All of my life I have been somebody who marks time. From as early on as I can remember I have been the person who says or thinks things like, “this time last year…” or “It’s been exactly 3 months since…“. Chances are that if you’ve ever told me your birthday, I still remember it today. I like looking back over the course of time and thinking about and remembering all that has happened. I guess that makes me nostalgic by nature.
This means that hard days are almost branded on my brain. So when that specific day is just around the corner, I am always keenly aware of it. When I was younger, these days would almost cripple me. Now (most of the time) I am able to reflect on the hard things that have occurred and be thankful for where we are currently.
With all of that being said, let’s circle back to the title of this blog post. After Ben’s discharge from the NICU on 3-13-17, he struggled to breathe while he was sitting up. He was diagnosed with tracheomalacia, which is when the back wall of the trachea(airway) is floppy. We were told that as he got older, it would get better. It did not. His tracheomalacia continued to get worse. It was at the point where he wasn’t able to sit up for very long without turning blue and passing out. We were carrying him like an infant all the time.
I felt like I was begging his team to find something wrong with him. Anything that would explain why this otherwise healthy baby could not sit up without having these blue spells. After several months of being “that mom“, we got a triple scope scheduled with ENT, Pulmonary, and General Surgery. These 3 specialists were going to look in Ben’s upper and lower airways to see what they could find.
What they found was heartbreaking to us. They saw that on the range of tracheomalacia, from mild to severe, Ben’s was severe. Not only that, when the pulmonologist( a doctor who specializes in the respiratory tract) applied the maximum amount of pressure to push it open, his trachea didn’t budge. His trachea was staying in a permanent state of being at almost 90% closed. So when he would sit up and that floppy back wall would flop down, it would cut off his air supply.
The ENT (Ear, nose and throat doctor) and Pulmonary doctor came out to talk to me in the waiting room. I was there by myself that day. Ben was also having a routine dilation of his esophagus and I had gone to those by myself for months.
After they told me their findings and explained to me what the next couple of steps could look like, I was left alone in the waiting room, filled with families watching me openly sob. It was like a scene out of a LifeTime Original movie. I was trying to process all that I had been told. To say that I was overwhelmed, would be an understatement.
September 6, 2017 was a hard day. Probably one of the most difficult days in Ben’s whole journey. We had just been told that our son, our sweet little boy who had been defying odds, was in a bad spot. He wasn’t getting better like expected, he was in fact, getting worse. We had a decision to make about having a tracheostomy (breathing device directly in the trachea) placed to hopefully help, or take a wait and see approach.
When I look back on this day and see all of the difficulties and remember all of the fears, doubts, and excruciating thoughts, I can’t help but to be so, so thankful that we are not in that same place today. September 6, for all of its hardship, was also a turning point in Ben’s care. It is the day that finally gave us some answers. It is the day that I now look back on with appreciation.
I wasn’t sure that I was actually going to publish this blog post, but after a conversation with a sweet friend I was encouraged. I want to share our journey of hope. That while this day last year was surprising to me, it was not to God. If Jesus is who He says He is (spoiler alert: He is!) , then I have to believe that He knew this day last year would come, and He was already working it for our good.