Today is a day our family doesn't forget. Today is the day that our son Josiah was born in 2009. He was born with only three chambers in his little heart, but with a big fight in his belly. After a series of surgeries, procedures, and sleepless nights, Josiah passed away 249 days later in January of 2010. Our family was blessed to have every moment we had with him.

Last weekend, here in Buffalo, our city was the recipient of a horrific mass shooting that took the lives of 10 members of our city of good neighbors.  It's all over the headline news right now, but I want to write it down, so that my memory doesn't fade on the context of the day when I look back years later.

We took our kids out of school for a couple hours apiece this morning, and served the people in our city hurting the most right now, very much in the same way that complete strangers served us during our grief, all those years ago. It was good to be the hands and feet of Christ today. It was good to work. It was good to pray. It was good to cry.

If you are interested in serving to support the community we love, there are many ways people are coming together. Here are a few we know about that have local presence on the ground.

North Buffalo Community Church
Fillmore Community Church

Faithful Stones Fellowship
Buffalo Community Fridge
Buffalo Resource Council 

Rejoice with those who rejoice; mourn with those who mourn. Live in harmony with one another. Romans 5:12-13

- Pastor Milo

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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?

Pastor Milo

@milowilson

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.

This weekend marks 2 years since our son Josiah received his tracheotomy, a procedure where a hole is cut in the neck, and a breathing tube is placed there for the ventilator to provide air support to the lungs. It is a semi-permanent procedure that is tough to handle as a parent of a CHD baby, because it feels like steps backward in the wrong direction. It means that your child will not be able to breath on their own for an extended period of time.

About a year ago, Erin and I told our story at theWELL Here is a link to that conversation. Much of it is about losing our son Josiah. Part of it talk through the passage that I read for my daily devotions this morning. Here is part of the video story from that day.

OK, So we have documented basicallly everything we could possibly think of during our experience here with Josiah. However, there is one story that we have yet to share with anyone. So this is the story we never told you.
The night before Josiah's Norwood procedure Erin and I had decided to stay with him late into the night. Dr Bradley had only given us a grim outlook on the upcoming surgery. We had to take a break from his bedside vigil for a while during the shift change, so we got some fast food and took it out to the courtyard to eat.
Neither one of us were hungry so we sat in stunned silence while our food got cold. We held each other and cried a bit, prayed and cried some more. Then I reached into my Arby's bag and pulled out a perfect heart. What?
Erin and I began laughing uncontrollably. We didn't know what to do with it, but promised each other to say nothing.
My jalepeno poppers had fused together to make a perfect heart the night before an intense heart surgery. Wierd?

the wilson dairy update

here's our beautiful boy!! he's doing great!

Josiah continues to improve. The doctors are very happy with his progress. They can see his stats improving, and we can see his physical appearance improving. It is great to watch.

We got a new neighbor in the bed beside us today. She is Addi Moore, and she is a pretty famous patient around here. The Moore's were here over 100 days this winter, but now Addi has returned for her 2nd HLHS surgery, the Glenn, which she had today. I assume she is doing well, and we look foward to getting to know Adam and Jen better over the next few days.

We don't expect to see any major changes with Josiah over the next 7 days as we continue to watch them wean him fromm the ventilator. He was on 11 IV drips tonight when we saw him. I hope that number continues to decrease over the next few days as well.

Thats all for now!

Josiah has been stitched back up nd his chest is no longer open. He is still kinda puffy, but really looks a thousand times better. He still has 3 tubes coming out of his abdomen area which are draining some of the "extra" fluid his body is carrying as a result of these surgeries. He is not out of the woods yet by any means, but Jposiah has made incredible strides over the last few days.

I want to personally thank those of you who have committed to pray for our little boy. thewilsonheart.com recieved thousands of hits on Tuesday with many of you praying around the clock and actively engaging in Josiah's story. We thank You! We love each of you!

If any of you were ever in doubt, we want you to know that we give God all the glory for the miracle we have seen firsthand. He is the great physician!

So this is a picture of Josiah last night after the Norwood procedure. I admit, it is not a photo we will be putting in his baby book. However, it is the reality of what he went through yesterday. The doctors wouldn't even give us the odds of what we were up against, because of his list of complications, there was little or no data to compare him to. Dr Bradley even suggested that if we wanted to wait another day becuase weren't emotionally prepared to potentially lose a child, we could put it off.

But God is good! We recieved updates throughout the day, which we passed on to hundred of people who committed to pray for his little body to survive the procedure. He is doing very well!

The orange area on his chest in the picture is actually a protective cover over hisopen chest. We can look into the 1inch gap in his chest and see his little heart beating miraculously away. This is left open for about 24 hrs to allow the swelling to subside before closing him back up.
Thanks for prayin

This was taken about 5 hrs ago at 3am this morning. Erin and I were able to hold Josiah for the 1st time for about an hour. It was a bittersweet experience. It was wonderful to hold our precious little baby, but the circumstances as to why we allowed to hold him were a bit overwhelming. Our nurse gently lifted him from the bed, and put him into Erin's arms, with IV lines and sensor leads strung out like a broken cobweb behind him. It was wonderful, and it was awful.

The policy at the PCICU is to allow parents to hold their child the night before putting him through a major heart surgery in which he may not survive. Holding Josiah was a massive reality check.

Last night, the doctors let us know that through an echocardiograph done on Monday an addition condition called coartation of the aorta. This is a thin spot in the aorta, right where it needed to take on extra flow with the hybrid procedure. This leaves us with the Norwood as our only choice.

We kissed him goodbye at 7:30...

Here is our little guy at about 3 am this morning. He is still slowly recovering from the heart cath surgery on wed, and hasn't really woke up from it yet. These nurses are sweet, and they gave him the puppy you see in the picture, and make sure his arms are always wrapped around it in some way. As you can see, his eyes are now open, and are begining to be responsive rather than just a blank stare. He moves his arms with some control, and he will squeeze your hand. He is begining to initiate his own breaths, which is an encouragement. It is really good to see him come out of such a deep sleep. Keep praying. We will do the best we can to keep everyone informed!

Josiah is sick, but he is on the mend. Right now he is on a venti
lator and 16 different drugs I counted. He has 2 nurses monitoring him alone for the next 24-36 hours.

Ultimately we are waiting for his body to heal from a very complex and difficult 5 hour procedure he underwent today. Thank you for your prayers.

I had a conversation with a close friend after the worship service about the situation of our soon-to-be-born baby boy Josiah. He doesn't have a facebook account, and as a college student had been out of town for a number of weeks this semester. So, he hadn't heard the news.

Maybe you haven't heard either.

Our new baby has a heart condition called Hypoplastic Left Heart. This condition is also complicated by an additional heart defect called a Restrictive Atrial Septal Defect.

Now, as I told this friends, we need your prayers, and want you to know what to pray for. So, my wife Erin and I have set up a website www.thewilsonheart.com . This site explains as much as we understand about our child's condition, and will chart our progress along the way. Also, if you are reading this post from my home site, www.milowilson.blogspot.com you will notice an RSS feed at the top right hand side of the page with any updates.

Please pray for us, shoot us an email or call. Please ask us any questions you may have. We are not the type of people who like to be private in these type of matters. Talking through things with all of you is very therapeutic for us.

We love you all, thanks!

We went to MUSC in Charleston on Friday...

Our goal for this visit was to familiarize ourselves with the surgeons there, do an in-depth echocardiogram, (which is a very high quality ultrasound), and visit the Ronald McDonald House.

The physicians are incredible, and the staff was very good to us. We really feel good about our decision to go to MUSC. However, we ended up getting more bad news when the echocardiogram was broken down for us.

What we were told. His current condition is hypoplastic left heart syndrome, HLHS, which means the left ventricle is underdeveloped, or in Josiah's case nearly non-existent. Over the last few weeks, we learned that through a series of 3 surgeries he is heart would be re-plumbed to work off of 2 chambers. Though still very difficult and complicated, these surgeries are becoming quite successful and compared to a 100% fatality rate for HLHS cases 20 years ago, MUSC has a success rate of 90% or better. This is where we were at before Friday morning.

Friday, the doctors were able to determine that an Atrial Septal Defect is also a problem Josiah will have to battle. ASD in many cases is a hole between the 2 upper chambers of the heart that doesn't close properly after birth. In our case the same condition is referring to the hole closing in utero. Because of this blood is restrained from flowing between the dividing wall between the two upper heart chambers while in the womb. With this, blood flowing through the lungs (which have no oxygen in them yet until birth) is getting backed up. This fluid in the lungs, while already a serious problem with any child, presents some very difficult complications with a child like Josiah with a HLHS heart.

What does this mean? Josiah will need to undergo a catheterization immediately after birth to repair the ASD. Then, he will need to heal and recover from this procedure before the 1st operation for the HLHS repair can be done. Also, before, we were told to try to go as late as we could so that Josiah can grow as large as possible. Now, we need to monitor very closely how much fluid is building up in his lungs. If this reaches a dangerous level, Erin will undergo a C-section immmediatly, and he would be taken out to undergo the cathererization. The HLHS scenario is a 90% -95% success rate. HLHS with ASD is at a 48%-58% success rate. If he were to be premature, the stats get considerably worse.

What do we do? I don't know. We are praying. We are talking to close friends and family. We are "dealing" with things. However, this is like a bad movie we saw on TV once. This doesn't feel like it can really be happening to us. It doesn't feel like reality. As we are beginning to free fall, we find ourselves grasping for Biblical truths that we intellectually know to be true, but are too emotionally numb to feel.

Sometimes God uses other means to speak to us. On Sunday,(tomorrow) I will be leading a new worship song entitled: Amazing God, by Brenton Brown. After learning all of this, the chorus of this song, and it's referral to the heart, has a whole new meaning to me:

You're amazing God, You're amazing God
You can bear the weight of every heavy heart
You can heal the pain, you can clean the stain
You can turn our tears into songs of praise
You're amazing God


Thank you God.

Erin has finally given in and decided to write a blog. It is in honor of our coming son, Josiah Nathaniel into this world. Josiah meaning "saved by God," or "God heals" and Nathaniel meaning "God's gift." He has been diagnosed with hypoplastic left heart syndrome, a rare and dangerous heart condition. This blog will document our journey.

The blog can be found at www.thewilsonheart.com . I have put a RSS link in the top right hand corner of my blog, http://www.milowilson.blogspot.com/ where you can also follow our story. We intend to both post regularly with the latest news of our situation, and specific things for you to be in prayer for on our behalf. Thank you for the support many of you have shown already, as we have begun on this difficult journey.

We need your help. It takes a village to raise a child...