(a post from our
Helping Hands website)
Dear Friends of Eddie,
I finally was able to connect with Kori this evening by phone. Usually, we talk a few times a week. It's been unusual that we have gone so long without talking--this is my fault, as the start of my semester has coincided with illness in our family and other family issues that have made it really hard for me to get to the phone. And I feel terribly about it, because these last weeks for Eddie have been really, really rough.
Eddie has been in and out of Children's a few times in the last 2 weeks. They decided to send him home with a "better" nursing company to help with his care (previously they were saying he wouldn't be able to go home, but they couldn't find a place for him in an adequate rehab hospital/facility). After going home originally, he went into respiratory distress and went back to the hospital. Then home again. Then back to the hospital with pneumonia and the flu.
He's home again--he's been home for 2 da ys. In that time, NO nurses have been to help Eddie and his family. You heard me right. For two days, Kori has been providing her son round-the-clock care, even as she is fighting off her own feverish cold.
As we were wrapping up the conversation, I learned, too, that Kori can't go anywhere anymore without a nurse to help her. She can't take Eddie to Boston without a nurse to bag him while she switches his machine. She can't pick up her other son Marshall from school--he now takes the bus. She can't run errands, go grocery shopping, pick up food, drive through a drive-thru. She nearly didn't mention this, but when I asked she admitted, yes. Yes, it's true. She's home bound until help arrives. While we were talking, the doorbell rang with a pizza she had ordered. Which just about broke my heart, because it's a Monday and I should have checked our food sign-up calendar and filled in the gaps where there are some.
I really wish you could meet Kori. She is one tough cookie. She's doing all she should--advocating for the ridiculousness of the situation (and the seriousness of it, and the unsustainability of it) with everyone--the transplant team, the hospital, the nursing company, the insurance companies.
In the meantime, despite her protests to the contrary, I told her I would send out another ask on her behalf. She really doesn't like asking for help. But I told her again: When people like us hear about people like her, we want to DO something. So few folks in the world know a family like Eddie's, let alone live the kind of life they are living. It's not just. It's heartbreaking. It's sad. I told Kori tonight that her life really, really sucks, and she laughed and we talked about starting a new (not-so-uplifting) line of Hallmark cards.
That's the thing: Kori laughs. Easily still. She really is a remarkable, amazing person and mother.
In any case, I'm asking again: There are a lot of open spaces for meal deliveries in February. One of my dear friends from Lynn, who owns a Chinese restaurant and usually delivered food to Eddie just about every week, is tending to a death in her family back in China, so she's not available, leaving even more vacancies on our online Help Calendar. That's a good thing, because maybe the rest of us can do just a little bit more--sign up for just one more date in February, each of us. If we all did that, we would all be doing SOMETHING. It's a drop in the bucket, but many drops of kindness a well-loved heart make. It's February, for goodness sake. I can't think of any other way I'd rather observe the spirit of Valentine's Day than sharing kindness with a kid and his family who really, really need something warm and loving to happen for them right now.
Thank you for all you've done already. I am humbled to know you all, and truly, indescribably grateful to you for all the love you continue to pour out on Eddie and his family.
On behalf of Kori and her kids--thank you, and bless you.
Love,
Melissa
mnwinchell (at) hotmail
