Words can be something that causes someone the most comfort or the thing that can cause the most hurt in someones life. They change everything.
Words change everything.
I remember some of the times that my heart was shattered. All because of words.
When Tyler was 24 hours old, I was allowed to leave the hospital I was at and go up to see Tyler in another hospital on a “pass.” I hadn’t seen him and I was getting really anxious to see my son. Dallas drove me up and we went into the NICU. We were directed to the very back corner of the NICU. Right next to the delivery room window. He was so sick and so TINY. I was smiling, and I was happy to be the mom. My nurse was there, talking to me about Ty and his care. Soon the Doctor came over and was letting us know about how well he was doing given his circumstances. Because of my education I remember asking if he had brain bleeds. The Doctor asked me to sit down. I said no and that I was feeling fine. He proceeded to tell me that he did have brain bleeds and they were severe. And at that point, we were just waiting. I literally got hot, and instantly wanted to throw up and I got really dizzy. It was a CRUSHING.
That moment was life changing for us. Not just in words but in impact for the rest of my life. I remember what it smelled like. I remember the words. I remember grabbing my drink and asking for a chair and saying I needed to sit down. I remember the Nurse.
One day after spending a day at a follow up clinic for NICU babies called the Neonatal Follow Up Clinic ( NNFP) and Ty was not acting like himself. We had seen every single specialist that we had including a neurosurgeon and a neurologist. He passed the appointments with flying colors and they ad all told me that he was doing so well. They expected far worse than what we had. But as the day progressed he wasn’t acting right. He was crying when he was awake, he was sleeping way more than he usually did. Something was wrong. At one point in the night, I woke up and realized I couldn’t hear Tyler any more. I ran in to his room and something hit me like a ton of bricks. As I ran him to the closest ER and they couldn’t figure out what was wrong and they sent him up to the local children’s hospital I realized that something was seriously wrong.
I had to wake up Dallas and we went up to the hospital. At this point, no body cold figure out what was wrong. All the while his heart rate fell lower and lower. When they finally took him to get a CT scan and we had to go into emergency brain surgery, I felt sick. Literally sick. I threw up. I couldn’t breathe, my heart was racing. Those words- brain surgery- flipped my world upside down.
But I remember words of comfort.
The first time we left to go visit Ty in the NICU. We got back from using our “pass” and the head nurse came in and brought us juice, water and cookies. She asked if she could talk to us. Dallas and I were both laying in my hospital bed and this sweet nurse sat down and told us that this experience would either make us or break us. She said that we would have to work really hard. She said that we would be fine if we worked together.
One day after a VERY long day in the NICU, Ty was being poked and prodded so much that I needed to hold him down. After standing above his warming bed, I lost it. My mom came in and she took over. But in that moment there were no words exchanged. Because there didn’t need to be.
Words and actions are what provide hope.
Soon after our surgery when Ty was very little, I started experience nightmares. I had such a hard time sleeping while he was in the NICU and then when he got home, I spent my nights up with him and nights just STARING at the pulse oximeter. Whenever I closed my eyes, the experience of the NICU were always playing like a film strip on my eyelids. Even for a nap, or when rocking Ty to sleep, there it was. I would go through certain times of the NICU and I would be up for hours and hours. Other times, I would replay days. It was then I knew I needed some help.
I started to see a therapist. It was not long before she sent me to my family doctor and my OB to get me some much needed medication. The diagnosis. PTSD.
For a long time I was embarrassed. As I read and studied about it, the more sense it made. As I have gotten further from the event the film strip changes. There is no more long nights of replaying all 93 days in the NICU. Instead it seems to be just certain events. Events that are hard. Events like the blue bag. The code blues. The hard stuff.
I dream of good stuff and happy stuff, but the reality is, when we are facing days in the hospital those blue bagged nights are longer and more frequent. When I can feel my heart race a million miles, and feel like I can’t breathe, and like there is no island far enough away for what is in front of me, that is when I know that what I saw in that small little wing of the hospital, will forever impact the whole of me. Not just the physical damage it did to my innocent child, but to the memories I want to forget.
Words will never erase watching a “ war zone” were warriors are fighting, moms and dads are drowning and life continues around them.