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When the Search for a Diagnosis Ends

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I haven’t been able to write for awhile 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 that 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. One week ago, my daughter received not one, but three diagnoses.

The day my daughter’s geneticist told us, was a whirlwind. I felt happy and victorious, but also relieved. So, so relieved. Even thought 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.

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 laid there for the next several hours, with silent tears running down my face.

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

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.

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 has 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 that I have to be strong. The expectation that I have to keep going, keep fighting for my daughter. The expectation that I have to believe “everything will be okay.” The expectation 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 other’s 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?”

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4 Comments

  1. Hi Kathryn, My thoughts and prayers are with you. It is all complicated but I liked how you ended your article with the question, “God, what is your plan and what do you want me to do?”. God Bless

  2. I came across this blog from another one. My daughter has a rare genetic disorder Phelan-McDermid Syndrome. There are only 1,400 known cases in the world. We learned of her diagnosis four years ago come this July. We had been searching for answers for her delays from birth until her third birthday. It has been a whirlwind with dealing with Tricare, being stationed in Montana, always traveling for specialists then limited services in that area. Then moving in three weeks after my husband filed for an EFMP reassignment, from Montana to Florida. It is never ending. I know our children don’t have the same disorders (though my daughter is soon getting tested for EDS. Did you participate in Rare Disease Day?) but we certainly seem to be on similar paths with our children. I wish you the best during the beginning part of your journey with having these diagnoses. You are not alone, even though you will feel like you are. Please feel free to reach out if you want! I have a few friends across the world who I don’t know what I would do without their understanding support. Sometimes family and friends just don’t “get it,” or the mood swings, or the constant worrying especially with a disorder that isn’t commonly known. It takes a toll on a person, mother, marriage and not even counting military lifestyle. You will keep pushing, advocating and loving your child just as you always have done. I wish you and your family well during this time!

    1. Hi Sara,
      Thank you so much for taking the time to comment and share your story and encouragement. I really appreciate it! It seems as though you totally get it and it’s so nice that you do. I agree, most people will never fully understand what is on our plates. I wish you and your daughter the best of luck, I hope you continue to find the answers you need. <3

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