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I haven’t been able to write for a while because I haven’t really known what to say. I know writing is cathartic for me, but I’ve been sitting here for the last hour, with my laptop open and for once I do not know what to say. I only know I need to write this. I need to get everything I’m feeling out.

So how do I say this?

After three long years of searching, researching, obsessing, and longing we received the answers we were looking for. Our search for a diagnosis ended. One week ago, my daughter received not one, but three diagnoses.

• Ehlers Danlos Type 3
• Dysautonomia
• Systemic Mastocytosis

The day my daughter’s geneticist told us, was a whirlwind. I felt happy and victorious, but also relieved. So, so relieved. Even though we had answers, we left feeling the weight of the unknown.

When got home, I went right to calling as many doctors, specialists, and other providers to let them know the news. My daughter’s therapists who were in our home were looking at me concerned.

Even though we had answers, we left feeling the weight of the unknown. When got home, I went right to calling as many doctors, specialists, and other providers to let them know the news: the search for a diagnosis was over. My daughter’s therapists who were in our home were looking at me concerned.

Learn More About Ehlers-Danlos Syndrome

My daughter’s therapists who were in our home at the time were looking at me concerned. I knew I was on a high. The high of being right, of finally having answers, and from that electric feel that anxiety sometimes gives me. I also knew that with this anxiety high comes a crash. The rational part of me knew that when I crashed it was going to be bad, but until it happened I kept myself busy.

The next day I woke up feeling okay. The crash didn’t come until that afternoon. My son’s therapist was at our home, and I was explaining everything going on with my daughter and how it may affect my son, and the tears just started flowing. Once they started, I couldn’t stop. I lay there for the next several hours, with silent tears running down my face.

Since then, it’s still been quite a whirlwind of feelings, emotions, and activity. I feel happy, victorious, anxious, nauseous, depressed, unable to sleep, and unable to concentrate on any daily activities.

Click to learn more about Dysautonomia.

I was told by many, that getting a diagnosis would not be what I expected. I was told that I might not like it when we finally received a diagnosis. I was told I needed to accept that we would probably never get answers. But I couldn’t accept that. In my heart, I knew we would find them one day.

The end of our search for a diagnosis

Now I realize our journey doesn’t end here. It’s only just begun.

The implications of the three diagnoses my daughter have been given range and vary and for a control freak like me, it’s hard not to know for sure what’s going to happen. The diagnoses she has been given are pretty rare in and of themselves but put them together and it’s going to be hard to find pediatric specialists who know what they are and mean, let alone the best way to treat her for them.

And I’m feeling the weight of the expectations I’ve been assigned. The expectation is that I have to be strong. The expectation that I have is to keep going and keep fighting for my daughter. The expectation is that I have to believe “everything will be okay.” The expectation is that I have to trust God because it will magically make everything better.

You know what? That’s not how life works. Life is real and raw and nothing like anyone’s expectations. Because sometimes expectations don’t fit into a perfect, little box. Things happen, people change, and life can get messy.

I’ve realized that I can’t let others’ expectations define who I am. So here I am after years of working on healing and finding out what I believe and who I really am, I’m back to the basics.

Instead of fighting against what has always been a part of me and telling Him over and over, “God, YOU did this to me,” I’m instead asking, “God, what is your plan and what do you want me to do?”