There is this really weird moment that happens to new moms a few weeks into the whirlwind that is life with a newborn. You look around and realize, the laundry is done, the dishwasher is unloaded, you have showered and pumped, hell, you may have even done your makeup. You've made your bed and eaten. Your baby is sleeping and you may have gotten 5 hours of sleep the night before, so you are feeling rested. Holy crap... I think I am done. I think I am going to have a moment in real life what Instagram momming looks like. I am going to sit down and hold my baby and relax, or at least try to. It always sounds like something I would want to do, but I suck at it.
This moment happened for me on July 18, 2013. Three weeks after having Luke, I was battling a little postpartum and hiding it perfectly from everyone with chores (I am a terrible actress). I remember seeing pictures of people clean and rested and happy with their baby on social media and I couldn't wait to give it a try. Oh Desiree, who will you choose? I went with The Bachelorette as my choice. Its a fun thing to watch with friends from work and make fun of each other for liking guys we consider tools (because they all aren't?). So you have to know whats coming... right? Luke starts doing something so weird with his body. He gets really tense and his arm starts flapping around. I remember my pediatrician telling us not to panic when babies made weird movements. They startle easily, ya know? But then he starts crying. Then it happens again and he cries even more. My baby didn't really cry. Something was wrong. I called the pediatrician and they sent my call right over to Kosair and they recommended we come there right away. Now, I am not going to say that I am a laid back person. Most of you are giggling right now at the thought of that character trait being associated with me. So I own it with pride, I am intense, borderline aggressive. I blame my mother, per usual. But honestly, I don't even need a scapegoat because I love it. But my point is, I am not laid back, but I am also NOT an alarmist. I did not want this to be something that's answer was "Kosiar". I preferred the answer "Flintstones vitamin" or "warm bath". So I waited for Steve to get home and we left. I sat in the back with Luke with the instructions from the nurse to "make sure he didn't stop breathing" and sang to him while texting our parents. We pulled into Kosair ER and checked in. I remember being abnormally nice to the receptionist which is a weird, yet helpful trait I have through all my experiences. For some reason I very badly want to be viewed as a 'normal person' or 'kind'. Call it fake because, my Lord, sometimes it is, but its a safer place for me to function for myself and everyone around. We went back in the room to meet the first of 8 people asking for symptoms and to see the video I took and to 'take a listen'. You have to remember that Kosair is a teaching hospital so many of the first few people you see aren't your doctor, they are updating your doctor on what the heck is going on. Save your energy for them. Luke was screaming at this point and he hadn't had another episode since we had arrived and I got the feeling they felt like I was making this up. Its a guilty feeling to want your kid to do the thing that made him scream so that they could see you weren't crazy and they could send you home with your vitamins and a pat on the head. The nurse came in with all her experience with babies to 'get him to stop crying' with this special hold they only teach you when you are an ER nurse and a grandma. This was going to do the trick... I'm sure if it was reflux it would have. But, as we found out 36 hours later, it wasn't reflux. I didn't need to stop eating wasabi peas and nursing. It was Tuberous Sclerosis. The disease that would take us from the ER, to the neuro floor, to the ICU, to the operating room, and home all in a matter of 4 weeks. Those 4 weeks of sleeping on the floor and blowing my hair dry with the hand dryer and living on coffee and cookies changed us all. I went into that hospital a little girl, scared and unsure, and I came out a warrior. So did my family. At this point we can activate our call to duty in a matter of minutes. Bags are packed, communication is in place, people jump into their roles in seconds.
I guess the main reason I want to share this story, other than to fill in holes, is to say that we aren't living a different life this week or month because this blog has begun. I didn't start writing because things are especially bad. I started writing because, for the first time, I can. We have been living in this climate for a long time. We have the outerwear. Our hair has adjusted to the humidity. We've been here. The weather may have changed a little, but it isn't dramatically worse. Some days there are storms and some days are sunny. Tornado, snow, rain, random hurricane, sun, wind... we are ready. We love that you came to visit, but to us, this is home. This is long term. Seizures may come and go, but this place of TSC is our lifelong climate for our whole family. Its weird and hard and exhausting, but we wake up everyday, check the weather, and dress accordingly.
Mother of two amazing little boys, one who just happens to be a TS warrior.