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Diagnosed with Complex Trauma and a Dissociative Disorder, Emma and her system share what they learn along the way about complex trauma, dissociation (CPTSD, OSDD, DID, Dissociative Identity Disorder (Multiple Personality), etc.), and mental health. Educational, supportive, inclusive, and inspiring, System Speak documents her healing journey through the best and worst of life in recovery through insights, conversations, and collaborations.
Welcome to the System Speak podcast, a podcast about dissociative identity disorder. If you are new to the podcast, we recommend starting at the beginning episodes and listen in order to hear our story and what we have learned through this endeavor. Current episodes may be more applicable to longtime listeners and are likely to contain more advanced topics, emotional or other triggering content, and or reference earlier episodes that provide more context to what we are currently learning and experiencing. As always, please care for yourself during and after listening
Speaker 2:to the podcast. Thank you. I have just driven to the park near my home and parked the van where I used to sometimes park after therapy and go for a walk and then surprise my daughter when she got off her school bus so that she didn't have to walk the rest of the way home. It's early in the morning, and the sun is still rising. So the voices of the school bus are not yet here.
Speaker 2:And the presence of my daughter is like a ghost far away in Oklahoma, but almost as if she's still here. How strange it is to have a now time child showing up in what is already memory time. And now this morning, I took my youngest daughter to the airport with two giant bags packed full of all her things, a car seat because she's still too small and doesn't weigh enough to get out of her car seat yet even though she's just had her ninth birthday. Nine years old. Ten years of me knowing she was coming.
Speaker 2:Ten years of watching her survive. Ten years of waiting to tell her goodbye. Practicing it, almost being braced for it over and over again, A constant in the background, like a refrigerator or air conditioner. Sounds that hearing people don't notice because they're always there. That's what it's like raising a child who could die, but she hasn't.
Speaker 2:And so this morning, we logged her big suitcases and her car seat and her oxygen and her backpack full of snacks and crayons. Because nine years old means you still like to play Barbies and color, but you also like earrings and new leggings and sparkly shoes. It is a strange thing watching this little princess, so girly in a way I don't understand, watching her grow up and become herself, taking up all the space in the room without any shame. It's a beautiful thing. Sometimes an exhausting thing, not because she's doing it wrong, but because she captures your attention and sucks you into her giant eyes.
Speaker 2:That's how she got the earrings, actually. But she's still here. And I can't believe she's nine, that she's still alive, that she's doing so well that she can ride a bike, ride a scooter, cross the jungle gym bars, and run through the fields doing cartwheels and handstands. She is happy, Loves to sit at the piano and make noise and write songs and sing them with that airway that's impossible. Her pediatrician says singing is breathing, and we just watch her go.
Speaker 2:But yesterday, she wrote on her math paper a list of her traumas, including the medical traumas and the loss of her twin sister, who we couldn't save and have already grieved, continue to grieve, will forever grieve. I remember how tiny she was, that one. Holding her in my hands, both of them in my hands. Literally, my hands. They were so tiny.
Speaker 2:I don't know what miracle it was that I was the chaplain on duty when they came in from the jail, that I was there in the ER when they arrived, that I had access to that security with the police officer to help their mother see them after they were born before she was taken away again. I don't know why out of all the children, they were the ones I got to hold on the day that they were born and the day Lucy died. I watched them take away Kyrie. I did not run behind them, up the elevator to the helicopter pad like I have before to watch babies fly away, sending a prayer on the wind because it's all I had to give, presents and a witness when no one else was there. I didn't know it would be more than thirty days before I saw her again while the hospital waited on the paperwork from the court, or that she would have so many surgeries all alone on her own without anyone to hold her.
Speaker 2:I stayed behind to hold her sister and say goodbye and keep her warm and safe until they took her away. It seems like yesterday, as if today is any other sunrise, But always with these girls, it has been about saying goodbye. But today, my daughter wasn't on a life flight or a helicopter, just an airplane. With all the other people who don't know who we are or who she is or how much she means to me. Strangers giving me strange looks about why I would be saying goodbye to my daughter at the gate and send her to fly alone, not knowing that she's done it her whole life.
Speaker 2:While I don't know how much is adventure and how much is more trauma or deprivation, except she asked to go. She's ready for Oklahoma for the summer. She misses her sister who left already, and she misses her friends back at school in Oklahoma. So when she was ready and when she asked, I got her ticket and took her this morning to the airport with a backpack loaded full of crayons and a peanut butter sandwich and an orange. She also picked Funyuns and Takis and Cheez Its and some ring pops.
Speaker 2:Candy I never had as a child. Candy, I don't want now, but candy that delights her beyond description and is her favorite. So she was set, excited also for snacks on the plane and soda, and the kids' room where they take her between flights, where she gets to watch movies and play and eat all kinds of snacks. The kids love flying back and forth between me and Nathan and back again because they're spoiled along the way, and it's a grand adventure, an expensive one. So she will be there until the end of summer or stay if she wants to for school.
Speaker 2:Her flight was early. We had to get up at four. She ate a yogurt in the car on the way, and I had flashbacks of her not that long ago eating through her g tube with a bag hanging from the hook on the roof of the van. But she got down some yogurt. And when we got her checked in and her bags and and machine and car seat checked in and got her and her backpack through security, There was time enough to also get her a bagel and some milk.
Speaker 2:She ate that and some strawberries that she snagged from the fridge that I had bought for a salad. She chatted with me as if it were any other day, and I kept my feelings in check so that she could stay excited and not scared. It's her first time without any siblings being with her even though she's done the flight lots of times and knows what's coming. I didn't even cry when it was time for her to go. They put them on the planes even before the people who need help with wheelchairs to get her settled before the chaos of boarding.
Speaker 2:And then I'm not allowed to leave until the plane is in the air, not just backed up from the gate, but until the plane is in the air. Then I'm free to go. Even then, I did not cry. Because with her, I'm good at saying goodbye. We've had so many goodbyes, so many times to say goodbye.
Speaker 2:And it's time again for airway reconstruction because she's outgrown her new airway that she got during the pandemic, which is good. That means it's working. That means she's breathing. That means she's sleeping. That means she's growing.
Speaker 2:And so it's time again. And she got medically excused from the last bit of school. To go back for surgery, to go to preop, to go see the pediatrician who has not retired yet because she wants to make sure that my daughter makes it to adolescence. When her airway will stabilize at whatever level it's going to be because she will be as big as she's going to be, which right now is smaller than the first graders, maybe about the size of some first graders. But the kids in her class, she doesn't even reach their shoulders, And she's starting to be old enough to really be aware of that.
Speaker 2:But the pediatrician will see her and ask her if she consents to the surgery because she's on palliative care and doesn't have to do any intervention. She doesn't want to. And a month ago, she was saying no. She didn't want any more surgeries. But then the new Taylor Swift album is coming out on Friday, and I know plural Swifties are excited about that.
Speaker 2:But for my daughter, new music means new air, and she's starting to have trouble singing because she doesn't have enough air. So when she heard there was a new album coming out, she said she would do it, that she wanted to do it. The last time she did it, it bought us three years we didn't know we would have. And any surgery for her is risky, and we never know if she will make it. But she said to me, singing is worth it, mom.
Speaker 2:I wanna do it because I wanna sing. Singing is everything, she said. Breathing is everything. So this morning, I hugged her goodbye at the airport, not going with her for the first time for surgery because it has to be done there where they know how to do her airway and the Heliox for extubation, which for her is the hardest part of surgery. Because your airway swells when they extubate you, and hers is too small to reintubate if something goes wrong.
Speaker 2:So when it's time for surgery, like the actual day, I can go if I need. But for the visit to the pediatrician and preop, she gets to go visit the grandparents and her other siblings and see Nathan. And so today, for her, just felt like any other day. And I kept a smile on my face, being attuned to her feelings while pausing mine. Not dissociating them, just pausing them.
Speaker 2:And then maybe a little dissociated once I was leaving the airport, trying to transition back into my day. And I was okay until I drove past her little neighborhood school. And that's when I started crying, when I saw her school. And nothing is wrong. She's okay today.
Speaker 2:And her airway is so much better than it's ever been before, so even this surgery should be easier, theoretically. And, also, she's my last little one, and she's not little anymore. She is full on teenager, even buying eyeliner at the garage sale last weekend. It was a pale brown, matching her Pakistani in tone, and she was proud. Proud to be herself.
Speaker 2:Proud to be Middle Eastern. Proud to have found a color that matches her. And I tried to not be shiny happy. And I tried to remind myself that it was a light enough color, that it was okay for play, and encourage her, and let her buy the thing with her own money. Even though I myself don't spend money on makeup, I don't wear any at all.
Speaker 2:I don't know where she gets it, But Jules wears makeup, and that's been helpful. She has someone to look to when I'm not all the things. Maybe that's why we all need each other, Because all of us together are enough, and all of us together are different. And all of us together give each other enough air to breathe. Thank you for listening.
Speaker 2:Your support of the podcast, the workbooks, and the community means so much to us as we try to create something together that's never been done before, not like this. Connection brings healing, and you can join us on the community at www.systemspeak.com. We'll see you there.