other about where we are and we take care of us as a couple. Sometimes that means watching a movie in bed together. It’s not bar-hopping like we did in our twenties. It’s about the partnership.