Love Hate

I have a love hate relationship with this place.

I love that Children's Hospital exists and that my son has, over the past 5+ years, been the recipient of quality healthcare.

I hate that Children's Hospital exists and that my son is a regular patient there. Currently, he's on the twice-annual-check-up list. It used to be much more frequent, when he was first diagnosed.

Today was a check-up that should've been done in January. But, ya know, life happens for other people and the doc needed to reschedule it for whatever reason...so by the time we could coordinate calendars and all of the goddamn phone tag, we're into March. Jesusgodbless the health care system.

Anyway...

Today was hard.

Because for my family, since we're at a heightened sense of awareness that any "check-up" could result in "you're fucking life is at risk, again" there ain't no such thing as a "check-up" in the Anderson Abode.

On Monday and Tuesday I had to push them on getting the doc to put the orders in for my son's blood drawn, knowing the results wouldn't be in before the appointment, but because we were there and goddamnit when we got it drawn at home last time there was a mix up and we're already in the city and can't we just do this, please? Why hasn't he put the goddamn order in yet? I've been calling for two weeks. FUUUUUUUUCCCCCCCCCCKKKKKKKKKK.

Fuck it. His appointment isn't until 10:30, and we check in at 10:15, so if I don't give him his morning anti-seizure pharmaceutical but a double dose of Charlotte's Web his seizures could be kept to a minimum until after the blood draw. And he eats the purple box of the Annie's mac&cheese that I made yesterday, that I can heat up in the microwave at the new to us hotel (which really was exciting and super stressful because autism) they can still draw his blood after the clinic appointment, we should be outta there by 11:30 if things go smoothly.

Ok so you want to know how much of the pharmaceutical is in his blood and I want to know what the fuck is going on with his liver and his kidneys because you've got him on the level six and seven drugs to stop his motherfuckin seizures and if these goddamned drugs stop working, or his organs get fucked up because of these drugs, godforbid, then what the fuck do we do?

Yup. I'll call you on Wednesday next week and get the results of the blood draw. Thank you, doctor, for making any medication adjustments via a quick phone call with me. I know you're a very busy person and that you get to help a lot of children. And families. Thank you for helping me remember that his behavior and his uncontrollable laughter, especially when i am stressed, is not my fault. That his development is so delayed it leaves him vulnerable. I know. Goddammit I wish it wasn't true but it is. People with intellectual/developmental disabilities are seven times more likely than a neurotypical person to be victim of sexual assault. And, as a mom of boys, an erection does not equal consent.

Yes. There are lots of things he can do. He can shoot a basket. Nathan tell the doctor about what happened at the Special Olympics! And he is going to participate in soccer academy at the college; this will be his third year. And, yes, he's continuing to study martial arts; it helps all of us on many levels that both he and his brother participate in these activities.

My husband and I are both doing well. Thank you for asking. Neither of us have any evidence of disease. Yes. Thank you. We'll see you in 6-7 months. 11:23 am. Less than an hour. He's gettin' good. It's only taken me 5 years to train this doc. It's ok...he's a good egg and I'm thankful he's on my son's health care team.

Out. Down the hall. Up from the fifth floor--thank the Sweet Baby Jesus the quake didn't happen when we were down on five. Fuck. We'd have been buried alive. Elevator up to seven. Dammit the lab is on eight. Of course it is. With the pediatric cancer patients. Goddamnit. I have a love hate relationship with this place. Fuck. Why the fuck doesn't the government throw more money at those kids? Pro-life my ass. Fuckers. Pro-goddamn-oppress-women-fucking-fucks.

Hi. Yes, for a blood draw. Great. Thanks. Nathan, here's the iPad. Sit. Wait. Tick. Tock. Goddamn. That poor kid. Oy. And oh, sweet itty bitty brand new baby in a stroller with an oxygen tube in her nose and momma carrying the pump and oh i can't and thank you for just seizure disorder and autism because wow i can't even right now because I have a love hate relationship with this place. Fuck...how do they get through the day? And the nights? It's always worse at night.

Phone. Help an old friend who is very dear to you and has a young son who is melting.... You need to look for patterns. And if his sister wants to help, before the next meltdown, can she maybe think of two ways or two things she can do to help him when he's melting? What type of things help her when she's frustrated? Could those same things help her brother? Write down what doesn't work. Shit will leave your brain faster than you anticipate.

Nathan.

Down the busy hall into the small room goddamnit not a student ok...phew! Honey I need the iPad and then yes you can come right back to it. Thank you. You are so brave and strong! I know but look at me. You've done this a lot. You're at the boss level with this. Why isn't his vein in his arm up? Oh...of course...because he's been on the iPad since we rolled in the hospital 2 hours ago. Yup. That vein in his wrist looks good to me. But it's his body and he gets the final say. Nathan you are the bravest kid I know. Breathe. It's ok to cry honey. I know it hurts and I'm so sorry. Look at me. Look in my eyes. I'm right here, sweetie. You're doing great.... Yeah...it's taking a while. There you go! OH! And she's making a green bandaid with the tape! That is so cool! How did she know green is your favorite color? Yup! She is brilliant! And she did a great job!

At least we didn't have to do your foot again. Yup. You were little and not cooperating with giving me the iPad so I made the decision for them to go into your foot. You did not cry on that one. When the nurses stick a needle in me, I don't look. The anticipation is too much and creates stress and I prefer to look away and take belly breaths. I love you very much and am very proud of you. I know you're hungry. Here. Show the phlebotomists how you take three big pills at once. Yeah! You rock! High five!

Out. Down the elevator to seven. He's too slow on the stairs and we need to move quickly. He's starving. My window is closing rapidly. The cafeteria has nothing that I'm willing to spend money on. I have a love hate relationship with this place.

Hey, let's go to the car and eat the homemade chicken nuggets we brought and some bell peppers and carrots and after we eat then we can stop at QFC and get some Jojos. And a goddam coffee for me. And chocolate for Daddy and Isaac. And me and you, too.

Let's go home.