This week, January 24th, marks the eight year anniversary of the loss of our eight month old son Josiah, who died of a rare heart defect called HLHS. During the time immediately following we asked God the tough questions. "Why me? Why do you let this happen to our family? Why don't you pick on someone else instead?"



However, as time has passed, I find I am asking God different types of questions. The questions eight years removed now sound like: "I wonder who would benefit from hearing our story? Who do I know that has suffered loss recently? What can I share that would give hope for those in crisis?" Here is what I'd like to share today.



Celebrate the Little things

Throughout Josiah's hospitalization, our family learned to celebrate the little things. His medical condition was always going to be difficult, and little victories could lead to great ones. I believe celebration has become a characteristic the Wilson family ethos. Keeping that in mind, here are a four things to celebrate eight years after losing our precious little boy.



1. A little grief lasts a long time

Grief has a way of sneaking up on a person when they least expect it. While this can take a person off-guard, most people see it as a blessing, because it means that we haven't forgotten about the person we love. The pain is real, but it reminds us once again of the depth of the relationship.



2. A little help makes a big difference

Let's face it. Very few of us are good about seeking help from others when we need it. But at some level all of us need a helping hand, or a shoulder to cry on from time to time. It is important to remember that when interacting with your circle of relationships. Help someone today, and have an impact for many tomorrows.



3. A little trauma does every marriage good

This one is tough to acknowledge, but it is as true as anything else I might list here. The day(s) our son needed open heart surgery, or even day he died was not as traumatic to our relationship, as the months of emptiness that followed. Still, looking back from on the other side, surviving those emotion-less moments has made our desire and passion for one another more real than ever.



4. A little hope illuminates a great distance

Josiah lived his entire eight months on this planet somewhere on the bubble between dire emergency and urgent critical care. As his parents, this could feel incredibly defeating. However, a little good news, a tiny ray of hope was enough to sustain us for days and days. My good news, my ray of hope in this life is found in Jesus. "We have this hope as an anchor for the soul, firm and secure." Heb 6:19



What are the little things you need to celebrate today?

I was an emotional mess the past Sunday at Randall Church. It didn't help that I've been fighting a head cold and sinus infection for weeks, but oh boy, did I do some ugly crying on Sunday morning! This Sunday was a beautiful expression of the church being the Church. We got to witness a body of believers coming around some very specific families in our church who needed to be brought before the King as their needs are great.  I love when our church prays together! It is beautiful!  And then we were given the opportunity to meet a very practical financial need for one of those families.

On a very personal note it was a "full circle" moment for me.  A moment when I got to see God's word come alive and his promises ring true. Years ago, Milo and I were taught a giving principle out of the scriptures.  In 2 Cor 8:14 God's word says, "At the present time your plenty will supply what they need, so that in turn their plenty will supply what you need."  We have allowed this principle to guide our giving since we were taught it.  To give out of our abundance, trusting that God, through others, will provide for us in our time of need.  So why was this moment on Sunday so emotional for me?

Eight years ago, to this very week, we had a church come around us and give out of their abundance in our time of need.  And now, here I was sitting in the pew with the opportunity to give out my abundance to a family in a similar situation with medical expenses and travel expenses mounting.  To be reminded of what others in the church had done for us years before and now to be able to somehow return a portion of that was an emotional role reversal and I knew exactly what God was asking of me.

God made it very clear to me on Sunday that I was not giving to this family but returning a gift back to God, and I quickly became overwhelmed.  You see, in that moment I received the privilege and honor of being able to take part in the giving. It was hard yet beautiful to feel the tension of wanting to hang onto my abundance but simultaneously realizing just how much I have been given and knowing it was time to let go.  That tension is real, but what good is to have material possessions if we cannot hold them loosely enough that when God says "let go", we can obey as an act of worship.

Pastor Bryan taught this Sunday on the fall of mankind in the Garden of Eden.  He pointed out the image of the tree of life (which God intended for us) and the tree of the knowledge of good and evil. When Adam and Eve ate of that tree sin, pain, hurt, cancer, injustice, death and darkness entered our world.  He spoke about how we as believers are living between those two trees now.

There is great tension between those trees.  But as I watched our congregation pray for and give to these families on Sunday I could see more clearly the tree of life, what God had intended. In that moment we were a body of believers heading toward the tree of life and bringing restoration to the brokenness that is in this world.  This, is a church that I am proud to be a part of!

May we continue to be people who wrestle with the tension of living between the trees and a people who desperately seek to do our part to repair the brokenness in this world and head toward the tree of life.

- Erin

Today marks seven years. Seven years since we lost our beautiful boy Josiah Nathaniel Wilson to a congenital heart defect. It is amazing how time marches forward whether we are ready to do so or not. Grief shapes us. Loss changes us. But it has been my experience that God sustains us.

Grief shapes us. There is no question that at the age of 35, no other event has shaped me in the way that losing my son did seven years ago. Grief came between my wife and I where nothing and nobody else has ever been able to do so. Grief connected me to a fraternity I never asked to be a part of. A fraternity in our case specifically of parents who outlive their children. This isn't what we wanted. 

Loss changes us. I walk through hospitals differently now. I'm reminded of the regular faces of security guards, cleaning staff, hospitality teams and of course; doctors and nurses. The faces are different now, but familiarity still exists. I find myself leaning in and listening if I meet someone at a coffee shop with a family member who is ill, or a friend who recently passed. I've grown a desire to listen intently, and honor someone's story with my attention. This isn't who I used to be.

God sustains us. Although grief gave our marriage a rough "shake" God's love has brought us togetherness that we would never have experienced without the pain. While loss has given us some battle scars, we have found our story to be an on-ramp to meaningful conversations with many different people, from all walks of life, and births hope through the Gospel for living another day. 

While a twinge of guilt creeps in when I realize I haven't thought of him as often, or when I realize on days like today that the memories aren't as vivid as they used to be, I can still smile. Josiah's legacy lives in me. His half-a-heart still beats in my chest. I might be the only one to see his picture on my wall every morning, but his imprint on my life can be seen by everyone.

 I love you Josiah.
 Daddy.

One of the things I count as a blessing that has come out of our journey through Josiah's death is my souls capacity for empathy.  It was something that was there to a small degree before his death but it has certainly grown immensely.  I am grateful that my heart now hurts for others more easily, that I can sense and feel someones pain more readily, that I can sympathize with someones suffering no matter how different from mine.  I feel like I am a better person. Hopefully a better friend, a better wife and a better mom because of it.  And I now I wouldn't have grown in this way with out the experience of losing Josiah.

But somedays that empathy overwhelms me, even consumes me. It can be so heavy on my heart that it makes it hard to breath.  This week an acquaintance of mine ( a women that Milo and I went to high school with) lost her 11year old son when he was struck by a car.  I have not spoken to this woman since high school.  I had never met her son.  But my heart is breaking for her.  I check on her through facebook a million times a day.  I guess I want to make sure she's okay and that she's got people around her.  I search through comments in an attempt to protect her and make sure people aren't saying harmful things (even though they don't realize it).  Those days just after losing Josiah were so hard and it just breaks my heart to know that someone else is feeling that way.  It breaks my heart to think of her trying to sleep at night, trying to get up in the morning, trying to make breakfast for her other children.  It breaks my heart to think of her trying to make decisions about what to do her child's body, picking out clothes to wear to his funeral, attempting to look into her son's empty room.  It breaks my heart to think of Christmas coming so quickly and there is no doubt there are gifts already purchased and wrapped with his name on them.  My heart just breaks for her.  I know her pain and I can't do anything about it.  I can't take it away.  I can't make it easier.  I want to but I can't and that weighs so heavily on my heart.  It is so painful to watch another mom grieve.

I don't want anyone to read this and think poor Erin.  This is not about me.  I recognize that I don't know her pain.  It is not the same as mine, no ones ever is.  But I empathize deeply with what she is facing.  She has a long journey ahead of her.  All I can do and am doing for her is pray. I pray that God reveals his deep, deep love for her, her family, and her son in ways so profound that she can find some comfort.  I pray that with God's help she can walk through this darkness and one day step out of it and regain a life where the pain is never erased but is surrounded by great joy and great hope.  God hear my prayer.

Dear Melissa Altman and our Crossbridge Family,

Today is January 24th. Two years ago, January 24th 2010 was on a Sunday. I led worship at Ridgeview Church, and Erin and my girls were all with me for only the 3rd time in almost a year. You see, my son Josiah was on a hospital bed in the Pediatric Cardiology ICU in Charleston, SC which was 220 miles away. That morning, while I was leading a worship song by David Crowder entitled "You Make Everything Glorious," our medical family of professionals performed CPR on our son for nearly an hour before finally conceding that Jesus had taken him home.

Erin and I received the news via telephone minutes after the church service at Ridgeview concluded. After collapsing on the ground together in a tidal wave of emotions, we began the 200 mile drive, most of which we spent in silence. I found myself quiet and emotionless inside. Now what were we supposed to do?

Two years have passed, and I'm still not sure what I'm supposed to do. There are times I am brought to tears, but I still feel a strong emotional tug far less than I would prefer. Grief is a very strange emotion. It takes on forms of anger, depression, intense sorrow, and at times intense joy. I remember feeling a similar way when my grandfather passed away. However, I experienced my father to have a new soft part on his heart. Tears flowed often. First about grandpa, then about graduation ceremonies monumental childhood achievements, and now tears fly at the drop of a hat. This has not been my experience however. I still feel at a loss for what to do. Erin and I experience grief totally differently. How could we manage this together?  In the first few months after Josiah's passing, Erin and I committed to each other to read the entire Bible through in 90 days. We felt that if nothing else, this should be a place to start looking for answers to all the questions spinning around us. She and I loved that season of life. Pouring over such large amount of scriptures gave us a new big picture prospective on God's Word.

The months that followed were very sweet for us. God had unmistakeably directed us to move back to our home region of Buffalo, NY after almost 10 years in SC. He made it so very obvious that we have to have been blind and deaf spiritually to miss all the cues He was giving us. Through this process we became part of the core team and pastoral staff of www.theWELLbuffalo.com which has been a ride of a lifetime, experiencing a Creator God, and how he interacts with his human creation.

Yet, while all of this continues to happen, and joyful experiences surround us on every side, grief continues. And I don't know how to grieve. I've learned that Erin and I don't grieve in the same manner, and that she and I grieve very differently from other people who have experienced loss in this way. Fact is, nobody knows what to do. People don't know what questions to ask. I don't know how to express myself. New friends don't know what we've been through. I can't decide whether to tell them every detail, or just the "highlights."

Part of what we have been experiencing at theWELL has been wrapped up in a massive commitment by our church and our staff to be intentional about building relationships, and sharing our building space with people in recovery. Alcoholics, Drug Addicts, Over-eaters, and so on recovering from their addictions and the damage it has done to their lives. We have learned that this community has a far better understanding of what it means to be real, genuine, and honest about who they are then our typical American churches have been. They know what rock bottom looks like, and know they need help. Through the process of understanding this, we have also come to grips with the fact that every human has hurts, habits, and hangups that are at the end of the day: unmanageable. For some it is alcohol, others adultery, and others pornography. But to some its anger, bitterness, or complacency.

My name is Milo, and I don't know how to grieve. I know at the end of the day, this is a hangup that is not in my own power to remedy. I believe wholeheartedly that Jesus has the power to heal our wounds, and that he is doing so a little each day.

Lamentations 3
22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.

On of the things that has changed about my personality since Josiah died is that fear creeps into my life way more than it ever used to. I don't like it because it isn't part of who I was before. It is something that I fight against and am so grateful for my firm foundation and trust in God because that allows me not to be overtaken. It's weird too, because I don't find myself being fearful of events or the potential of bad things happening, I actually fear my emotions.

I've been working on a little father's day present for Milo this week and I have been reminded of something I used to feel a lot when we first got married. I guess the busyness of life and kids have gotten in the way in recent years. I was reminded yesterday how serving your husband and doing something special for him evokes and stirs up feelings of love. It caught me off guard yesterday as the girls and I were working on his gift to notice the giddy butterflies I was feeling in my stomach. I don't know how to describe it but I think you know that excited "lovey" feeling you felt when you were young and there was a boy you liked! The way I used to feel all the time when Milo and I first met!

It's always been a birthday tradition in my family to tell your birth story on the eve of your birthday, my mom still tells me my birth story every year and I've been telling my girls theirs. So I figured I would repost Josiah's birth story that I wrote last year on his birthday.

I hope to write a little more about our day later on this evening, but I wanted to share a couple of pictures of one of the small ways we remember our sweet boy yesterday. It was freezing yesterday, well actually well below freezing, like -1 degrees freezing. But God blessed us with a beautiful sunny day, so we took the girls outside wrote Josiah's name in the snow and made some snow angels! The four of us had a wonderful day just spending time together talking about and remember our beautiful boy and brother. More to come...

I love Friday mornings.

11-28-10 Story Part 5: Milo & Erin Wilson from theWELLbuffalo on Vimeo.

Milo and Erin tell their powerful journey through the loss of their son Josiah. Learn what it means to be "A heart that holds on" through even the most difficult times. Listen in as they discuss the pain of great loss, as well as describe what it feels like to be wrapped into the loving arms of a loving God. Learn more about their story at www.thewilsonheart.com

I meant to write this post yesterday but never got a chance to sit at the computer. So one year ago (yesterday, October 30th) this face literally made my knees buckle. If I had not been holding onto his crib rails or if the room wasn't filled with doctors and nurses I believe I would have fell to my knees that's what I felt like. It was one of the most intense and memorable moments in our sweet babies life. This was the day, at just over 5 months old, Josiah got his trach and his g-tube and so it was the very first time we ever saw his entire face. No tape, no tubes, just his precious face. The feeling I had in that moment was so intense. I am so grateful for that moment. From that day on we were able to hold Josiah whenever we wanted to and it was the day that gave us the hope for being able to bring him home. I will always treasure October 30th and the sight of that beautiful face. I love this boy so much. He is still such a huge part of our daily lives and our family. Today actually, Hazyl's class at church wrote letters asking Pastor Darrick questions they wanted answered. Her question to him was, "Does God take care of babies in Heaven?" When she told me her question she added, "because I want to know if He is taking care of Josiah." What a precious question she has about God. Not a day goes by when our precious son is talked about between the four of us at least. We love him and we love God because of what He is doing in our family through Josiah.

I've been wanting to share a post about how all this moving to Buffalo stuff came about but it's hard to know where to begin. I guess I will begin with… This is a God thing. I've told many people lately that we couldn't have created this ourselves. So I'll share some of the things God has given us to know this is not of us. As these things came about through the decision making processes they've served as confirmation. There are a couple of stories I'd like to share but I'm pretty sure I'll only make it through one tonight.

Today officially marks the day that we have lost Josiah longer than we had him. He was with us for 8 months and 4 days and we have now been without him for 8 months and 5 days. I probably wouldn't have blogged about it but our crossbridge family wrote this post about our family and it touched me greatly that they remembered this milestone.

We are participating in the American Heart Walk in Charleston this Saturday. We walked last year while we were there. Lots of other heart families come each year for this event. It was fun last year to meet lots of families that at that point we only knew through our blog and facebook. There is a pediatric cardiology reunion at the children's museum on Saturday night that the girls will love. I've had mixed feelings about going this year. Last year it was a little difficult because I didn't have a baby to show off, he was still in the hospital. This year I am looking forward to seeing people but it's even harder not to have a baby to show off. Last year I remember walking by a table that said "Heart Disease Survivors." It had free t-shirts and hats for those who had won the battle against heart disease. I remember last year thinking, "Well, I guess we don't count this year because we haven't left the hospital, maybe next year." That has bothered me lately. I am a competitive person and when you count heart disease as a win or loss. We lost. So we will walk this year in memory of our son and raise money for the those whose lives are still affected by congenital heart disease. We choose to raise money in hopes for a win for other precious babies like our Josiah.

I haven’t blogged in a while and when people ask me why I’m not blogging my response usually is, “there is nothing new, nothing worth sharing.” I’ve had a rough past month struggling with the mom and wife I want to be in the middle of grief. Anyway this past week we traveled as a family back to Buffalo where Milo and I both grew up. We came home to see family and it’s been wonderful.

On Sunday Milo and I went to this new church plant in one of the suburbs of Buffalo. It’s a lot like Ridgeview and we wanted to check out what new churches were doing in the Buffalo area. It was great. We met lots of great people who we had lots of connections to. The best part for me though was what I experienced through the worship service. God really spoke to my heart and worked in a healing way. The pastor spoke from this passage in 2 corinthians chapter 3 where Paul talks about how before we turn to Christ there is a veil over our hearts which keeps us from seeing the full glory of God but that when we turn to Christ that veil is removed and our hearts a made aware of the glory of God. Through the pastors sermon I had this overwhelming feeling of gratefulness that the veil has been removed from my heart and that I do know and see God’s glory. What a privilege I have been given. I just felt God telling me to rest in His glory, to let His glory surround me and comfort me. I tend to loose sight of His glory and the awesomeness that it is. As the final song played I felt God speak to me again. The song was a song by Hillsong called “Soon” and the words of the chorus are this:

I will be with the One I love

With unveiled face I’ll see Him

There my soul will be satisfied

Soon and very soon

Obviously, this song was talking about heaven being the place where we will completely see God’s glory and where we will be satisfied. I have never been one to really identify with songs that talk about how wonderful it will be to one day be in heaven with God. I think I have a skewed view on longing for heaven. See I really like my life, I love being a mom, a wife, a daughter, a friend. I love serving God here on earth. I think it’s a great place and I believe God’s got great things in store for us here on earth. So I’ve never really been one to long for heaven and songs about heaven have never really resonated with me. They obviously do more so now, after Josiah’s death, but this song on Sunday along with the pastors message really spoke to me. I’m going to try and explain this but it might not come out right. You see I’ve been holding on to this thought that despite how wonderful heaven is wouldn’t Josiah be happier here with his mom and dad and beautiful sisters. I can say given his circumstance with all his medical problems he’s better off in heaven where he is not suffering but I’ve never been able to say given him here on earth whole and healthy or him in heaven whole and healthy, that heaven is better. I think of him as a baby who needs his mother and what God told me through this service was, yes Josiah is a baby, but more importantly he is one of God’s created children and as a child of God he is completely satisfied in God’s presence. God allowed me in the service to be reminded of God’s glory and the glimpse of it we get when we follow him here on earth. Then I was able to realize how privileged Josiah is to be able to see the complete glory of God as he sits with Him in heaven. I’ve always felt a little sorry for Josiah, because in my mind wouldn’t he rather be with his mommy and daddy and sisters. I guess that’s part of wishing to still be needed by him. But this past Sunday God showed me just how lucky or privileged Josiah is to be with His creator and that was very healing and freeing for me as his mother.

-A Heart that Holds On

So after I wrote the post last this is what I read today. It's from first Corinthians chapter 13. This is a well know chapter. The chapter commonly referred to as the "love chapter." The part many of us know well and can probably quote goes,

Milo and I have just finished reading through the Gospels. We read through them in large chunks so it only took us about 10 days. We've been working through this Bible reading plan and I've been looking forward to the point when we read the Gospels, so I was very surprised to find myself crying every day as I read the Gospels. I just kept reading over and over about all the miraculous healing Jesus did. The theme is "your faith has healed you." Jesus tells his followers that over and over when he heals them from their physical aliments. He also tells his disciples many times about how their faith can do anything. All that, faith as small as a mustard seed can move mountains stuff, sure made me question things. Not to worry, I'm not losing my faith our doubting my beliefs. It's just who I am. It was how I was raised. I tend to question things because I feel like it makes me believe more in the truth I find. So here I am reading through the Gospels the books of the Bible that are suppose to bring me such hope and I'm crying because Jesus heals everyone he comes in contact with. There are no stories in the Gospels ( I don't think, I suppose I could have missed one) when Jesus chooses not to heal and even when he didn't heal right away he raised dead people back to life. As I read these miracles over and over I couldn't help but ask why He didn't choose to heal my son. I believe He could have. I remember sitting at the funeral home in Charleston the day after Josiah died and them telling me that they had already brought Josiah's body there from the morgue. I sat there thinking Jesus could still bring him back to life. Couldn't he? Then I go back to what Jesus said over and over, "go, your faith has healed you." So of course I question. I think I have enough faith but maybe I don't.