Farewell to Eddie's Fund

Dear Friends of Eddie's Fund,

This morning I will write the final three checks from Eddie's Fund; when those checks clear, I will close the account and Fund entirely. (Below, the photo of the many-years-old Eddie's Fund checkbook I've carried with me through three house moves since Eddie's Fund began)

On the one hand, this is a sad day, because despite so many of our hopes to the contrary--that one day, Eddie's family would not need the Fund because he would be healthy and his family would be resuming a hospital-free life--Eddie is no longer with us. In August, Kori will mark the six-month anniversary of Eddie's passing; writing the final checks today means the Fund is not necessary in the least desirable of ways. It's not fair. It sucks. It is a tragedy in every way. And while Kori and Marshall grieve, so many of us continue to wonder what sense can be made of so much suffering to so innocent a boy.

On the other hand, this is also a day for celebrating. I will sign checks this morning through tears, yes, but many of those tears will be tears of gratitude, and even joy. I am grateful that Eddie's life brought me a friend as resilient, as hilarious, as caring, and as close as Kori. I am amazed when I think about the hundreds of people who have been connected through Eddie's Fund--at first, my family and some close friends, and then some folks who had never even met Kori, and then folks I've never even met, and former students, and teenagers, and little kids having birthday parties and hosting small fundraisers and collecting donations. A print shop and a mural artist. A bone marrow drive at one of our fundraisers which resulted in a good friend actually donating bone marrow to a stranger in the hopes of saving a life. The webs of connection--beautiful, silky threads of love and kindness--have been felt by so many of us. These threads have dared to glisten with light on really, really dark days; they have taught us that instead of asking, "Why Eddie?" we might better ask, "How?" How can we help? How can we love better? How, then, do we all live, now that we are so aware how short and precious is this life?

Today I'll cry because since April of 2008, when I wrote the first official check from Eddie's Fund, you have donated more than $42,000 to Eddie and his family. The donations came by the tens of dollars, and sometimes by the hundreds, though not as often. This means many, many of you gave what you could and more than once, trusting that your gifts--no matter how small--could be a drop in a greater ocean. And they were. You have kept Kori's car on the road for their trips back and forth to Jimmy's Fund and Children's Hospital. You have paid medical expenses, made sure their apartment had light and heat, and purchased food for them when their cupboards were bare from too many weeks in a hospital room. In every tangible way--delivering meals, shoveling snow, giving them an EasyPass, sending cards and gifts--you have been LOVE to them. How can I wallow in grief today, in the light of so many, and so real, and such beautiful, gifts?

Thank you, dear friends. You have loved well. I couldn't be prouder to have loved alongside you during these years.

And thank you especially to my dear, dear friend Kori. You have been one of my life's greatest teachers, providing me as you have with a vision of loving, grieving, dying, and living, a view I cherish. I have tried my best to use that vista to bring you light, hope, and love, and despite my failings at doing so, you love me still. What you need to know today is that I love you, I am amazed by you, and I will continue to watch trashy TV shows as long as I have you to help me make fun of them. Thanks for being a darkly hilarious, seriously big-hearted, super-mom friend. Here's to standing on hospital furniture, swearing at hospital TVs, staring at brick walls, eating when we're stressed, scavenging for pillows, yelling at nurses to GET OUT, crying at Bertuccis, living in yoga pants, paying too much for parking, visiting Au Bon Pain in the wee hours of a morning for "second supper," feeding coins to hospital laundromats, losing our sanity while isolated, holding puke buckets, counting blood cells, and surviving it all with a friendship we couldn't possibly explain.

And here's to all of us, Eddie's Fund friends! May the connection and love we experienced through the Fund endure as a tribute to Eddie's life; may we find some new family, some new suffering, some new hospital room, into which to bring light.

On behalf of Kori and her amazing family, thank you. A million times, thank you. My heart is full, and I know Kori's is, too.

Love Remains.

With love,
Melissa Winchell, writing one last time for Eddie's Fund

Change in Plans

Dear Supporters of Eddie's Fund,

After talking with Kori today, we've decided to postpone our Eddie's Fund celebration, originally scheduled for July 26, indefinitely. Kori begins a new job next week and both she and Marshall continue to be sick off and on this month. It's just a lot to try to add an event to a month in which so much is happening for them.

Thank you for your understanding, and as always, your support. We can cheer Kori on in other ways this month as she makes her return to the working world! I am so happy for her.

Please remember that the Fund will not accept donations after July 30th. If you are a monthly contributor to Eddie's Fund, you will want to stop your support next month. On August 1st, all funds remaining in the account will go directly to Kori to help her continue to get up on her feet. I anticipate that this will be about $1,000. If you'd like to leave the family with more remaining funds, please feel free to donate one last time before July 30th.

I hope you'll continue to support Kori and Marshall with your friendship and love as they continue to grieve while also working out a new life together. I am speechless--really, so overwhelmed--when I think about the outpouring of love you all have given through the Fund in these last 7 years. Thank you, dear friends.

With admiration,
Melissa

Update & Eddie's Fund Party Invite

Dear Friends,

I know many of you now follow Kori personally on Facebook, so I often neglect to write here, wanting for Kori mostly to be able to speak for her own experience, which is hard and personal in so many ways.

As Kori moves forward--she hopes to begin a new job next week--we continue to collect any final donations for the Fund, which will close on August 1. I've been able to meet with Kori nearly every week since Eddie's passing--last week, we met at the hospitals, and I was witness again to Kori's bravery as she faced down the trauma of the day Eddie died, and triumphed. She is extraordinary, and I'm so grateful to know her, and to have shared our friendship with so many of you.

Eddie's Fund has been paying many bills for Kori in these last months, and we will do so through August 1st to allow her to get on her feet as she transitions into a full-time job (which one of our own Eddie's Fund supporters helped her to find--you guys are amazing!). We've even been able to splurge on some extras to encourage Kori and Marshall toward health--thanks to those of you who consulted with me on these expenditures--including a really cool (and, we hope, healing) camp experience for Marshall this summer.

I am hosting an Eddie's Fund party in my backyard as a final gathering of all of us--a way for us to give Kori hugs again and to mark a closing of a season in her life, as we send her on her way to financial independence with our love and encouragement. Wouldn't it be great to all be together to celebrate Eddie's life and the way he has connected us all? All of you who have supported Kori and her family through Eddie's Fund are invited to attend on Saturday, July 26 at noon. Please email me for details at mnwinchell (at) hotmail.

Happy summer, dear friends! Thanks for all you continue to do to share your life and love with Kori and Marshall. I appreciate you!

Happy Mother's Day

Wishing a very happy Mother's Day to all the moms who have supported Eddie's Fund in some way!

And thinking today of my dear friend, Kori, and praying that you will somehow, somehow have the strength and courage to get through this day.

Eddie loved you so well, my friend, and today I think his love was like a seed...destined to grow and multiply your circles of friends and folks who love you. All of us who care for you cannot replace Eddie or his love, but we are an extension of it, brought together by him for you.

Happy Mother's Day, my friend.

Our final fundraiser

Dear Friends,

I met Kori for lunch today; we're trying to spend some of our Fridays together when we can. She continues to be amazed--and so appreciative--of all the funds we've raised, and all the support she's received from you.

Before Eddie's lung transplant, I had just kicked off a spring fundraiser via Tiny Tags for Eddie's Fund, and I've decided to resume the fundraiser now that the wake and funeral are behind us. In the last week, your donations have made it possible for the Fund to pay just over $2,000 in funeral costs and the family's monthly expenses, and there is still a bit over $6,000 in the Fund. In seven years, Eddie's Fund has never overflowed to such an extent; your generosity is amazing.

Still, I'm grateful for Tiny Tags for offering this fundraiser to us, and more than that, I want to do all I can in these last 6 months of the Fund (I will close the account on August 1 and give Kori all of the remaining funds at that time) to see Kori through this time of grief and help her get back on her feet. This will be the Fund's last fundraiser.

I love this fundraiser because it is a win-win: you receive a gorgeous gift, and Eddie's family receives the gift of support as they grieve and heal. 20% of every purchase you make will benefit Eddie's Fund; visit www.tinytags.com and enter "Eddie's Fund" as the charity code at checkout.

Please, and thank you.

Your generosity is overwhelming

Dear Friends,

It has been now a little over a week since Eddie passed. And I want you all to know today how much you have done to support Eddie's Fund in that short time. In total, you and your friends have donated just over $6,800. Your donations--and the fundraising efforts of Eddie and Marshall's elementary school--are making it possible to completely pay for the funeral expenses and burial costs. And you are also helping the Fund to give Kori some additional support for the next 6 months as she grieves and begins to put together the meaningful and happy life Eddie would have wanted for her.

Today I'm feeling sad again, remembering Eddie and feeling the pain of the loss for his family and for all of us. But more overwhelming than the grief is your generosity, your love, your kindness, your compassion, and your care.

Thank you, dear friends, for loving so very well this week. May the love Kori and Eddie shared continue to live on through us.

With my thanks,
Melissa

Eulogy at Eddie's Funeral Mass

Thank you again, friends, for the love you have expressed to Eddie's family and to me this week. I was privileged to give the eulogy at Eddie's Funeral Mass yesterday afternoon. I know many of you were unable to attend, and I want to share my thoughts with you. May we all choose to learn from Eddie's passing what he experienced throughout his life--when we suffer, when we hurt, love remains.


LOVE REMAINS
Funeral Mass of Eddie Rodriguez
Eulogy by Melissa Winchell
February 19, 2014

Kori,

You and I met in the strangest of ways. In fact, “strange” is a really good word for it, because we were two strangers on an elevator in Children’s Hospital when we started talking across the crowd. I remember riding to the basement with you and walking you to the place where you could obtain your hospital ID card—oh friend, what I wouldn’t give for both of us to know so much less about that place!—and leaving you there saying, “I really do hope to see you again.” Later that day, because of a connection through our doctor who recommended that I reach out to the other Mass General family on the bone marrow transplant floor, I slipped a silly junior-high-ish note under the door to Eddie’s room (one of those, “I know you don’t know me but can we be friends?” letters). And I still remember the moment when I opened my door to find you—the friendly and kind woman from the elevator—standing there with my note in your hand. “You’re Rodriguez?!” I remember shrieking, as if I had met a long lost friend. You were. And truly, friend, we could not have imagined that day how our nearly eight-year friendship would feel, and become, destiny.

Kori, there is something very important I want to tell you today, and to say here in front of your family and friends: I think, that when many people look at our friendship, they think that you are very lucky to have me as your friend. Because of Eddie’s Fund and because of your difficult situation these last eight years, they probably assume that I am the giver in this relationship, and that you have benefited more from me than I from you.

They are wrong. In truth, I have received more from you than you will ever know. Befriending you and Eddie has changed my life more than any other friendship I’ve had. For eight years I have been what our Catholic and Protestant friends might call a witness, a privileged witness. I have been witness to your grit and determination, the phone calls during which you’d tell me you chewed out a nurse or doctor and I cheered you along in your advocacy. I have been witness to your silliness and laughter, the way you would laugh with me until we cried, even while sitting bedside with Eddie in a hospital room. I have been witness to your inner strength, your wisdom, your resolve, and your unending desire to make other people’s lives—even when you were so consumed with Eddie’s—happier and healthier. And most of all, my dear sweet friend, I have been privileged to witness the tender, fierce, encompassing, beautiful love you have for Eddie, and he for you.

Truly, Kori, I have never seen a mother and son as connected as you and Eddie have been in these eight years. I have one vivid memory of watching you both during a visit with you in the ICU; as we talked, you pushed buttons and suctioned tubes and adjusted pillows and smeared lotion. What struck me was not that you did those things—I have done them, too, and any mother in our position would do them—but that every time Eddie so much as grunted, you knew, you just knew, what he was asking of you. I remember very clearly that I suddenly felt like I was a complete stranger, watching from the outside something so intimate, so private, so deeply loving. I wasn’t sure I should have been there to witness such a thing, but I didn’t want to leave. I felt something shift in me that day, as I watched the two of you—an opening in my soul, a desire to love as you both did, without pretense or reserve, with all the risk that loving in this mortal world of ours entails.

I am still learning this from you, Kori—how to love. You are a sage, a master, at it; Eddie, too, was in his love for you a wise, loving old man living in a teenager’s body. Eddie worried as much for you as you did for him; it was Eddie who hoped for your future and this year pushed you out the door each week to your college classes. He thanked you often, telling you again and again what a wonderful mom you were to him, and how much he loved and needed you. I have never seen a son—especially a thirteen-year old son—love his mom the way Eddie loved you. Your spirits were so connected, and are still.

On Thursday, as Eddie passed, I was with you and was again a witness, a very privileged witness, to the love between you. As I watched you love, even when the pain felt like it would kill you, I just kept praying that somehow, somehow I would have the courage and the grace to love as beautifully, as wholly, as completely, as unreservedly, as you have. You keep teaching me, friend: Love Remains. Love, as Saint Paul would say, never, ever fails.

And as your friend, I want you to know that I have all the confidence in the world that you are going to navigate through this grief. I know this is true because you have already chosen so very wisely—you, and Eddie, chose love. And even now, you have in greatest measure that which lasts—love. I have seen you access love on dark days of suffering, lean into love when you are falling, breathe in love when you are not sure you can go on. You are well practiced at loving, my friend. And nothing, nothing separates us from love—Saint Paul gives us the reassuring word that not even death can separate us. Nothing can. Because love is all around us. It is here. It is in us. It is in you. Love remains. Love won’t fail you.

You keep saying that Eddie is your angel. In the Scriptures, angels, when they appear in people’s lives, always say the same thing. They say, “Do not be afraid.” And so, my friend, I whisper what Eddie’s spirit and love are whispering to you today: “Do not be afraid.” Love has not left you. Love is here. Love remains. And even if you cannot quite believe it today, I and all of your friends and family gathered here will believe it for you: Love is going to see you through.

I love you the world.

Thank you!

Together you have donated over $5,500 to Eddie's Fund since Friday. Thank you, friends, for standing with Eddie's mom and brother this week during their terrible loss. I am so grateful to you.

Eddie's funeral

Eddie's funeral will be Wednesday from 10-12 at St. Anne's (290 Jefferson Avenue) in Salem. Please come if you are able and be a part of a community of love and support for Eddie's family.

How you can help

Dear Friends,

So many are asking how they can help Kori, especially monetarily, during this week of loss. Thank you, friends, for your big hearts!

Funeral expenses are going to be a bit over $10,000, and this does not include the cost of a headstone. Kori is receiving about $1500 of support from the hospital and MassHealth; in addition, Eddie and Marshall's school has begun a fund to help with funeral and headstone costs.

I'd love to see the Fund flooded with money this week so that we can accomplish two goals: first, to cover any additional funeral and burial costs Kori doesn't receive from other sources, and also, to support Kori for the next 6 months or so as she takes the time she needs to grieve and figure out next steps.

The truth is, Kori is going to need MORE, not less, support from the Fund this month and in the months that follow. Thanks to Congress (I promise not to get too political here), some of the supports she was receiving are cut in half. She's not asking for money, but in talking with her this week, I've made it my goal to try to pay the following bills for her, if we can, for the next 6 months: her car payment, her rent, and supplemental money for groceries. In total, we need about $700 a month to pay these expenses, or $4200 total, plus any funeral/headstone costs that she doesn't receive from elsewhere (I think we should plan to try to raise another $5 - 10,000), for a total of $9200 to $14200 in the Fund.

The Fund currently has $2100 in it (thank you, dear friends!). Many of you gave yesterday, and you can be sure every cent is going to be used to help Kori through these funeral expenses, and the needs she has for the next handful of months.

We'll also continue with our Tiny Tags fundraiser; after next week, I'll begin re-posting about that.

But for those of you who want to give directly, who have friends who want to give, who have tax returns you don't really need...I invite you to work with us, these last 6 months, to do all we can to see Kori through the grief of the loss of Eddie. To get her on her feet. To love her. Whatever funds we have remaining after six months we will give to Kori, and close the account and this chapter of financial support (she'll be the first to tell you she can't wait to work again) for her and for all of us.

Being Kori's friend has been one of the greatest gifts of my life; however, widening her circles of love to include my friends (and so many now I haven't even met) has been a privilege, and a grace. It has been a "ripple effect" in my life so beautiful I can't possibly thank you each enough.

Thank you for all you're doing to love on Kori and her son, Marshall, in their grieving this week. When I have them, I will post funeral details (most likely, Wednesday morning)and hope to meet and hug many of you there.

Much love, and many thanks,
Melissa for Eddie's Fund

Such sad news

Dear Friends,

As some of you have heard, our friend Eddie earned his angel's wings last night. After receiving his new lungs, Eddie fought for his new life bravely and well until his body could not fight anymore. It was a hard day that was nonetheless touched by the love so many had for Eddie, and he for them.

I'll be posting soon about what the family needs--for now, I'm working with the hospital to gather funeral expenses. And, as Kori transitions to a new life, I want Eddie's Fund to be able to support her and give her some time to make that transition. When I know more about what that means, I'll let you know, and am grateful already to you who have given, and will give.

In the meantime, I want, out of respect for the family's privacy, to hold close my memories of the last 36 hours. I'd like to say here how grateful I am to the family for welcoming me into their spaces of loving and grieving yesterday; I am humbled, so humbled, to have been with them and have so much respect and love for Eddie's family. Please know how much comfort it brought to Kori--and to me--to know that so many of you knew of his transplant, were thinking of him yesterday, and holding on to hope with us. Thank you for grieving with them now, and for walking so courageously and generously with Eddie and his family during these years. As Kori said to me, we are all now responsible for carrying Eddie's legacy with us. May today be marked by the compassion, courage, and spunk Eddie would want for us.

Thank you again for being a community of love to Eddie and his family,
Melissa
www.eddiesfund.blogspot.com

Buy a necklace...give to Eddie's Fund

Please visit Tiny Tags today to make your purchase on Eddie's behalf.

Holding on to hope

Dear Eddie's Fund supporters,

Many of you have already seen the photo of Eddie Kori posted this morning on her own Facebook wall; I'm including it here. They're on their way into Boston today for another full day of appointments. As you can tell from the photo, Eddie isn't well--he's sleeping much of the time--and the family continues to wait for lungs for him.

There's added obstacles on this front; because of Eddie's age, the transplant Board won't allow Eddie to receive pediatric lungs, even though those are the only ones that will fit his body. Eddie's doctors have appealed and Eddie and his family are waiting to hear whether they will win their appeal.

I talked with Kori last night--as always, she remains a person full of light and love. And hope. Always hope.

Thanks for supporting, praying, and sharing your love and hope with Eddie and his family along with us. We appreciate you.

Melissa

Thank you, friends!

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

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

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

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

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.

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!

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.