Dear Supporters of Eddie's Fund,
You are AMAZING! We raised our $1,000 in a week and a half.
In fact, all together, you donated over $2,000 to Eddie's Fund this holiday season! In November, I was concerned because we didn't have enough to pay some December bills for the family, and to give them the Thanksgiving meal we usually provide...I put out a simple appeal, no prizes, no frills, nothing at all in it for any of you...and this has been our biggest fundraiser this year.
I'm speechless, especially because we've met our goal tonight, as Eddie settles into Children's Hospital for another overnight stay and MRI of his lungs. The doctors want to be sure his lungs are infection-free so that if lungs become available over the holidays, he could be ready to receive them.
So tonight I'm particularly grateful thatin a world with so much sadness and suffering, you each shine the lights you can--a meal here, a card sent in the mail there, $20, $100, $600, a commitment to give a little each month this year--and the result is a big, big glow.
Thank you, dear friends. Kori told me yesterday that she would not have survived these years without the love and encouragement they have received through Eddie's Fund...and I could never have imagined, back in 2006 when she and I met during our sons' bone marrow transplants, that her friends would become mine, and mine hers, and that the meeting of our two worlds would make the world for one brave kid so much brighter.
Merry, merry Christmas to you all, from Eddie's family and my own.
Melissa
Thursday, December 19, 2013
Monday, December 9, 2013
The Giving-est Week of the Year
Dear Friends,
Let's try together to donate $1,000 for Eddie's Fund this week. If just 40 folks give $25, we'd have $1,000, which would pay the bills the Fund covers for Eddie's family for over 3 months!
Tell your friends: When they donate $25 or more, Eddie's Fund will email them this gift card (http://bit.ly/1aMaIiy) to print and personalize as a gift for a friend or family member. Giving to others is truly the best holiday gift around!
You and your friends can make your online donations using PayPal and our link on the right. On behalf of Eddie and his family, thank you for your support of Eddie's ongoing recovery...let's make this week our giving-est of the holiday season so far!
With love,
Melissa for Eddie's Fund
Tell your friends: When they donate $25 or more, Eddie's Fund will email them this gift card (http://bit.ly/1aMaIiy) to print and personalize as a gift for a friend or family member. Giving to others is truly the best holiday gift around!
You and your friends can make your online donations using PayPal and our link on the right. On behalf of Eddie and his family, thank you for your support of Eddie's ongoing recovery...let's make this week our giving-est of the holiday season so far!
With love,
Melissa for Eddie's Fund
Friday, November 22, 2013
Share Eddie-Love this Holiday Season
Dear Friends,
The holiday season is here! And Eddie's Fund would like to invite you to consider a donation to the Fund as a gift for a friend or family member this holiday season.
Eddie's Fund has reached an all-time low; by the end of December, there will be no money in the Fund at all. As you know, Eddie's situation is no better--Eddie has been in and out of the hospital and is waiting to be re-listed on the lung transplant list, Kori is still unable to work, and the Fund continues to help Eddie and his family pay bills every month.
That's why your support of the Fund this holiday season is not just a nice idea--it's crucial.
Those who donate $25 or more to Eddie's Fund between now and Christmas will receive by email a gift card that can be printed and given to a family member or friend. You can see the gift card here. The card makes a beautiful gift and lets your friend know that you gave the best gift of all--a donation in their name to a deserving boy and his family.
You can donate online via PayPal using our link on this webpage.
Thank you for supporting Eddie's Fund this holiday season! Your support and care for Eddie and his family means so much, especially this month and particularly during this season of peace and goodwill.
Happy holidays!
Melissa for Eddie's Fund
The holiday season is here! And Eddie's Fund would like to invite you to consider a donation to the Fund as a gift for a friend or family member this holiday season.
Eddie's Fund has reached an all-time low; by the end of December, there will be no money in the Fund at all. As you know, Eddie's situation is no better--Eddie has been in and out of the hospital and is waiting to be re-listed on the lung transplant list, Kori is still unable to work, and the Fund continues to help Eddie and his family pay bills every month.
That's why your support of the Fund this holiday season is not just a nice idea--it's crucial.
Those who donate $25 or more to Eddie's Fund between now and Christmas will receive by email a gift card that can be printed and given to a family member or friend. You can see the gift card here. The card makes a beautiful gift and lets your friend know that you gave the best gift of all--a donation in their name to a deserving boy and his family.
You can donate online via PayPal using our link on this webpage.
Thank you for supporting Eddie's Fund this holiday season! Your support and care for Eddie and his family means so much, especially this month and particularly during this season of peace and goodwill.
Happy holidays!
Melissa for Eddie's Fund
Wednesday, October 30, 2013
Update on Eddie
Dear Supporters of Eddie's Fund:
Eddie has really been struggling this last month. His lungs are worsening and he's been removed from the lung transplant list because he's so sick.
Last night he was rushed again to the hospital; he's having difficulty breathing.
Please do keep our friend Eddie in your thoughts and prayers today. As you can imagine, this is a sad and exhausting time for him, his mom Kori, and his family.
Thank you, as always, for your support of the Fund and of Eddie.
Gratefully,
Melissa for Eddie's Fund
Eddie has really been struggling this last month. His lungs are worsening and he's been removed from the lung transplant list because he's so sick.
Last night he was rushed again to the hospital; he's having difficulty breathing.
Please do keep our friend Eddie in your thoughts and prayers today. As you can imagine, this is a sad and exhausting time for him, his mom Kori, and his family.
Thank you, as always, for your support of the Fund and of Eddie.
Gratefully,
Melissa for Eddie's Fund
Tuesday, October 8, 2013
About Eddie...and all of us
Dear Eddie's Fund Supporters:
Many of you have become friends with me, at least via Facebook. As you know, I write each October nearly every day about living with a child with Down syndrome. Our daughter has Down syndrome; after our son survived his bone marrow transplant, she was born and we re-entered the craziness of a medically-difficult life. I think this is why Eddie's mom and I have been able to stay such close friends; my family's difficulties will never compare to hers, but at least when she talks about a procedure, a med, or the outrageous parking fees at the hospital, I can relate, mostly.
Here is today's post, which was inspired by a conversation I had tonight with Kori, Eddie's mom. Eddie has now been in the ICU for three weeks; he is sick with a spinal infection and we are all worried about him. I could never say enough about those of you who have brought meals, bought them an EasyPass for tolls, and sent donations during this time...I am always, eternally, grateful for each of you.
Give your kids big hugs tonight.
Melissa for Eddie's Fund
My post for Tuesday, October 8th of National Down Syndrome Awareness Month:
I did not go to work today. It was a planned day off; Moriah had an appointment in Boston, and Jason and I are trying, whenever possible, to double-team the more important appointments. Jason keeps Moriah occupied while I talk, take notes, and read my notes that help me keep track of one specialist’s questions for the other, and my own for all of them.
This morning I grabbed a piece of clothing from the back of my closet on my way out the door to the hospital. I thought it was one of my zip-up hoodie sweatshirts; turns out it was a zip-up warm-up jacket in the same color. I put it on in a hurry, and as I was rushing to the door suddenly realized something: That particular jacket is the only piece of clothing I still have from my limited (by two hospital drawers) wardrobe selection during our son’s two-month isolated bone marrow transplant stay at the same Boston hospital. The memories came flooding back after that: Morning jogs on the Fens in that jacket, walks across the street to Starbucks with the jacket tied around my waist, lying down in the garden of Harvard’s Public Health campus nearby in the jacket to weep.
Moriah’s appointment went as it always goes, which is to say, with more heaviness than even we (with our dark senses of humor now fully formed) expected. We waited over an hour to be seen. We heard scary possibilities for future tests and possible diagnoses (the doctor would only name one of these after I promised not to Google it). We were told to call Moriah’s neurologist to explore yet-another scary possibility. We received, as usual, no answers, but were grateful (if that word even applies here) for the sharp mind of this doctor, who brainstormed all kinds of next steps with us. And, as usual, we sat through a traffic accident on the way home and spent hours in the minivan. Which, also as usual, was perfect (which I say with sarcasm) for the half dozen phone calls to doctors I had to make after our visit, given all the new avenues to explore, appointments to change, and a new specialist to add.
I came home tired, but not as exhausted as I often am, and played with Moriah some until she asked for a bath. And as
she was sitting in the tub, making imaginary cup of coffee after cup of coffee for me with her bathwater (that girl knows me all too well), the phone rang. It was my friend, Kori, whose son Eddie has been in the ICU for three weeks now; as most of you know, we met Eddie during our son’s bone marrow transplant. While our son has gone on to health, Eddie has not (you can read more of Eddie’s story here). He is waiting for a double lung transplant, has a serious spinal infection, and has been removed again from the transplant list. He is really sick. We who know Eddie are worried that he is running out of time. I pulled Moriah out of the tub, dressed her, and made it to the supper table before the tears caught up with me. Because there is one memory I just cannot shake: Kori, me, and another mom standing in the hallway of the bone marrow transplant floor. Usually, we were not allowed to congregate (for fear of germ-spreading, each child and their parent were intentionally isolated from one another as our kids’ immune systems were so susceptible after radiation, chemo, and the transplants themselves). As the two other moms and I talked about life on the transplant floor, and marveled at how far removed we were from our “normal” lives, I had an out-of-the-body experience I have never forgotten: I was suddenly looking down at the three of us, and talking to God, and asking, “Which of our children survives this thing?” The silence was deafening.
The other mom’s little girl passed many years ago. Eddie is really unwell. And though my own son, and Moriah, have been through life-saving measures in that Boston hospital and made it through to the other side, the pain is palpable for me too. Like my blue jacket, the grief hangs on my body until I succumb, finally, to weeping, my tears inadequate to release any of my friends, or my own children, from the heaviness of suffering in this life. Tonight, I pray for strength for all of us to bear its weight.
Many of you have become friends with me, at least via Facebook. As you know, I write each October nearly every day about living with a child with Down syndrome. Our daughter has Down syndrome; after our son survived his bone marrow transplant, she was born and we re-entered the craziness of a medically-difficult life. I think this is why Eddie's mom and I have been able to stay such close friends; my family's difficulties will never compare to hers, but at least when she talks about a procedure, a med, or the outrageous parking fees at the hospital, I can relate, mostly.
Here is today's post, which was inspired by a conversation I had tonight with Kori, Eddie's mom. Eddie has now been in the ICU for three weeks; he is sick with a spinal infection and we are all worried about him. I could never say enough about those of you who have brought meals, bought them an EasyPass for tolls, and sent donations during this time...I am always, eternally, grateful for each of you.
Give your kids big hugs tonight.
Melissa for Eddie's Fund
My post for Tuesday, October 8th of National Down Syndrome Awareness Month:
I did not go to work today. It was a planned day off; Moriah had an appointment in Boston, and Jason and I are trying, whenever possible, to double-team the more important appointments. Jason keeps Moriah occupied while I talk, take notes, and read my notes that help me keep track of one specialist’s questions for the other, and my own for all of them.
This morning I grabbed a piece of clothing from the back of my closet on my way out the door to the hospital. I thought it was one of my zip-up hoodie sweatshirts; turns out it was a zip-up warm-up jacket in the same color. I put it on in a hurry, and as I was rushing to the door suddenly realized something: That particular jacket is the only piece of clothing I still have from my limited (by two hospital drawers) wardrobe selection during our son’s two-month isolated bone marrow transplant stay at the same Boston hospital. The memories came flooding back after that: Morning jogs on the Fens in that jacket, walks across the street to Starbucks with the jacket tied around my waist, lying down in the garden of Harvard’s Public Health campus nearby in the jacket to weep.
Moriah’s appointment went as it always goes, which is to say, with more heaviness than even we (with our dark senses of humor now fully formed) expected. We waited over an hour to be seen. We heard scary possibilities for future tests and possible diagnoses (the doctor would only name one of these after I promised not to Google it). We were told to call Moriah’s neurologist to explore yet-another scary possibility. We received, as usual, no answers, but were grateful (if that word even applies here) for the sharp mind of this doctor, who brainstormed all kinds of next steps with us. And, as usual, we sat through a traffic accident on the way home and spent hours in the minivan. Which, also as usual, was perfect (which I say with sarcasm) for the half dozen phone calls to doctors I had to make after our visit, given all the new avenues to explore, appointments to change, and a new specialist to add.
I came home tired, but not as exhausted as I often am, and played with Moriah some until she asked for a bath. And as
she was sitting in the tub, making imaginary cup of coffee after cup of coffee for me with her bathwater (that girl knows me all too well), the phone rang. It was my friend, Kori, whose son Eddie has been in the ICU for three weeks now; as most of you know, we met Eddie during our son’s bone marrow transplant. While our son has gone on to health, Eddie has not (you can read more of Eddie’s story here). He is waiting for a double lung transplant, has a serious spinal infection, and has been removed again from the transplant list. He is really sick. We who know Eddie are worried that he is running out of time. I pulled Moriah out of the tub, dressed her, and made it to the supper table before the tears caught up with me. Because there is one memory I just cannot shake: Kori, me, and another mom standing in the hallway of the bone marrow transplant floor. Usually, we were not allowed to congregate (for fear of germ-spreading, each child and their parent were intentionally isolated from one another as our kids’ immune systems were so susceptible after radiation, chemo, and the transplants themselves). As the two other moms and I talked about life on the transplant floor, and marveled at how far removed we were from our “normal” lives, I had an out-of-the-body experience I have never forgotten: I was suddenly looking down at the three of us, and talking to God, and asking, “Which of our children survives this thing?” The silence was deafening.
The other mom’s little girl passed many years ago. Eddie is really unwell. And though my own son, and Moriah, have been through life-saving measures in that Boston hospital and made it through to the other side, the pain is palpable for me too. Like my blue jacket, the grief hangs on my body until I succumb, finally, to weeping, my tears inadequate to release any of my friends, or my own children, from the heaviness of suffering in this life. Tonight, I pray for strength for all of us to bear its weight.
Tuesday, August 20, 2013
August news
Dear Eddie's Fund Supporters,
Thank you again for your donations during our July fundraiser. Our winner, K, attended the Red Sox game and batting practice with the Fund's thank-you tickets (a big thank you to our friend, M, for donating them to us for our giveaway) and was kind enough to email a photo to share with the group. If you look at the background, you can see Big Papi standing there! I'm so glad you had a great time, K, and appreciate the support so many of you showed last month.
As some of you may have heard through our Facebook updates, Eddie has had a very bad week this week. In fact, it's probably the worst he's been through; we're grateful to hear today from Kori that he seems to be recovering, though he remains in the ICU. As she told me today, the lung transplant team says Eddie needed his double lungs "yesterday." Please pray with us for courage, strength, and a fighter's will for Eddie--and his entire family. Eddie really does need a miracle.
I'm grateful to so many of you who have continued to donate, brought meals to Eddie's brother and grandfather, visited, sent gifts by mail...I know Eddie and his mom draw a lot of strength from our support, our prayers, and our love.
On behalf of Eddie and his family, we appreciate you.
Melissa
Thank you again for your donations during our July fundraiser. Our winner, K, attended the Red Sox game and batting practice with the Fund's thank-you tickets (a big thank you to our friend, M, for donating them to us for our giveaway) and was kind enough to email a photo to share with the group. If you look at the background, you can see Big Papi standing there! I'm so glad you had a great time, K, and appreciate the support so many of you showed last month.
As some of you may have heard through our Facebook updates, Eddie has had a very bad week this week. In fact, it's probably the worst he's been through; we're grateful to hear today from Kori that he seems to be recovering, though he remains in the ICU. As she told me today, the lung transplant team says Eddie needed his double lungs "yesterday." Please pray with us for courage, strength, and a fighter's will for Eddie--and his entire family. Eddie really does need a miracle.
I'm grateful to so many of you who have continued to donate, brought meals to Eddie's brother and grandfather, visited, sent gifts by mail...I know Eddie and his mom draw a lot of strength from our support, our prayers, and our love.
On behalf of Eddie and his family, we appreciate you.
Melissa
Thursday, August 1, 2013
Thank you!
Another successful fundraiser for Eddie's Fund. Thank you all for making our Comeback Kid fundraiser a success! The donor we are thanking has been randomly selected via random . org and notified via email.
Our family is so grateful for all the ways you continue to follow Eddie's story and support him and his family--in every fundraiser, you prove yourselves so generous and kind. I know that knowing you all are out there is a large part of what keeps Eddie and his mom going forward each day.
Thank you again from all of us.
Our family is so grateful for all the ways you continue to follow Eddie's story and support him and his family--in every fundraiser, you prove yourselves so generous and kind. I know that knowing you all are out there is a large part of what keeps Eddie and his mom going forward each day.
Thank you again from all of us.
Wednesday, July 24, 2013
Good news!
As of last week, Eddie has been returned to the double lung transplant list, now that his infection is under control!
He is the ultimate Comeback Kid!
And we have just 7 days left to our July Comeback Kid Giveaway. Donate in this last week of the month; one donor will receive a big gift of thanks from us--tickets and a batting practice tour at an upcoming Red Sox v. Yankees game!
Thank you as always for your support of Eddie's Fund, and your care for Eddie.
He is the ultimate Comeback Kid!
And we have just 7 days left to our July Comeback Kid Giveaway. Donate in this last week of the month; one donor will receive a big gift of thanks from us--tickets and a batting practice tour at an upcoming Red Sox v. Yankees game!
Thank you as always for your support of Eddie's Fund, and your care for Eddie.
Sunday, July 14, 2013
Eddie's Fund Comeback Kid Giveaway
Dear Friends of Eddie's Fund:
We're so happy to invite you to participate in our 2-week Eddie's Fund Comeback Kid Giveaway.
Here's how it works: for every $10 you donate between now and July 31, you will have an opportunity to receive an amazing thank-you gift from Boston's favorite comeback team...the Boston Red Sox.
We have just one thank you gift to give away and it includes:
2 tickets to the Boston Red Sox versus New York Yankees game on Sunday, August 18th at 4:05 p.m.
A one of a kind Fenway batting practice tour which (weather permitting) begins 2-1/2 hours before the first pitch. The tour includes: a special view of batting practice from the warning track, plenty of up-close photo ops during batting practice (bring your cameras!), a special tour of Fenway from a Fenway Ambassador (possible Green Monster and Right Field Roof viewing)...and much more!
We're really grateful to a friend of Eddie's Fund for donating this amazing thank you gift...and we'd LOVE for you to be the one to whom we give it.
So for every $10 donation you make from now through July 31st, you'll receive one (1) entry...donate $20 and you get 2 entries, $50 will get you you 5 entries, $100 10 entries, $1000 100 entries, and so on. Please use the "Donate" Pay Pal button in the right sidebar of the Fund's website; PayPal gives us word of your donation and your email address, which we'll use to contact our well-thanked donor on August 1st. (Please note that we use a third-party website which randomizes and selects our winner for us to ensure fairness).
Share the news with your family and friends! Let's cheer Eddie on and let him know that we are rooting for him to be Boston's Comeback Kid this summer! A lung transplant for him would be a true home run, and we appreciate all you're doing to be a part of Eddie's ever-growing fan club.
With thanks,
Melissa for Eddie's Fund
We're so happy to invite you to participate in our 2-week Eddie's Fund Comeback Kid Giveaway.
Here's how it works: for every $10 you donate between now and July 31, you will have an opportunity to receive an amazing thank-you gift from Boston's favorite comeback team...the Boston Red Sox.
We have just one thank you gift to give away and it includes:
2 tickets to the Boston Red Sox versus New York Yankees game on Sunday, August 18th at 4:05 p.m.
A one of a kind Fenway batting practice tour which (weather permitting) begins 2-1/2 hours before the first pitch. The tour includes: a special view of batting practice from the warning track, plenty of up-close photo ops during batting practice (bring your cameras!), a special tour of Fenway from a Fenway Ambassador (possible Green Monster and Right Field Roof viewing)...and much more!
We're really grateful to a friend of Eddie's Fund for donating this amazing thank you gift...and we'd LOVE for you to be the one to whom we give it.
So for every $10 donation you make from now through July 31st, you'll receive one (1) entry...donate $20 and you get 2 entries, $50 will get you you 5 entries, $100 10 entries, $1000 100 entries, and so on. Please use the "Donate" Pay Pal button in the right sidebar of the Fund's website; PayPal gives us word of your donation and your email address, which we'll use to contact our well-thanked donor on August 1st. (Please note that we use a third-party website which randomizes and selects our winner for us to ensure fairness).
Share the news with your family and friends! Let's cheer Eddie on and let him know that we are rooting for him to be Boston's Comeback Kid this summer! A lung transplant for him would be a true home run, and we appreciate all you're doing to be a part of Eddie's ever-growing fan club.
With thanks,
Melissa for Eddie's Fund
Tuesday, June 4, 2013
June Thirty-One Fundraiser to Benefit Eddie's Fund!
Dear Friends,
Please consider participating in our June fundraiser--organized by a loyal friend of Eddie's Fund--this month.
By purchasing from Thirty-One online (visit this link, choose My Parties, and then choose Eddie's Fund), all of the proceeds from your purchase will be donated to Eddie's Fund. This month, you can buy that new beach tote or purse...and know that your purchase has a lot of goodwill attached to it. Spread the word!
Please, and thank you!
(and many thanks to our friend, Susanna, for organizing the fundraiser)
Melissa for Eddie's Fund
Please consider participating in our June fundraiser--organized by a loyal friend of Eddie's Fund--this month.
By purchasing from Thirty-One online (visit this link, choose My Parties, and then choose Eddie's Fund), all of the proceeds from your purchase will be donated to Eddie's Fund. This month, you can buy that new beach tote or purse...and know that your purchase has a lot of goodwill attached to it. Spread the word!
Please, and thank you!
(and many thanks to our friend, Susanna, for organizing the fundraiser)
Melissa for Eddie's Fund
Saturday, May 25, 2013
An update on Eddie & his family's needs
Dear Friends:
I've talked with Kori a couple times in the last couple days. Eddie remains in the hospital; he has two infections in his blood in addition to the infections in his spine. Eddie's on a lot of antibiotics--yesterday, he had a terrible allergic reaction to one of them--and has been removed from the lung transplant list until he's healthy enough to receive lungs.
Can things possibly be any harder for them??
I'm really grateful to those of you who are helping however you can--especially with meals. Those meals really are helpful--Marshall and his grandpa are eating them during the week, and Kori is grabbing leftovers for her own meals in the hospital whenever she can. Thank you, friends!
I had hoped to visit Kori and Eddie in the hospital today, but because of Moriah's pneumonia this week, I'm not allowed to be anywhere near Eddie. But the family does have some substantial needs due to Eddie's hospitalization--if you're looking for ways to help, please read on.
First, Kori is filling her car with gas every couple days because she is going to and from the hospital a couple times every day--her father is legally blind, you may recall, so she needs to be home at times to drive Marshall somewhere, and to see him, too. Gas cards would be so very helpful to them during this time if you're willing or able to send some her way (let me know if you need her address; I'm at mnwinchell (at) hotmail).
Kori's also a Dunkin Donuts girl...she's getting by on coffee with shots of espresso. As some of you know, living in the hospital gets very expensive very quickly--parents at Children's do not receive free food. So Dunks cards would also be super helpful (other food places near there are Au Bon Pain, Starbucks, Bertuccis, Bolocco, McDonald's, and CVS...yes, those of us who live in hospitals often use the hospital CVS as our own personal grocery store).
Also, you'd think that folks who stay long-term at Children's wouldn't be required to pay for parking in the hospital parking garage. This isn't the case. And when you come and go, as Kori does, you are charged each and every time (I think it's $7 or so now?). So assuming Kori pays that fee twice a day...we're talking another $100 or so she's using each week just to park her car there. I've looked into ways around this, believe me (when we lived there, I even petitioned the Family Care Center there to DO something about what I consider to be a really unfair and cruel-to-already-stressed-families practice)...but the parking garage company is not owned by the hospital, and there's nothing that can be done except to pay the fee. And sadly, Children's is the least expensive garage in the area.
So if you'd like to send money or gift cards directly to Kori, feel free to do that. Or, you can donate to the Fund and I will distribute the money to her (for example, in months that Eddie is in the hospital, Kori usually can't afford to pay her rent because of her gas/parking/food expenses, so the Fund pays the rent for her). So a donation to the Fund helps all of these needs.
Finally, Eddie's Fund in general is going to be depleted this summer--I figure I can pay their usual bills through July (through June if we begin assuming rent payments). I'm going to announce a fundraiser soon (just as soon as I can lift my head from Moriah's oxygen levels and think beyond today)...but if you want to donate to the Fund, or throw a party and invite your friends to donate to the Fund, or run a race for the Fund...please do! And thanks to those who have already donated this month.
I know this is a most overwhelming set of circumstances. Sometimes it's so overwhelming that I feel almost "stuck" with how to help or what to do...sometimes Eddie's situation seems that unbelievable, and that cruel. I'm sure you feel the same way. That's why I'm especially grateful this morning--on a morning in which I've already cried for Eddie and his pain--for all you do to love on their family and to extend the grace of God, the light of Love, to them. In the face of suffering, we are invited to ask not "Why?" but "How, then, can we live?" Thanks for answering the "how" question with your kindness and care.
With my thanks,
Melissa for Eddie's Fund
I've talked with Kori a couple times in the last couple days. Eddie remains in the hospital; he has two infections in his blood in addition to the infections in his spine. Eddie's on a lot of antibiotics--yesterday, he had a terrible allergic reaction to one of them--and has been removed from the lung transplant list until he's healthy enough to receive lungs.
Can things possibly be any harder for them??
I'm really grateful to those of you who are helping however you can--especially with meals. Those meals really are helpful--Marshall and his grandpa are eating them during the week, and Kori is grabbing leftovers for her own meals in the hospital whenever she can. Thank you, friends!
I had hoped to visit Kori and Eddie in the hospital today, but because of Moriah's pneumonia this week, I'm not allowed to be anywhere near Eddie. But the family does have some substantial needs due to Eddie's hospitalization--if you're looking for ways to help, please read on.
First, Kori is filling her car with gas every couple days because she is going to and from the hospital a couple times every day--her father is legally blind, you may recall, so she needs to be home at times to drive Marshall somewhere, and to see him, too. Gas cards would be so very helpful to them during this time if you're willing or able to send some her way (let me know if you need her address; I'm at mnwinchell (at) hotmail).
Kori's also a Dunkin Donuts girl...she's getting by on coffee with shots of espresso. As some of you know, living in the hospital gets very expensive very quickly--parents at Children's do not receive free food. So Dunks cards would also be super helpful (other food places near there are Au Bon Pain, Starbucks, Bertuccis, Bolocco, McDonald's, and CVS...yes, those of us who live in hospitals often use the hospital CVS as our own personal grocery store).
Also, you'd think that folks who stay long-term at Children's wouldn't be required to pay for parking in the hospital parking garage. This isn't the case. And when you come and go, as Kori does, you are charged each and every time (I think it's $7 or so now?). So assuming Kori pays that fee twice a day...we're talking another $100 or so she's using each week just to park her car there. I've looked into ways around this, believe me (when we lived there, I even petitioned the Family Care Center there to DO something about what I consider to be a really unfair and cruel-to-already-stressed-families practice)...but the parking garage company is not owned by the hospital, and there's nothing that can be done except to pay the fee. And sadly, Children's is the least expensive garage in the area.
So if you'd like to send money or gift cards directly to Kori, feel free to do that. Or, you can donate to the Fund and I will distribute the money to her (for example, in months that Eddie is in the hospital, Kori usually can't afford to pay her rent because of her gas/parking/food expenses, so the Fund pays the rent for her). So a donation to the Fund helps all of these needs.
Finally, Eddie's Fund in general is going to be depleted this summer--I figure I can pay their usual bills through July (through June if we begin assuming rent payments). I'm going to announce a fundraiser soon (just as soon as I can lift my head from Moriah's oxygen levels and think beyond today)...but if you want to donate to the Fund, or throw a party and invite your friends to donate to the Fund, or run a race for the Fund...please do! And thanks to those who have already donated this month.
I know this is a most overwhelming set of circumstances. Sometimes it's so overwhelming that I feel almost "stuck" with how to help or what to do...sometimes Eddie's situation seems that unbelievable, and that cruel. I'm sure you feel the same way. That's why I'm especially grateful this morning--on a morning in which I've already cried for Eddie and his pain--for all you do to love on their family and to extend the grace of God, the light of Love, to them. In the face of suffering, we are invited to ask not "Why?" but "How, then, can we live?" Thanks for answering the "how" question with your kindness and care.
With my thanks,
Melissa for Eddie's Fund
Sunday, May 19, 2013
Back in the hospital
Dear Friends of Eddie,
I'm writing today to let you know that Friday Eddie went back into the hospital with a severe infection. I know his mom, Kori, would so appreciate your prayers for them during these challenging days! Let's hope the doctors can determine the kind of infection he has, treat it well, and keep Eddie on the lung transplant list. And most importantly, let's pray for strength, courage, and peace for their family.
Thanks for continuing to care for Eddie.
Melissa
I'm writing today to let you know that Friday Eddie went back into the hospital with a severe infection. I know his mom, Kori, would so appreciate your prayers for them during these challenging days! Let's hope the doctors can determine the kind of infection he has, treat it well, and keep Eddie on the lung transplant list. And most importantly, let's pray for strength, courage, and peace for their family.
Thanks for continuing to care for Eddie.
Melissa
Monday, May 6, 2013
May Day
Somehow, it's May already.
Is anyone else having that, "Where did April go?" feeling?
Eddie and his mom, Kori, certainly are. Eddie spent a week in the hospital in April, and hasn't been well since. He's requiring new kinds of care, and new kinds of pain management with some pretty heavy duty drugs. Kori told me that they were in Boston FOUR TIMES last week (!) for appointments, some of them lasting all day and well into the evening hours. How she manages to keep up with their life--the medical appointments, the therapies, the tutors, the nursing staff, and her other son Marshall's schooling and life--I really don't know.
Except I know that lots of you have continued to provide support to the family, even in the racing-by month of April. Kori and I are so grateful to you. Handfuls of you continue to bring meals to their house every Monday, Wednesday, or Friday evening; Kori often spreads these meals out throughout their week. (And if you'd like to join our amazing team of meal folks, please use the link on the right to our Helping Hands calendar--many of us who don't live near Kori and her family have food delivered to them instead of delivering it ourselves, so all it takes is a phone call and $20 on your credit card). Some of you have continued to donate to the Fund; a few of you are monthly supporters, and your $20 or $50 a month goes a long way to helping us help Eddie's family pay their bills and keep up with their medical expenses.
So it's May. A new month that will hopefully usher in a new season--summer, yes, but also we hope, new lungs for Eddie. Thanks for joining with us as we wait with his family for his transplant and as we do all we can to keep them encouraged (and fed, and cared for) during these months of waiting. All of your efforts are noticed and so appreciated.
Is anyone else having that, "Where did April go?" feeling?
Eddie and his mom, Kori, certainly are. Eddie spent a week in the hospital in April, and hasn't been well since. He's requiring new kinds of care, and new kinds of pain management with some pretty heavy duty drugs. Kori told me that they were in Boston FOUR TIMES last week (!) for appointments, some of them lasting all day and well into the evening hours. How she manages to keep up with their life--the medical appointments, the therapies, the tutors, the nursing staff, and her other son Marshall's schooling and life--I really don't know.
Except I know that lots of you have continued to provide support to the family, even in the racing-by month of April. Kori and I are so grateful to you. Handfuls of you continue to bring meals to their house every Monday, Wednesday, or Friday evening; Kori often spreads these meals out throughout their week. (And if you'd like to join our amazing team of meal folks, please use the link on the right to our Helping Hands calendar--many of us who don't live near Kori and her family have food delivered to them instead of delivering it ourselves, so all it takes is a phone call and $20 on your credit card). Some of you have continued to donate to the Fund; a few of you are monthly supporters, and your $20 or $50 a month goes a long way to helping us help Eddie's family pay their bills and keep up with their medical expenses.
So it's May. A new month that will hopefully usher in a new season--summer, yes, but also we hope, new lungs for Eddie. Thanks for joining with us as we wait with his family for his transplant and as we do all we can to keep them encouraged (and fed, and cared for) during these months of waiting. All of your efforts are noticed and so appreciated.
Tuesday, March 19, 2013
Thanks for Eddie's birthday wishes!
Eddie and his family were so, so touched by all the cards that were sent his way last week! Here is just one of the doors he decorated with some of your goodness (and as you can see, there were so many other cards still needing to be hung, too). Thank you, friends!
Thursday, March 14, 2013
Happy birthday, Eddie!
Dear Eddie:
Today is your birthday. You should be getting lots of cards today; we invited our friends to fill your mailbox. Moriah's class at school and at daycare sent cards to you, too, so some of these cards will be made by little hands, full of scribbles and stickers and glitter and those sorts of things.
You were about that age when I first met you, weren't you? I'm sure your mom has told you the story--how she and I met on an elevator in Children's Hospital as strangers, only later to be reconnected through Dr. Lehmann as likely friends for each other. I wasn't allowed to meet you in those early months; like our son, you were sequestered to your room, and I could only wave to you from the hallway window, or make funny faces to you, or give your mom pictures Orilus and I had colored for you in our own isolated room. You were 6 years old then. Just barely 6, and you had been diagnosed with aplastic anemia at five years old. By the time you reached the bone marrow transplant floor at Children's and we met you, you had already spent 6 months in another Boston hospital.
You are 13 years old today. Unlike lots of kids your age, Eddie, you have already learned one of life's hardest lessons: Life simply doesn't go the way we expect it will. Your mom, your grandparents, your aunts and uncles, your brother, and your friends--we all wanted a healthy life for you, Eddie. We all had high hopes that your bone marrow transplant would be a huge success. And you did, too.
Life hasn't turned out the way we all had hoped.
But on your 13th birthday, I hope you will have some time to learn one of life's other great lessons: Life is a journey about discovering how much you are loved. And you really are, Eddie. From the Boston Celtics to the Lego company in Europe to the high school in your hometown, your life has touched people, and they care about you. Hundreds of people have supported you and your family through Eddie's Fund. Hopefully this week your mailbox is jammed full as proof of that. Our family loves you; little Moriah prays for you every night, and often spontaneously throughout the day: "Bless Eddie. Boo-boo! Amen!" Your family loves you. And that mom of yours--well, she loves you more consistently, more doggedly, more committedly, than any mom I know. You are a deeply loved boy, Eddie.
And sometimes, when life doesn't go the way we want it to, or the way we had hoped it would...love is what we have. It's life's most precious gift, and it comes to us whether we are healthy, or sick, or young, or old, whether we are rich and famous or a brave young man fighting for his health every day in a hospital or in his living room.
On your 13th birthday, Eddie, feel the love. This morning I am sending you mine with all my prayers for your health. And my greatest prayer for you is this: May you become a person who knows he is loved--by God, and by us all.
Happy birthday, Eddie.
Love,
Melissa
Today is your birthday. You should be getting lots of cards today; we invited our friends to fill your mailbox. Moriah's class at school and at daycare sent cards to you, too, so some of these cards will be made by little hands, full of scribbles and stickers and glitter and those sorts of things.
You were about that age when I first met you, weren't you? I'm sure your mom has told you the story--how she and I met on an elevator in Children's Hospital as strangers, only later to be reconnected through Dr. Lehmann as likely friends for each other. I wasn't allowed to meet you in those early months; like our son, you were sequestered to your room, and I could only wave to you from the hallway window, or make funny faces to you, or give your mom pictures Orilus and I had colored for you in our own isolated room. You were 6 years old then. Just barely 6, and you had been diagnosed with aplastic anemia at five years old. By the time you reached the bone marrow transplant floor at Children's and we met you, you had already spent 6 months in another Boston hospital.
You are 13 years old today. Unlike lots of kids your age, Eddie, you have already learned one of life's hardest lessons: Life simply doesn't go the way we expect it will. Your mom, your grandparents, your aunts and uncles, your brother, and your friends--we all wanted a healthy life for you, Eddie. We all had high hopes that your bone marrow transplant would be a huge success. And you did, too.
Life hasn't turned out the way we all had hoped.
But on your 13th birthday, I hope you will have some time to learn one of life's other great lessons: Life is a journey about discovering how much you are loved. And you really are, Eddie. From the Boston Celtics to the Lego company in Europe to the high school in your hometown, your life has touched people, and they care about you. Hundreds of people have supported you and your family through Eddie's Fund. Hopefully this week your mailbox is jammed full as proof of that. Our family loves you; little Moriah prays for you every night, and often spontaneously throughout the day: "Bless Eddie. Boo-boo! Amen!" Your family loves you. And that mom of yours--well, she loves you more consistently, more doggedly, more committedly, than any mom I know. You are a deeply loved boy, Eddie.
And sometimes, when life doesn't go the way we want it to, or the way we had hoped it would...love is what we have. It's life's most precious gift, and it comes to us whether we are healthy, or sick, or young, or old, whether we are rich and famous or a brave young man fighting for his health every day in a hospital or in his living room.
On your 13th birthday, Eddie, feel the love. This morning I am sending you mine with all my prayers for your health. And my greatest prayer for you is this: May you become a person who knows he is loved--by God, and by us all.
Happy birthday, Eddie.
Love,
Melissa
Thursday, February 28, 2013
Help us fill Eddie's mailbox!
Dear Friends,
Eddie's 13th birthday is just 14 days away!
That's right, on March 14th, Eddie turns 13 and becomes a teenager.
We would love, love to fill Eddie's box with birthday cards! Will you help us?
Please email me for his home address if you don't already have it (we try to be as protective of Eddie's personal information as much as we can, so please don't share the address with folks you don't know very well)...gather your friends, your classmates at school, your colleagues...host a card-making party...make a trip to CVS...let's FILL Eddie's mailbox with happy birthday wishes.
Thanks for multiplying the celebration with us!
Melissa
Manager, Eddie's Fund
mnwinchell at hotmail
Eddie showing off his muscles last week while in the hospital:
Eddie's 13th birthday is just 14 days away!
That's right, on March 14th, Eddie turns 13 and becomes a teenager.
We would love, love to fill Eddie's box with birthday cards! Will you help us?
Please email me for his home address if you don't already have it (we try to be as protective of Eddie's personal information as much as we can, so please don't share the address with folks you don't know very well)...gather your friends, your classmates at school, your colleagues...host a card-making party...make a trip to CVS...let's FILL Eddie's mailbox with happy birthday wishes.
Thanks for multiplying the celebration with us!
Melissa
Manager, Eddie's Fund
mnwinchell at hotmail
Eddie showing off his muscles last week while in the hospital:
Waiting for lungs...
Dear Friends:
Eddie has returned home again after another week-long stay in a Boston hospital. He developed a serious lung infection and was admitted to the ICU. Thankfully, the infection is under control, Eddie has returned home, and the nursing care Eddie is now receiving seems more consistent and helpful than before.
It's very hard for me to express how grateful I am to those of you who continue to make time each month to bring (or send) them a meal (if you'd like to get involved, see the link to our Helping Hands website on the right). Kori told me that she continues to stretch these as far as she can, sometimes saving leftovers in the freezer for future dinners. Especially in these really difficult last couple weeks, they have needed again our support, and you have been there. Over and over Kori continues to reiterate that she doesn't know what she'd do without the support of the folks involved with Eddie's Fund.
Two days ago when we talked by phone, she also told me how much she's enjoying meeting the folks who bring meals there. I know some of you have gone the extra mile--making home cooked food, bringing groceries, surprising her with a cup of coffee, staying for some time to visit with her. What can I say for all the kindnesses you have shown except...thank you. Kori's life is too consumed with stressed you and I can't even fathom; having these adult conversations and interactions--however brief--are so meaningful to her. Kori and I both feel that in all the difficulty of their lives in these last years, these gifts of kindness are like bright candles that light her path just enough to keep her walking. Whatever else you do on this earth, you can know you have been part of a very small and humble effort to love and encourage a really great family.
Please know how grateful I continue to be for your support for our friends. Over and over Kori keeps saying that she doesn't know how I know so many kind and wonderful people; you all are a gift of goodness to me, and now to Eddie and his family, and I'm grateful to be sharing you with them.
And thanks for continuing to pray for strength, wisdom, and healing for Eddie and his family as they wait for his new pair of lungs. These are scary--and difficult--months.
I love you all.
Melissa for Eddie's Fund
Eddie has returned home again after another week-long stay in a Boston hospital. He developed a serious lung infection and was admitted to the ICU. Thankfully, the infection is under control, Eddie has returned home, and the nursing care Eddie is now receiving seems more consistent and helpful than before.
It's very hard for me to express how grateful I am to those of you who continue to make time each month to bring (or send) them a meal (if you'd like to get involved, see the link to our Helping Hands website on the right). Kori told me that she continues to stretch these as far as she can, sometimes saving leftovers in the freezer for future dinners. Especially in these really difficult last couple weeks, they have needed again our support, and you have been there. Over and over Kori continues to reiterate that she doesn't know what she'd do without the support of the folks involved with Eddie's Fund.
Two days ago when we talked by phone, she also told me how much she's enjoying meeting the folks who bring meals there. I know some of you have gone the extra mile--making home cooked food, bringing groceries, surprising her with a cup of coffee, staying for some time to visit with her. What can I say for all the kindnesses you have shown except...thank you. Kori's life is too consumed with stressed you and I can't even fathom; having these adult conversations and interactions--however brief--are so meaningful to her. Kori and I both feel that in all the difficulty of their lives in these last years, these gifts of kindness are like bright candles that light her path just enough to keep her walking. Whatever else you do on this earth, you can know you have been part of a very small and humble effort to love and encourage a really great family.
Please know how grateful I continue to be for your support for our friends. Over and over Kori keeps saying that she doesn't know how I know so many kind and wonderful people; you all are a gift of goodness to me, and now to Eddie and his family, and I'm grateful to be sharing you with them.
And thanks for continuing to pray for strength, wisdom, and healing for Eddie and his family as they wait for his new pair of lungs. These are scary--and difficult--months.
I love you all.
Melissa for Eddie's Fund
Monday, February 4, 2013
Valentine's spirit for Eddie
(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
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
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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