Doug and I spent today surrounded by our family. Not our blood family, but our family of circumstance, our family of situation, our family of choice -- our lifeline, our hope, our brothers and sisters, sons and daughters -- we spent today surrounded by our Fragile X family.
Over the years, there have been many gatherings with our FX family that we've been a part of. It's incredibly healing to be with others who truly understand and "get" our journey.
Today, I met a mom whose son had just been diagnosed. She was scared, sad, overwhelmed, unsure, and feeling alone. Although we had just met, I knew her well. I was her two short years ago.
Many parts of the day Trek was diagnosed are a blur. I remember bits and pieces, but there are two things I'll never forget. I will never, as long as I live, forget how I felt. There are no words to explain my physical reaction to the news. It was visceral. I was numb. I was scared. It was so powerful it sent me to the toilet vomiting. It was, for lack of a better word, awful. Utterly awful. I was hopeless.
I will also never forget Doug's words to me as we lay in bed that night. He told me that we needed to remember exactly how we were feeling because someday, another family would be diagnosed, and we could be there for them. At the time, I couldn't imagine getting out of bed and dealing with my new life let alone helping someone else.
Eventually, I did get out of bed and those days and nights of blurry sadness gave way to days of partly cloudy skies, weeks with no rain, and years of sunshine. Eventually, I did learn to live again. I genuinely smiled, laughed, and found joy.
Today, I hugged that new member of our family and I cried with her. I cried for her. I grieved for her loss and I just wanted to scoop her up and fast forward her a few years down the road and place her in a spot of acceptance and peace.
As much as I wanted to do that for her and take her pain away, that's not possible. Like another FX mama said, "You've got to feel this." She's right. As excruciatingly painful as it is, you've got to live it and figure out your way through it; it's the only way to heal and to come out stronger on the other side.
But, I could tell her it's going to be okay. No, really it is. I promise. Things do get better. You will figure this out. You will find acceptance. The pain never goes away, but it does dull, and as my friend said, you do get to a place where you can see typical children and not feel like you've been punched in the gut.
Most importantly, I hope that she left all of us today feeling like she's no longer alone. I hope that she left knowing that she's part of a bigger family than she could have ever realized. I hope that she knows that she's loved. Each of us know her well, in an essence, we are her.
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