Caregiver Story

Karel Schulz

Jean and Karel SchulzJean and Karel Schulz

"Pulmonary Arterial Hypertension" those words are what changed my life completely. I was only 13 years old when my mom, Jean Schulz, was diagnosed. Now, as a thirteen year old, you could only imagine what was going through my mind.

We spent little more than a month in Denver at the hospital. It was pretty hectic for my dad and me to be in such a big city, seeing as we are just some country folk. When mom was released a little after August, we went back home and I started my 8th grade year. My life consisted of helping my mom and leaving every three months for a week to go to appointments with her.

Being in such a small town, and a high school with less than 200 kids in it, everyone "knew" about my mom. Only a few would come up and ask exactly what it was. When I tried my best to explain what it was, I told them it was terminal. They looked at me stunned and called me a liar. That is what I dealt with all year.

"When mom was diagnosed, I wanted to push people away. I didn't want to talk about it. To this day I don't want too, but I still attempt to be a good caregiver. For a teenager, it is a hard thing to talk about.."

- Karel Schulz

When mom was diagnosed, I wanted to push people away. I didn't want to talk about it. To this day I don't want too, but I still attempt to be a good caregiver. For a teenager, it is a hard thing to talk about.

The summer before my freshman year, my mom and I went to California together for the PHA conference. I'll admit, I had a better time at the ocean and Disney Land than listening to medical terms I had no clue about, shaking and nodding my heading and acting like I understood. I was glued to my mom’s hip until she forced me to go to the caregivers room. That was the best thing she could have done.

At first, I was nervous. I sat in a room with husbands, wives, parents, and siblings, all at least 10 to twenty years older than me. When they came and talked to me and asked to hear my story, I told them everything. They didn't question, but asked about school and things to do in Kansas. After they hugged me, gave me phone numbers and email addresses, they told me that I was a strong kid, that I was such a good daughter, and that I was doing all I could. They urged me not to push myself too much and to remember that I was never alone. I fought back tears as they hugged me.

For once since my mom was diagnosed, I didn't feel alone. That same summer, my dad organized a benefit poker run for my mom to help with medical bills. There was a huge turn out and we raised so much money for my mom.

My freshman year started, which meant my life became crowded with school activities such as pep band, marching band, vocal, and my poor attempt at track. I only went with my mom once to Denver for her appointments.

I started to feel guilty at my neglectfulness of my mom. I wasn't fulfilling my duty as a caregiver. Whenever I tried to ignore what was going on at school and talk to my mom and be supportive, I got aggravated. I pushed her away even more, making things worse for both of us. I finally talked to a dear friend of ours who is also a caregiver to her son. She told me not to push myself and to try and talk to my mom in small doses. I did what she said and felt myself slowly improve. Not as much as I would have wanted, but still, it was small progress.

"It is a definite task trying to get my life moving and still trying to be a caregiver. Balancing the two is difficult."

Karel Schulz

I am a sophomore now and my schedule has gotten even more hectic. I am looking at colleges and scholarships to get my ball rolling in the direction I desire. It is a definite task trying to get my life moving and still trying to be a caregiver. Balancing the two is difficult. Sometimes I concentrate on myself rather than asking simple questions to my mom like, "How are you today?" "Do you need help?" and so forth.

Being a bratty teenager doesn't help anything either. I'm sixteen, so of course I'm going to want to attempt to pick fights and want my way, and to also think I'm always right (sometimes I am!). The fact that I am a caregiver and struggling with the drama of high school is a fight of its own, but I continue to shuffle on.

I'm a tough chick and can handle just about anything. Any drama, and obstacle, any heartbreak, and any smack in the face. I was hit with reality early, but in the long run I'm sure it was for the better.

As a caregiver, I learned to TRY and put other people first, especially the ones that need it. Sometimes I struggle with it, a lot, but I still try. That's all I really can do for now. At this point and time in my life, it is the moments and memories that matter more than any dumb boy, any silly teacher sending you to the office, or any drama going on with friends. My memories with my mom are things I will cherish for years to come and I am so ready to step into new shoes and to buckle down and be the caregiver she deserves and the one that I have been trying to be.

I can't wait to make more memories with my mom for years to come, no matter what some silly doctor (not that I am calling you silly Dr. Bull or Dr. Risbano!) says. Whether it is for only two more years or twenty, my mom is my best friend and I love to think ahead about my future. To imagine her face when I graduate from high school, when I graduate from my college choice of the University of Kansas (ROCK CHALK JAYHAWK GO KU!), my wedding day and the day she becomes a grandma. No matter what happens, I know she will be there.

Being a caregiver has changed my life dramatically, some in a bad way, but also some in a good way. It's time I start being the caregiver I'm supposed to be. Wish me luck!!!

For comments, support, or anything like that please feel free to email me at

-Karel Schulz




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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.