After I received my daughter Jasmine’s diagnosis of urea cycle disorder (UCD), the first thing I thought was, “Great, now I know what’s wrong with her and we can fix this.” But I also panicked: “Oh my gosh… I have a kid with a medical condition.”
People might tell you it’s great to have a diagnosis, but then they go on with their lives and what do you do? Yes, I have a “diagnosis,” but now what? What’s going to happen? What am I going to do? How will this affect our lives?
How do I tell my family and friends? How do I explain her condition?
The doctors explained it over and over and we thought we understood what was happening. We thought we understood her condition. What I didn’t realize was that I wasn’t ready to answer questions.
I called my mom and tried to explain. I tried my best to make it simple and help her understand. “She can’t process protein. There’s a process that your body goes through called the urea cycle. At the top of her cycle, her cycle stops working. Ammonia builds up in her system and she can’t flush it out.”
I must have tried to explain this to every one of my relatives, and yet each time I felt as lost as they were. The truth is, I wanted to crawl in a corner and stare off into space. I didn’t know what to tell anyone anymore, so I stopped talking to anyone I didn’t have to. I went into survival mode and shut the world out. It felt like none of my friends and family could possibly understand how I was feeling.
We brought Jasmine home from the hospital after just 24 hours in complete shock.
The doctor suggested we find groups for her condition. We found the National Urea Cycle Disorder Foundation, the NUCDF Facebook page and my favorite so far, the Urea Cycle Disorders Worldwide Facebook page. Reading about others who have what Jasmine has and hearing they’re alive and healthy and living with their condition was so helpful. The community for urea cycle disorders has been a life-saver.
After receiving Jasmine’s diagnosis, it has taken months for me to fully understand her condition, and I’m still learning. It has taken months for me to tell people what’s happened to our family.
People might think the world is a better place once you receive a diagnosis, like the clouds open up and the sun shines through. But in our world, a diagnosis is the beginning of a long journey. It’s a lifelong road of working to stay healthy.
Jasmine’s condition is now a big part of her life. She won’t “grow out” of it or she “recover” from it (unless she needs and receives a transplant). She will carry this with her all the days of her life.
To any other parents out there who just received a diagnosis for their children and aren’t sure what to do next, this is what I suggest: Surround yourself with good, supportive family and friends and soldier on. Find groups of people who truly understand your child’s diagnosis and lean on them for support. Understand as much as you can about your child’s condition so you can be the best caregiver and know you’re doing everything you can. Focus on one day at a time, and each evening, you’ll know you’ve accomplished something. It may be small but it’s something.
We hear all the time, “I don’t know how you do it.” We do it because we have to. There’s no choice when your child needs you; you figure it out.