OUCH. The Truth Hurts, but it Will Set You Free
FACT: Onychotillomania is a unique and “common” feature of Smith-Magenis Syndrome that means the compulsion to pull out one’s own fingernails or toenails.
FACT: My daughter, Sienna, pulled out one of her fingernails the other day. The whole nail. Right off. She told me in a very matter-of-fact way when she got off the bus. I will spare you the photo. It looks awful and angry and I am just trying to keep it from getting infected. She’s in pain, but she won’t put a band aid on it because she hates band aids. I suffer with her. It infuriates me that there is something in her that compels her to do something so horrific and that this compulsion is stronger than her will or self-control or my love or parenting skills. This was the last of a long list of features that we had yet to check off. I was really hoping we would never have to.
FACT: Sienna has Smith-Magenis Syndrome.
She doesn’t just sort of have it. She has all of it. You cannot sort of have Smith-Magenis Syndrome just like you cannot sort of have pancreatic cancer. She will never beat it or outgrow it or overcome it. This is not a harsh or judgmental statement. It is the truth. Saying this out loud does not make me hopeless, it makes me honest. It means that I am not in denial of our current reality which makes me more available to offer creative ways to help her. When people try to minimize SMS or downplay its impact on our lives, that does not make me feel better. It makes me feel crazy. I am not crazy, this Syndrome is. Understanding the scope and essence of her diagnosis reassures me that I am not in control. This fact used to terrify me, but now it actually brings me some relief. I am not to blame. Neither is she. No one is. I cannot “fix” her. What I can do is create an environment for her that supports her and fill it with people who “get” her. I can help alleviate some of the symptoms with medication and behavior strategies. But, I cannot control the ways in which SMS affects her. I do not have that kind of power.
My daughter has Smith-Magenis Syndrome in its entirety and that does not change the way that I love her or will work to help her achieve her potential. I can simultaneously love and adore her AND hate what SMS does to her and to our family. The two are not mutually exclusive. This is one of the many paradoxes of special needs parenting. While SMS does not define her, it most certainly dictates how she sees and interacts with the world and how the world sees and interacts with her. Sienna is an adorable, funny, and loving child who happens to be in a very serious, relentless battle with her genetics. That’s a fact. Wholly acknowledging that fact enables me to move towards solutions that might improve her quality of life. Coming to terms with her disorder validates our current experience. It does not reduce her worthiness of love, community, or affection. I also strongly believe that, in spite of her diagnosis, she will enjoy a fulfilling and productive life. Those of us who take care of someone with SMS do not need to sugarcoat it for our sakes. We only do that to protect outsiders and, in many cases, to preserve the dignity of the person with SMS. In actuality, that doesn’t really help anyone. What helps is being able to speak the truth so that we can take an honest look at how we can improve the situation. There are some things that cannot be changed. I cannot prevent my daughter from pulling out a fingernail. That is a fact. But, I can keep it clean, nurse her finger back to health, and avoid getting angry with her for doing it.
It hurts to admit that my daughter intentionally pulled out her fingernail. It hurts more to realize that she is a textbook case of Smith-Magenis Syndrome. There is a part of me that is conditioned to believe that admitting this fact is an admission of defeat. However, my deepest truth is that it hurts most to have to pretend she isn’t. Talking about it openly normalizes our lives so much more then acting like everything is perfectly okay when it’s not.
For new parents who read this and feel terrified, I want you to know that there will come a time when the fear of these things no longer paralyzes you. While it may be uncomfortable and often hurtful, ultimately the truth will set you free.