The cocktail. Our cocktail.

I have something I need you to do.

CALL THIS NUMBER. 1-866-827-8203. Ask to speak to Tex Sarah Jackson. I think that is her name.

YELL AT THEM. YELL AT THEM FOREVER. VENT. GET ANYTHING OUT THAT YOU WANT TO GET OUT.

Tell them about Jacob. Tell them about you. About your laundry machine being broken or the camp bus that is always late. Tell them about how hard life is and how they are supposed to bring comfort. Tell them THIS story. TELL THEM THEY SHOULD DO THEIR JOBS. Their jobs matter.

This is just ONE of FIVE fires yesterday. Too tired to recount them all, but like every story in my life, they are a cocktail, laced.

They are laced with beauty. They are laced with poison. All at the same time. It’s hard to fathom that altitude and depth can exist on one plane. That hot and cold can exist on one palate. And that happy and sad can exist in a single emotion. But this is how every day has been and I’m not making this shit up.

Jacob needs to receive antibiotics every day now as he has an infection. This is “expected.” He got it when he had zero immunity. 

He needs them within a certain time each day. The hospital sends you a home care provider to come to your home and administer the drug the first time through the port. After that, you learn how to do it yourself. Another responsibility among the 7 other responsibilities of Jacob’s timed medications that already exists.

We had a window of 3-5pm. They called and said it may be later but definitely before 6. We call the hospital, they say 6:00 is okay. Alrighty then. We have nowhere to go anyways.

Steve, being Steve, actually questions the company as they say the representative is coming from New Jersey.  Can she get here on time? He is always looking for danger. They ASSURE us this is NOT a problem. 

6:00 rolls around. 

6:30 rolls around.

We have called the nurse twice now. She is in traffic. She doesn’t know the area. She doesn’t even usually work this late, but she is “close.”

We call the hospital. “As long as she is there soon.”

We call the nurse AGAIN. Now we are angry. Now we are concerned. She says “five minutes.”

The hospital says that is faster than it would be for you to get here. Stay put. 

And then it’s now 7:25 and she is not here and we are out of options. We are too far from the hospital. Do we go to the ER?! The ER?! The pinnacle of germs. Bringing Jacob there would be dangerous.

WHAT THE FUCK DO WE DO?!

And then she came. At 7:38.

I SWEAR PEOPLE. It took my everything not to take that woman out. I could kill her, I was capable of killing her. BUT she has the medicine.

She has my child’s medicine. 

It doesn’t start out well. Steve’s swearing. I’m pacing and I can’t learn. My entire body is in fight and flight mode and I want to fight, but I realize I need to flight. I take myself out. I go downstairs. Steve will learn. I need to take myself out or I will hurt, I will hurt the woman that I need. I step out of the room, but all I want to do is call this service provider. I want to speak to the boss. I want to speak to them NOW.

Not just for me, but all I keep thinking is about the single mom or the non-native English speaker navigating these waters. I want to talk to your manager. I want to buy you. I want to buy your company and dismantle it. I want to crush you.  I want to FIRE you. That will give me pleasure. I get the “after hours” message, but it says hold on for a rep. I held on for 28 minutes. No answer.

I took a walk. I had to get out. I go to buy Jacob a new toothbrush. I buy 6 and I buy every toothpaste in the aisle. Things taste different now so who knows what will work. So I buy them all.

When I come back Steve is talking to this nurse. Our villain. She is still in our home. She stood between Jacob and his health and now is sitting with my husband. I think they are talking about his cancer. I’m unclear. I just know I have some teeth to brush. 

I go to Jacob. Steve comes down and tells me this nurse’s story. He explains to him the break down in command. How it wasn’t her fault. How there was no one available and she filled in. She is the head of nursing at a hospital. She is kind. She is Jewish. She did us a favor.

But I’m still angry. How is it OUR problem and at the cost of Jacob that a company is understaffed? When a teacher calls in sick, I didn’t call all the parents and say “sorry we just don’t have anyone around.” I just don’t understand.

But Steve heads back up and keeps talking to her for 30 minutes and I slowly, painfully, join. I learn she is modern orthodox. She explains to me all of the GAPS in health care. I’m listening. I’m taking notes. This is what I do. This is MTG’s mission. And she mentions that she missed Shabbat. 

Oh its Friday!  We didn’t realize. Or rather we forgot. How can so much happen in ONE day? It is still Friday? We have done 7 days of work on this one day. How can it still be Friday?!

So we were late, the sun is down, but we AND the home care nurse sat for Shabbat. I had a piece of white toast and candles that I lit on the stove, but we did it. 

With the woman I swore to destroy. A woman that at one point I was calling for her termination. A woman I wished harm. 

We said Kiddush and then she left and she was kind. She has devoted her whole life to children like Jacob. She is an angel. 

Its all a lot to process. Or rather impossible to process. Sometimes I just go numb. Too MUCH INPUT. TOO MUCH INPUT. Like a robot in the movies, I just get quiet and silently power off. I’m still walking around and doing stuff. I’m still taking care of Jacob, but my soul is off.

It’s the darkest of dark and the lightest of light. Within minutes, seconds, even simultaneously. If that is even a thing!!! But it’s real. And it’s freaking crazy way to live. 

It’s an extreme ride.

Can’t be good for those adrenal glands. 

SO listen to me people. You ask how you can help. THIS is how you can help. CALL THIS WOMAN, Tess Sara Jackson. I honestly don’t know how to directly get in touch with her. Things don’t work like that in this world. It is meant to be harder for some reason. Maybe you will have an easier time, but you tell them its not okay. You tell them this is malpractice. You tell them that this is life and death. 

This would make me happy, but make one thing VERY clear…the nurse is NOT at fault. She is a nice woman who did her best. She did the best she can and we PILED more on top of her, exactly what I promised not to do.  Maybe you learn that Tex Sarah Jackson is also piled upon. Okay that’s fine…than let’s FIX it. Use your power for THAT.

Make me a promise?! Please stop. I know what you are capable of moms and dads. I know that WHITE PASTA for some of you is literally the greatest enemy on earth. Or a non organic yogurt. Just stop. Just fucking stop. Seriously. Listen to yourselves. I wish I taped you all when you came in angry about a HW assignment or a bus seat assignment. 

And you don’t know your power. You don’t know how strong you are, there is a power in a parent like no one has even seen. You are wasting it and you may need it one day. And you yell loud and you make all the people who are just trying to help jump. You make us jump for the STUPIDEST things when we are working on such a bigger picture. So stop this behavior RIGHT NOW, because you hurt everyone including your own child in the end. 

BUT I do understand the need to vent. From now on this is the number to use for those Avenues parents. Here: (212) 935-5000. That’s HQ. They sit in desks and know nothing about what they think they know about. They are like Benno. They have all the answers, but yet not a cent of experience to back it with. It’s funny, right? Or a bit ironic? We believe in experiential learning and key to that is EXPERIENCE! It would be good for them to understand the day to day functioning of a school. AND they don’t have to schedule when they get to pee every day. Their available. Call them.

Your anger is dangerous and powerful. Use it wisely.

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