"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
Thursday, January 31, 2019
Monday, January 14, 2019
Lacks Foundation
"Your Honor, would you like me to lay foundation?" Tyler asked.
"Yes," responded the judge."
His back was to me as I sat behind my student during the second round of mock trial competition, but I know him well enough by now to know the look on his face in that moment. He slowly, thoughtfully launched into a series of three questions, then said, "Your Honor, motion to move Exhibit C into evidence." This time, unopposed, his motion was granted, and my heart swelled with pride. I scoured the audience to see if Tyler had a parent present to share in the joy, but found none.
When I was asked to be the attorney coach at West High in January 2013, I was told that as a Hispanic woman I would be relateable to my students, most of whom are young Latina girls. They would see themselves in me, and believe in themselves. I am hard on my students. I criticize their accents, their grammar, their presentation, their articulation, their appearance, all when it's appropriate. I dress for them - I take care when I know I will see them to look presentable. More than presentable. I try to look nice. I want them to know that someday they can walk in my shoes, and that one of the benefits of the hard work is that the shoes are pretty. I challenge them, because they are better than they often realize, but not as good as they sometimes think. The practice of law has a way of reminding you almost every day that while you might know a lot more than the average person, there's always something more to learn, and that's why it's always just 'practice.'
But when I look around to find that most of my students do not have a parent there on competition night to support them, I realize that I might look like these kids, but their experience is far different from my own. Many of my students, don't have a parent who works 'normal' hours and is able to come to their extracurricular events. Many of my students have parents who don't understand English. A surprising number of my students have parents who simply don't support their academic endeavors, either because they don't understand them or because they don't think those skills will ever pay off for them. My role becomes more than 'coach;' I am their cheerleader, their believer, the person who sees them in a real trial someday, as a real lawyer.
Still shell-shocked from the death of my son and subsequent divorce, the students of West High gave me a reason to live again when they invited me into their lives. They probably didn't think I would be as mean as I am - But I hope someday they'll forgive me.
I place great hope in Mayra, a sophomore when I first met her in January 2013, but now ready to graduate with her Bachelor's degree. I've never doubted that she will go on to do great things and I follow her progress so I can enjoy her success. Watching her grow reminds me that this is worthwhile. Valuable time with my young children is sacrificed so that I can continue to coach and I tell myself that my children have an edge with two parents with advanced education, that many of my students do not have. There is a machine supporting these students that they do not see, consisting of my children, my husband, my parents who help with Eden and Delilah when my husband and I aren't available, and my employers who support me and work with me in these volunteer efforts. Our teacher coach, Carrie, and my co-attorney coach Sarah are making the same kind of sacrifice, with spouses and family and obligations that are deferred so we can help these kids succeed. They are going to improve their lives and their families' lives, and we get to be a part of it.
I realize now that I took for granted the support of my parents and teachers and coaches along the way. The oldest of four, I always felt that I didn't get the kind of attention and support that I wanted, especially when my baby sister came along during my junior year of high school. Now I see that my parents moved mountains to make all of us feel equally loved, supported, and encouraged. I see the challenge that went into raising four very different people with very different interests which pulled their time and attention into four very different directions. I recognize, now, that they are still the people who believe in us the most and who hope the most for our success.
The phrase "It takes a village" is no cliche. I recently expressed my interest in taking West High to the state mock trial competition, and was met with the kind of look which suggests that I might be the only person who believes we can go to state. Every May, four months after the mock trial competition season has ended for us, as I sit discreetly in the auditorium to watch my students receive their senior awards before they move on with their lives while I plan for another year that hopefully ends at state, I wonder if it's true that I am the only one with this hope and dream. Then common sense prevails. Every year, there is at least one senior student who is hoping this, their last chance, will be the year. Every year I know my fellow coaches, as tired as we are, want the same. I know my family believes in us too.
In the bleakness of January, a month that has been so very hard on me for so many years, these dreams are my ray of light. To the outsider, the dream may seem hopeless, may seem to lack foundation. But with a little bit of inquiry the outsider will see that we are still on track to make our dreams come true.
"Yes," responded the judge."
His back was to me as I sat behind my student during the second round of mock trial competition, but I know him well enough by now to know the look on his face in that moment. He slowly, thoughtfully launched into a series of three questions, then said, "Your Honor, motion to move Exhibit C into evidence." This time, unopposed, his motion was granted, and my heart swelled with pride. I scoured the audience to see if Tyler had a parent present to share in the joy, but found none.
When I was asked to be the attorney coach at West High in January 2013, I was told that as a Hispanic woman I would be relateable to my students, most of whom are young Latina girls. They would see themselves in me, and believe in themselves. I am hard on my students. I criticize their accents, their grammar, their presentation, their articulation, their appearance, all when it's appropriate. I dress for them - I take care when I know I will see them to look presentable. More than presentable. I try to look nice. I want them to know that someday they can walk in my shoes, and that one of the benefits of the hard work is that the shoes are pretty. I challenge them, because they are better than they often realize, but not as good as they sometimes think. The practice of law has a way of reminding you almost every day that while you might know a lot more than the average person, there's always something more to learn, and that's why it's always just 'practice.'
But when I look around to find that most of my students do not have a parent there on competition night to support them, I realize that I might look like these kids, but their experience is far different from my own. Many of my students, don't have a parent who works 'normal' hours and is able to come to their extracurricular events. Many of my students have parents who don't understand English. A surprising number of my students have parents who simply don't support their academic endeavors, either because they don't understand them or because they don't think those skills will ever pay off for them. My role becomes more than 'coach;' I am their cheerleader, their believer, the person who sees them in a real trial someday, as a real lawyer.
Still shell-shocked from the death of my son and subsequent divorce, the students of West High gave me a reason to live again when they invited me into their lives. They probably didn't think I would be as mean as I am - But I hope someday they'll forgive me.
I place great hope in Mayra, a sophomore when I first met her in January 2013, but now ready to graduate with her Bachelor's degree. I've never doubted that she will go on to do great things and I follow her progress so I can enjoy her success. Watching her grow reminds me that this is worthwhile. Valuable time with my young children is sacrificed so that I can continue to coach and I tell myself that my children have an edge with two parents with advanced education, that many of my students do not have. There is a machine supporting these students that they do not see, consisting of my children, my husband, my parents who help with Eden and Delilah when my husband and I aren't available, and my employers who support me and work with me in these volunteer efforts. Our teacher coach, Carrie, and my co-attorney coach Sarah are making the same kind of sacrifice, with spouses and family and obligations that are deferred so we can help these kids succeed. They are going to improve their lives and their families' lives, and we get to be a part of it.
I realize now that I took for granted the support of my parents and teachers and coaches along the way. The oldest of four, I always felt that I didn't get the kind of attention and support that I wanted, especially when my baby sister came along during my junior year of high school. Now I see that my parents moved mountains to make all of us feel equally loved, supported, and encouraged. I see the challenge that went into raising four very different people with very different interests which pulled their time and attention into four very different directions. I recognize, now, that they are still the people who believe in us the most and who hope the most for our success.
The phrase "It takes a village" is no cliche. I recently expressed my interest in taking West High to the state mock trial competition, and was met with the kind of look which suggests that I might be the only person who believes we can go to state. Every May, four months after the mock trial competition season has ended for us, as I sit discreetly in the auditorium to watch my students receive their senior awards before they move on with their lives while I plan for another year that hopefully ends at state, I wonder if it's true that I am the only one with this hope and dream. Then common sense prevails. Every year, there is at least one senior student who is hoping this, their last chance, will be the year. Every year I know my fellow coaches, as tired as we are, want the same. I know my family believes in us too.
In the bleakness of January, a month that has been so very hard on me for so many years, these dreams are my ray of light. To the outsider, the dream may seem hopeless, may seem to lack foundation. But with a little bit of inquiry the outsider will see that we are still on track to make our dreams come true.
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