(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
Monday, February 4, 2013
Friday, January 18, 2013
nourishing life
There is something rather universal, I think, about the way in which we send food to one another when times are tough. We deliver meals to new moms and dads. When a parent dies, we bring by a pizza to our grieving friend. And when kids are in the hospital, we show up with snacks or bring meals to the rest of the family at home.
What we wish we could do is wave a magic wand and get rid of pain and suffering and sickness. Especially in children.
But we can't. So we make a lasagna in a foil pan, or call to have groceries delivered, or mail a Dunkin Donuts gift card. Take it and eat, we seem to say to one another. Nourishment in this very concrete form is one way we hold out hope--life is still worth living! eat and sustain yourself!--and keep the darkness at bay.
That's why I appreciate so much all you have done in these last couple months to nourish Eddie's family. Eddie remains in the ICU--he will not be coming home, the doctors have said, until he receives a double lung transplant. This is really terrible news. Meanwhile his mom, Kori, rushes between the hospital and her home many times a day, trying to sustain both of her boys--Eddie in the hospital, Marshall at home.
It's an in-need-of-extra-nourishment kind of life.
We have lots of opportunities to help them in the coming months as they wait for Kori's beeper to ring, announcing the arrival of new lungs for Eddie. If you are able to make and deliver a meal, consider joining our community group online and signing up on our online calendar at https://www.lotsahelpinghands.com/c/664128/ You'll have to request membership there; please do!
And if you're not nearby to their hometown in Salem, MA but would like to help, consider these options:
Consider calling in a meal for them from a local restaurant or delivery shop. We usually have meals delivered there about 5:30 p.m. (it's helpful to us if you join the online community and put this on the calendar so Kori can see which days to expect deliveries). Local restaurants they enjoy include:
Yan's China Bistro in Swampscott (781) 593-3308
John's Roast Beef in Lynn (781) 595-6105
Mandee's Pizza in Salem (978) 745-6400
Or, consider mailing a gift card for food to the family; those can be super helpful to them on days we haven't signed up to bring or deliver them a meal--which include weekends--and when Kori is in Boston at the hospital. Restaurant gift cards you might consider (that are local for them) include: Panera, Bertuccis, lots of fast food places (McDonald's, Burger King, and Taco Bell are all within walking distance of their home), Au Bon Pain (for use at the hospital), and Dunkin Donuts. Finally, nearby grocery stores (should you want to purchase a gift card and/or have groceries delivered to them) include Shaw's on Highland Avenue in Salem, Market Basket (same location), and Whole Foods (in Swampscott). (To request their mailing address, please email me at mnwinchell (at) hotmail).
Whatever you choose to do, know that your kindness is so much appreciated. What we do when we feed each other is, perhaps, one of the simplest and most profound ways we have to celebrate and encourage life in the midst of painful and nearly-insurmountable circumstances.
Thank you for being a nourishing-friend to Eddie and his family,
Melissa for Eddie's Fund
What we wish we could do is wave a magic wand and get rid of pain and suffering and sickness. Especially in children.
But we can't. So we make a lasagna in a foil pan, or call to have groceries delivered, or mail a Dunkin Donuts gift card. Take it and eat, we seem to say to one another. Nourishment in this very concrete form is one way we hold out hope--life is still worth living! eat and sustain yourself!--and keep the darkness at bay.
That's why I appreciate so much all you have done in these last couple months to nourish Eddie's family. Eddie remains in the ICU--he will not be coming home, the doctors have said, until he receives a double lung transplant. This is really terrible news. Meanwhile his mom, Kori, rushes between the hospital and her home many times a day, trying to sustain both of her boys--Eddie in the hospital, Marshall at home.
It's an in-need-of-extra-nourishment kind of life.
We have lots of opportunities to help them in the coming months as they wait for Kori's beeper to ring, announcing the arrival of new lungs for Eddie. If you are able to make and deliver a meal, consider joining our community group online and signing up on our online calendar at https://www.lotsahelpinghands.com/c/664128/ You'll have to request membership there; please do!
And if you're not nearby to their hometown in Salem, MA but would like to help, consider these options:
Consider calling in a meal for them from a local restaurant or delivery shop. We usually have meals delivered there about 5:30 p.m. (it's helpful to us if you join the online community and put this on the calendar so Kori can see which days to expect deliveries). Local restaurants they enjoy include:
Yan's China Bistro in Swampscott (781) 593-3308
John's Roast Beef in Lynn (781) 595-6105
Mandee's Pizza in Salem (978) 745-6400
Or, consider mailing a gift card for food to the family; those can be super helpful to them on days we haven't signed up to bring or deliver them a meal--which include weekends--and when Kori is in Boston at the hospital. Restaurant gift cards you might consider (that are local for them) include: Panera, Bertuccis, lots of fast food places (McDonald's, Burger King, and Taco Bell are all within walking distance of their home), Au Bon Pain (for use at the hospital), and Dunkin Donuts. Finally, nearby grocery stores (should you want to purchase a gift card and/or have groceries delivered to them) include Shaw's on Highland Avenue in Salem, Market Basket (same location), and Whole Foods (in Swampscott). (To request their mailing address, please email me at mnwinchell (at) hotmail).
Whatever you choose to do, know that your kindness is so much appreciated. What we do when we feed each other is, perhaps, one of the simplest and most profound ways we have to celebrate and encourage life in the midst of painful and nearly-insurmountable circumstances.
Thank you for being a nourishing-friend to Eddie and his family,
Melissa for Eddie's Fund
Tuesday, January 8, 2013
on being in the muck...
(a re-post from Facebook)
I've spent my day tending to a sick (but slowly recovering) Moriah. She has the flu; no pneumonia (we did a chest X-ray today to be sure). Her fever has broken. I'm so grateful to have had this day with her; she was surprisingly sunny for a girl so sick. She will stay home again tomorrow, too, as she works to fend off this flu.
The truth is this morning I woke up after only a couple hours of sleep feeling a bit sorry for myself. There are lots of things that help me when I feel this way. One is gratitude, and when I woke up on Moriah's floor this morning feeling that bit of self-pity, I looked into her sleeping face and decided to give a lot of thanks for her little life, which is challenged so often. My thanks was suddenly crystal clear: Thank you, God, that she is here. Thank you.
And here's a less spiritual and less high-minded mind trick that works, too: I often turn my attention to folks who are in this muck with me. I spent a very busy day changing pants and Pull-Ups and driving to and from X-ray and attending to a needy girl. But part of the busyness of my day was also the texts and phone calls and voice mails I received. One friend whose son has special needs who was also trekking to a hospital today for tests, and will go back tomorrow for more. Another who cares for her son at home, day in and day out, and messaged me on Facebook. Another who I reached by phone, whose kids with special needs are all sick and all on antibiotics, who was also up a lot of the night last night.
And, of course, Eddie. Our bone marrow transplant friend Eddie. His mom and I have texted back and forth a lot today, and the news has not been good. Eddie has been in the ICU again this past week, and he is in seriously declining health, and he needs a double lung transplant, and soon. Today brought more difficult and painful news--the kind of news that makes a mom's heart almost physically rip in two--and I cried on and off through the day with Eddie's mom today, and prayed for her, and for him.
If you need perspective on your life, friends--if you want to be convinced that you are not being singled out for suffering, or difficulty, or sadness--I'd suggest you befriend a family with special needs near you. Because walking through life with others who are sick, and disabled, and struggling...this is some of the best spiritual medicine I know. It's not a magic bullet. It's life-with. You look up and realize you are surrounded by folks who are in the muck with you, and this does something to your heart, to turn your attention from the muck to the people stuck there with you.
We can't do much about the muck, you and I. We can look up, though, see that we are not alone, find comfort in our community of muck-ers, and pass along to one another what we know about life-as-muckiness.
This is friendship. So to all my dear friends who texted and called and Facebooked me today--to all whose kids are also sick and struggling, fighting for their lives or living with disabilities--thank you for saving me from my pity party today. I wouldn't survive the muck without you. I owe you my sanity, and by that I mean, my life.
I've spent my day tending to a sick (but slowly recovering) Moriah. She has the flu; no pneumonia (we did a chest X-ray today to be sure). Her fever has broken. I'm so grateful to have had this day with her; she was surprisingly sunny for a girl so sick. She will stay home again tomorrow, too, as she works to fend off this flu.
The truth is this morning I woke up after only a couple hours of sleep feeling a bit sorry for myself. There are lots of things that help me when I feel this way. One is gratitude, and when I woke up on Moriah's floor this morning feeling that bit of self-pity, I looked into her sleeping face and decided to give a lot of thanks for her little life, which is challenged so often. My thanks was suddenly crystal clear: Thank you, God, that she is here. Thank you.
And here's a less spiritual and less high-minded mind trick that works, too: I often turn my attention to folks who are in this muck with me. I spent a very busy day changing pants and Pull-Ups and driving to and from X-ray and attending to a needy girl. But part of the busyness of my day was also the texts and phone calls and voice mails I received. One friend whose son has special needs who was also trekking to a hospital today for tests, and will go back tomorrow for more. Another who cares for her son at home, day in and day out, and messaged me on Facebook. Another who I reached by phone, whose kids with special needs are all sick and all on antibiotics, who was also up a lot of the night last night.
And, of course, Eddie. Our bone marrow transplant friend Eddie. His mom and I have texted back and forth a lot today, and the news has not been good. Eddie has been in the ICU again this past week, and he is in seriously declining health, and he needs a double lung transplant, and soon. Today brought more difficult and painful news--the kind of news that makes a mom's heart almost physically rip in two--and I cried on and off through the day with Eddie's mom today, and prayed for her, and for him.
If you need perspective on your life, friends--if you want to be convinced that you are not being singled out for suffering, or difficulty, or sadness--I'd suggest you befriend a family with special needs near you. Because walking through life with others who are sick, and disabled, and struggling...this is some of the best spiritual medicine I know. It's not a magic bullet. It's life-with. You look up and realize you are surrounded by folks who are in the muck with you, and this does something to your heart, to turn your attention from the muck to the people stuck there with you.
We can't do much about the muck, you and I. We can look up, though, see that we are not alone, find comfort in our community of muck-ers, and pass along to one another what we know about life-as-muckiness.
This is friendship. So to all my dear friends who texted and called and Facebooked me today--to all whose kids are also sick and struggling, fighting for their lives or living with disabilities--thank you for saving me from my pity party today. I wouldn't survive the muck without you. I owe you my sanity, and by that I mean, my life.
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