Lucky

      You may be surprised to hear me say that we’ve been lucky. But we’ve been so lucky. With Jake’s KT syndrome, from birth to three, we were in the hospital every 2 to 3 months. A screaming infant, a fever, an infection. He had no words for so long and it was all a guessing game. Is he crying because he’s hurting? Does he have a fever from an infection? Blood draws, IV lines, anesthesia and a terrified baby along with scared parents. And right in the middle of all of that, Steven dies. As I write this, it's still truly hard to believe. I don’t think I’ll ever process that we survived that. That that was MY life. That is my life. I don’t think I’ve ever really taken in what happened in those first few years of Jake’s life because I so often feel like I am in survival mode. But here we are. 11 years later, and so thankful that we’ve been lucky.
     After his two week stay at the hospital when he was three, I put my foot down and demanded answers. I demanded they try this new medication that I read about online that they were doing in San Francisco for kids with KT Syndrome. I told the doctors that if they didn’t do it, I was looking to transfer him there. So they called the San Francisco doctor, and tried it. And for the last eight years, it’s worked wonders. We’ve only had a few hospital stays, little things, treatable symptoms, as KT Syndrome is treated symptomatically. He’s continued care with his hematologist here in San Diego. He gets MRIs regularly, blood draws regularly, and they keep up with his care to ensure that he staying healthy. We’ve been lucky. Then, Saturday happened. KT Syndrome reminds you that it’s around, and that it can come at you with a vengeance. Jake woke up in more pain than I'd ever seen him in. His pain tolerance is already high. So here we are. Fighting it again. Being in the hospital brings it all back. The trauma, the screaming toddler, the times you’ve held them down for blood draws because you know it was in their best interest yet they looked at you in pure terror. Sneaking out of the room to cry on hallway floors and walking back in to snuggle them to sleep. Wondering how much trauma is too much trauma. Being a parent to a kid with a chronic illness hardens you. It forces you to dive deep and find strength you never knew existed. It makes you advocate and speak up and ask questions. It’s heartbreaking and oftentimes doesn’t feel survivable, but I know that he will perk up. His light will come back into his eyes. The doctors and nurses will walk in and not recognize the boy that came in struggling, pale, in pain and sleepy. The boy who’s been tired and uncomfortable since he arrived. The boy who stumped the doctors. I know they’ll walk in to see him sitting up and talking and see the Jake we love and adore. Who can spout bird facts and tell you the deep history of Walt Disney and Charles Shultz. We will get there. Until then, we are here. Survival mode. Living the hospital life I don’t wish on a single soul. The sleepless nights, the chiming of monitors from occultation because it’s hard to keep your arm out straight so long. I’ve become so familiar with this place that it’s not scary and as comforting as that is, it shouldn’t be that way. I shouldn’t know my way around here. I shouldn’t walk in with such confidence. I shouldn’t know about shift changes at 7 and 7 and rounds at 6am. I know resident doctors are still learning and not to take what they say as fact. Once a resident dr told me she didn’t know if he’d make it. Yea. I know when to speak up and when Jakes had enough. When student doctors want to come in and he’s in zero mood, I say no. When the child life specialist wants to cheer him up and he doesn’t respond. I know when to say thank you but no thank you. You learn quick around here. You learn to love and adore your nurses because let’s be honest, they are the real hero’s and they are the parents advocate while you are your child's. You know how to silence the infusion pump when it chimes and page the nurse. You know how to ask questions and when to tell the IV tech to stop moving the needle around in his arm to find the vein because your child is literally losing it and the trauma is not worth the blood draw this second. So stop.
You speak up, you gain strength and confidence. You realize how lucky you are because when all is said and done and Jake is Jake again, we will head home and remember how hard it can be and good things are.
Perspective. We are lucky.

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