So you have a diagnosis…. Then what?

The first thing I thought was “great now I know what is wrong with her and we can fix this”. Everyone wants to tell you that now you have a diagnosis- its great, but then they go on about their lives and what do you do?

I panicked. OH MY GOSH…. I have a kid with a medical condition…..

Yes I have a “diagnosis” but now what? What is going to happen? What am I going to do? How will this affect our lives?

Jasmine had to get an IV in each hand. 

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 and 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.”

Jasmine in her hospital bed playing with toys

I must have tried to explain this to every one of my relatives and yet each time I felt as lost as they were. 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 that 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 to hear that they are 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 am still learning. It has taken months for me to even tell people what has happened to our family. People think that the world is a better place once you receive a diagnosis, like as if the clouds open up and the sun shines through, but in this world a diagnosis is the beginning of a long journey. It is a life long road of working to stay healthy. In Jasmine's case her condition is now her life, she will not "grow out" of it, she will never "recover" from it (unless she needs and receives a transplant) she will carry this with her all the days of her life.