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My Struggle to Let My Recently Diagnosed Daughter Learn Resilience

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I am learning the discipline of carrying on, the stiff upper lip, the one-foot-in-front-of-the-other method of facing the day. I am watching my daughter Sophie and, unlike me, she either has an innate positive attitude or she skillfully disguises any fear of the future.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It occurs to me that writing about how I am struggling with Sophie’s diagnosis may appear completely self-centered on my part. She is the one feeling the pain, constant illness and interrupted life. Still, I respect and love her enough to let her come to her own words. I will not usurp her privilege to express herself by trying to write about her experience through the eyes of her mother. She is bright, thoughtful and intelligent and I know she is developing her own philosophy of survival that she will share when she is ready. In the meantime, I must write about my experience as a mother and get this fear and worry out of my body — and I’ve always done that by writing. So, please forgive me if this seems selfish. In the end, it keeps me moving forward to help Soph.

So, we have seen the geneticist and are waiting for some results that will tell us if she has vascular Ehlers-Danlos syndrome. None of us think she does, but she needs the testing done just to make sure. The doctor is running four different genetic tests in three different labs and the first results will be back in the next two weeks.

The next doctors we need to see are the neurologist and an endocrinologist. I can’t believe how many systems in the human body EDS affects. Sophie is experiencing new symptoms — tremors and joint pains (so far she has complained of legs, ankles and back). She doesn’t ask for painkillers very often, so when she does I know it hurts. She continues to have gut pain and nausea daily so that leads me to…the visit to the gastroenterologist.

This visit was devastating to me. I could barely contain my despair and tears in front of him, Sophie and Guy, my husband. I have spent the last two weeks going over his conversation with us in my mind — over and over and over. I haven’t spoken to anyone about how I feel after hearing his opinion — not Guy, not Sophie. Besides the geneticist, he is the only physician we’ve seen so far who has experience with teens with EDS and he practiced for years with one of the three experts in the U.S. at Cincinnati Children’s Hospital. (Her cardiologist works with kids who have POTS and our GP is learning with us.) The news was not hopeful. He was straightforward and Sophie was immediately angry with him. I understand her anger and yet I am so grateful for his honesty.

There was a truckload of information he was trying to pass on to us, but two things shot out of his mouth like a 3-D arrow right into my heart.

1. He said, “If there is one word I can use to sum up EDS, it is pain. Pain, pain and more pain. And there is no treatment that fully manages it. And it does not get better; it gets worse.”

2. He turned to Sophie and told her she needed to learn how to cope, because Guy and I will not be there to take care of her later in life when it becomes very, very hard. He was tough and unrelenting for what seemed like hours (it wasn’t, but time slowed down for me). He emphasized to Sophie that she must get up, get out, face the pain, do things even when she knows she can’t. She must learn to cope, cope and cope. She was furious. It is the first real emotion I’ve seen in her since her diagnosis.

In the end, he hugged her and told her that the next time he wouldn’t be so rough, but she needed to know what she is facing. No other doctor was so honest with us. They have all been supportive and caring. So was he. But in a drastically different way.

So, I’m left thinking about my beautiful daughter with a lifetime fight ahead of her. I am watching the pain begin and, as a mother, I wish with my heart and soul it was me. I am struggling with the fact that I won’t always be here to take care of her. And maybe that’s not right either. She must go out on her own long before I leave this earth (I hope) and I am learning how much that scares me. I want her wrapped in my arms, but that is not the best thing for her.

I know she needs to learn resilience. I know that. But how do I let my heart in on that wisdom?

Thinkstock photo via monkeybusinessimages.

Originally published: May 17, 2017
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