We all have things in our lives, moments, periods or seasons of life that come to define us. Shape us and mold us into who we will be from that time forward. Some of these moments are tragic, some are times of celebration, some are built on heartache and pain, while others come out of joy. I think its fair to say that everyone has a story to tell. Some of us don't realize it, some of us go through life thinking our story isn't compelling, our story isn't worth hearing. But I can say with confidence that I have never had someone share a story of their lives, when they were being completely open and honest, being vulnerable, that hasn't been compelling.
Its in the stories that we connect. Its in those times of honesty and vulnerability that we see how we are all traveling a road, and we are all seeking that place where there is nothing that can hurt us anymore. I have been on a journey over the last several months that I can honestly say has challenged me more than I have ever been challenged. Its been a time where I have spent substantial time really examining what I believe and what all of this, this life, means.
Late in July 2014 my third child was born. His name is Trent. He was a couple weeks early and his arrival caught me a little off guard. I just don't think I was completely ready for him to be here. But than I saw him, and he was, just like my older two kids, he was amazing. We had a fairly uneventful first few days with Trent, which is what you want with a newborn. We had spent a few days settling in at home before we received news from our doctor that there was some things that came up on a newborn screening that had been done. We were told that we needed to take Trent in to have some tests done and take a look at somethings.
We then began a series of tests over the next several months that we kept being told should show Trent was fine and things were clearing up. Instead, according to a specialist we were working with, things seemed to be heading in the wrong direction. We were informed that it appeared that my son may be facing a condition that would take his life in infancy. An extremely rare, extremely difficult disease that had no cure and really no treatment at all. So often when we go through something difficult we will reassure ourselves by saying things like "well, at least I don't have it as bad as..." and we fill in the blank with some situation that we know about. This was the first time in my life that I honestly didn't have something to fill in that blank with. I was, we as a family, were faced with the reality that we would lose Trent before he was a year old. We had doctors telling us this was a big deal. This was serious.
Its in the stories that we connect. Its in those times of honesty and vulnerability that we see how we are all traveling a road, and we are all seeking that place where there is nothing that can hurt us anymore. I have been on a journey over the last several months that I can honestly say has challenged me more than I have ever been challenged. Its been a time where I have spent substantial time really examining what I believe and what all of this, this life, means.
Late in July 2014 my third child was born. His name is Trent. He was a couple weeks early and his arrival caught me a little off guard. I just don't think I was completely ready for him to be here. But than I saw him, and he was, just like my older two kids, he was amazing. We had a fairly uneventful first few days with Trent, which is what you want with a newborn. We had spent a few days settling in at home before we received news from our doctor that there was some things that came up on a newborn screening that had been done. We were told that we needed to take Trent in to have some tests done and take a look at somethings.
We then began a series of tests over the next several months that we kept being told should show Trent was fine and things were clearing up. Instead, according to a specialist we were working with, things seemed to be heading in the wrong direction. We were informed that it appeared that my son may be facing a condition that would take his life in infancy. An extremely rare, extremely difficult disease that had no cure and really no treatment at all. So often when we go through something difficult we will reassure ourselves by saying things like "well, at least I don't have it as bad as..." and we fill in the blank with some situation that we know about. This was the first time in my life that I honestly didn't have something to fill in that blank with. I was, we as a family, were faced with the reality that we would lose Trent before he was a year old. We had doctors telling us this was a big deal. This was serious.
So often when we go through something difficult we will reassure ourselves by saying things like "well, at least I don't have it as bad as..." and we fill in the blank with some situation that we know about. This was the first time in my life that I honestly didn't have something to fill in that blank with.
I have honestly never been more afraid in my life. I couldn't do anything about any of this. I couldn't fix it. There was a weight that I felt that at times made my knees buckle. My wife and I took turns being the strong one. It was hard to sleep. When you are presented with the fact that you could lose your child and there is nothing you can do about it, that is a thought that never, ever leaves your mind.
We did the only thing we could think to do. We asked for support from our friends and family. We had so many, overwhelming numbers of people reach out to us, tell us they were praying for us. We had people supporting us from around the world. As awful of a feeling that the thought of your child dying is, the strength and hope you feel from being surrounded in prayer is amazing.
We had felt like we needed to learn more about what Trent had and what it would mean for the short time he had. We sought out more information and we were able to secure a consultation with a pretty big deal doctor, which happened through some pretty miraculous things coming together.. We were able to get an appoint very quickly, which again is a bit of a miracle. We finally were able to sit down with the doctor and he talked to us about the reality of Trent's issues.
The doctor told us that Trent is a healthy baby and is going to be just fine! Its crazy for me to even say that. We had been expecting some clarity about Trent's situation, because we always felt like our visits with the other doctor left us with more questions than answers. But we didn't expect to be told that Trent is going to be fine. We have come to find out, that while Trent does have some elevated levels of somethings that will likely be worked out as he gets older, that they are not at a level that are concerning. Our original doctor was working with a limited knowledge of an admittedly extremely rare disease. It took us getting connected with someone who was more knowledgeable in this particular area to gain the clarity we needed. I also firmly believe that more than anything else, the unbelievable network of support we had surrounding us played the biggest part in it all. Without the prayers and encouraging words we would not have been able to make it through all this.
It all came down to us sharing our story. I am not the kind of person that wants to burden anyone with my problems. But I felt compelled to share our story. There was nothing else I could do. Through sharing the story, people were lining up to pray for us. Through the story we were able to be put in contact with an expert in the field. Through telling the story we were able to celebrate with literally hundreds of people the news that my precious little man is gonna be fine, and his smile will continue to light up a room for many, many years to come.
Tell your story!
We did the only thing we could think to do. We asked for support from our friends and family. We had so many, overwhelming numbers of people reach out to us, tell us they were praying for us. We had people supporting us from around the world. As awful of a feeling that the thought of your child dying is, the strength and hope you feel from being surrounded in prayer is amazing.
We had felt like we needed to learn more about what Trent had and what it would mean for the short time he had. We sought out more information and we were able to secure a consultation with a pretty big deal doctor, which happened through some pretty miraculous things coming together.. We were able to get an appoint very quickly, which again is a bit of a miracle. We finally were able to sit down with the doctor and he talked to us about the reality of Trent's issues.
The doctor told us that Trent is a healthy baby and is going to be just fine! Its crazy for me to even say that. We had been expecting some clarity about Trent's situation, because we always felt like our visits with the other doctor left us with more questions than answers. But we didn't expect to be told that Trent is going to be fine. We have come to find out, that while Trent does have some elevated levels of somethings that will likely be worked out as he gets older, that they are not at a level that are concerning. Our original doctor was working with a limited knowledge of an admittedly extremely rare disease. It took us getting connected with someone who was more knowledgeable in this particular area to gain the clarity we needed. I also firmly believe that more than anything else, the unbelievable network of support we had surrounding us played the biggest part in it all. Without the prayers and encouraging words we would not have been able to make it through all this.
It all came down to us sharing our story. I am not the kind of person that wants to burden anyone with my problems. But I felt compelled to share our story. There was nothing else I could do. Through sharing the story, people were lining up to pray for us. Through the story we were able to be put in contact with an expert in the field. Through telling the story we were able to celebrate with literally hundreds of people the news that my precious little man is gonna be fine, and his smile will continue to light up a room for many, many years to come.
Tell your story!
RSS Feed
