"Chapter 1: Surviving the worst news you'll ever get."
I closed the book and set it down.
Fools.
8 years ago today, my mind started writing a handbook that would have been aptly titled, "Surviving the Worst News You'll Ever Get." 8 years ago some tech, who wouldn't recognize me if I walked right up to her, told me to wait while she got the doctor, and then that doctor, who wouldn't recognize me if I walked right up to her, brought my world down with a sentence: "The condition is incompatible with life." Anyone in the anencephaly community will tell you they can recall the date of diagnosis day just as they would recall the date of their child's birth. It's the day we start living a new life, the life of a grieving parent.
Since then, there are days that I live, but there are days I'm only surviving and throughout every day there are moments of both. Shortly after that news was delivered to me, after traveling a long road that still went by too quickly, my only son died in my arms.
So as I sat there, reading Overcoming Autism, my patience threshhold was low.
But I guess you will want to know why I was reading this book.
About a year ago, Marcos began to suspect that Delilah wasn't developing at an appropriate pace. He suspected autism. I thought he was insane. She looked me in the eye, laughed with me, played with her sister. She had hundreds of words to her vocabulary. She knew her alphabet and her numbers. I mean, she recited it all the time, along with scenes from movies and responses from Mass and it was cute the way she did the priest's part too. And when she has to get in and out of the car three times to do it 'right,' it's quirky. Okay. Maybe he was on to something.
We began the long process of diagnosis that is still ongoing today. Delilah has been provisionally diagnosed with autism, and has been receiving behavioral therapy for about 2 months. Her team of therapists and supervisors call her delightful and intelligent, and a cutie.
I know that we are fortunate. Delilah is verbal and social and affectionate and an excellent dancer, and I would still describe her as quirky. She's perfect.
January is a tough month for me, and it's capped off with Diagnosis Day, and leads right into another personally difficult month. It is also a month of odd moments of clarity. I was devastated by Gabriel's diagnosis of anencephaly, and by the news that he would not live long after birth. I also find it annoying that in light of all of Delilah's strengths and talents, she still has some delay and we need help getting her caught up. Having strangers in our home two to three nights a week is sometimes frustrating too. Yet, it's all a blessing. We have incredible access to treatment, and we have a little girl who strides more than she struggles. The 'strangers' become less and less like strangers, and more a part of our lives as we raise a child with some yet-to-be-diagnosed issues.
The pregnancy with Gabriel and the pregnancy with Delilah couldn't have been more different. But for that huge hiccup 8 years ago today, my pregnancy with Gabriel was uneventful. When Gabriel was born he was missing his frontal and both parietal bones - things, it turns out, we need to live, but he was otherise perfect. With Dee, on the other hand, we experienced arrythmia, and a "normal variant." When she was born she had torticollis, and a tiny fold in her ear that is still there today. With each of those conditions, I insisted Marcos be the one take her to the doctor for what seemed to be to be his own ridiculous, nitpicky worries. His concerns seemed silly to me and I wouldn't trouble a busy professional with them. She was living, breathing, with a complete skull, and it seemed silly to me to complain. When she was prescribed physical therapy for the torticollis and photos of her ear were reviewed by the genetic specialist to make sure the defect was merely cosmetic, I had to eat my words and consider that maybe I shouldn't go through life brushing off concerns because they weren't as obvious as an open skull.
At the same time, I don't want her to struggle. At all. With anything. I want to take every one of her burdens from her and ease them in any way that I can. I regret, now, dimissing the concerns. The idea that she doesn't have a missing chunk of skull, doesn't mean she doesn't need me. I worry constantly about how much I set her back with my skepticism, despite the fact that she has sailed through her treatment so far.
I long to have conversations with her, the way I do with Eden. When I ask her, "How as your day?" "Who did you play with?" or "Did you sleep well?" I long for her to answer. For now, I am satisfied that when I say, "I love you, Delilah," she answers "I love you too, Mommy." I do love her, so, so much.
Here's what I do know, in the crystal clear moments of D Day: If my child had to have anencephaly, I sure lucked out with one who was as strong and healthy as a baby with anencephaly could be. He lived 10 days, and that was a gift. If my child has to have autism - And she may, or may not - I feel tremendously blessed to have this particular (and, she IS particular) little girl. What I know is that the worst news of my life, twice now, has still been two of the best things to ever happen to me.
The links to some of my favorite D-Day and Dee-related posts are:
https://gabrielsmessagelives.blogspot.com/2017/01/d-is-for-diagnosis-day.html
https://gabrielsmessagelives.blogspot.com/2015/06/shades-of-blue.html
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