Friends of Nightwing

Dear friends of Nightwing,

I’m shaking as I write this after receiving another package. I feel so filled with love. Jacob feels so filled with love.

My whole body thanks you. My whole soul thanks you. The love. God the love I feel. The gifts that have arrived, the notes that have shown up in my inbox (and Steve’s), the texts, the offers of support…endless.

You have given me strength. Today I was low, but tonight I feel invincible.

One example of what you have done (it may feel small, but its SO big):

Jacob pees the bed pretty much every hour as they give him drugs to pee so the chemo doesn’t destroy the lining of his bladder. It makes the nights a terror. Every hour we are up changing the sheets. We sleep very little. By the time nursing comes, and the sheets are changed, its a good a 30 minute ordeal.

Last night I especially struggled. I’m supposed to capture the pee when I can. I take this job seriously. I don’t play, I play to win. Last night I captured a lot in the pee cup. However, my shaking, nervous, exhausted hands spilled it. Everywhere. All over him. All over me. All the pee gone. And another hour of his sleep gone. The rest his body needs to fight.

And he said “you are making the night worse.” I was making the night worse. I berated myself for an hour. Didn’t go back to sleep. Determined to get more pee. I had one job. Capture his pee when I can so they can test it, to monitor the chemicals in his body, and I blew it. I spilled them all over. Did I hurt his treatment? Dumb dumb dumb. So dumb. Damn it Abby.

But after receiving the Friends of Nightwings package, I went into tonight recharged (literally, I got some extension cables for my phone! Thank you for that) and kicked some pee ass. I had the ability to think clearly and problem solve. I thought of an idea to capture the pee like a diaper without wearing a diaper (he refuses to wear one). I did it. Its working. Maybe we can sleep tonight. Wouldn’t that be something.

Thank you Friends of Nightwing.

You make me whole again. You have no idea how much I love you. You have no idea how much I need you.

I’m realizing now everyone doesn’t need a Robin in life, that’s what Alexa/ Go Google/ personal assistants are for. Everyone needs their own Nightwing.

I’m lucky I have a whole crew of kick ass moms as my Nightwing. Nothing tougher than that.

Seriously I know. I was their principal once. I really know. I’ve seen what they can do. These are some tough ass bitches who rule the world. I like to think of myself as one too.

Abby

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5 Comments

  1. Hi Abby, Jacob and Family. You don’t know me, but I saw your gofundme page through Jim Gaffigan on Facebook. In March of this year, my then 4, now 5 year old daughter was diagnosed with stage 4 neuroblastoma. She is now on her second day of her 5th round of chemotherapy.

    Your story of the McDonald’s French fry reminded me of my daughter eating all of her once favorites too. When she completed her first round of chemo her favorite food was the inside of peanut butter crackers.

    You will get through this and all of the other obstacles to come. You will find joy and laugh again. Even if it doesn’t seem like it. Stay strong for you, your family, and most importantly your son.

    I just wanted to say I am thinking of your family and am praying for Jacob’s full recovery. I have heard that this is a less common type of cancer so to hear of other families going through this is helpful if that makes sense. I will be following your blog.

    Take care,

    Stephanie

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  2. Dear Abby, I have been following your blog and my prayers and love are with dear Jacob and your whole family. I am knitting a hat for Jacob. Please let me know the best place to send it. I was going to ship to the hospital if that’s ok? Sending lots of love ❤️ Risa

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    1. This is so kind. Send to the house. 200 Mercer St. They have crazy rules here (for good reasons) and they may have issue with the fabric or something. Who knows🤦‍♀️. But Jacob has no allergies to any Fabric so send it to the house and we will get it. Thank you

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      1. Totally understand. If there is any issue with the type of yarn I will knit others. My pleasure. Lots of love. 😘

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