Please know that this blog comes from the heart and is meant with the best of intentions. Sometimes I feel like I shouldn’t blog or write some of the things I do……Yes, we had a 26 weeker, but he hasn’t faced many of the issues that some other preemies have. So, take this with that proverbial grain of salt, and know that my heart is with all of you and your children.
Five and a half years ago, I couldn’t imagine Ryley running. I hoped and prayed that he would survive, and dreamed of the day he might do things that “normal” kids do. Five and half years ago, we were in the midst of our NICU journey. I wondered if we’d ever even get through one day without Ryley having a brady. I wondered if the small brain bleed would get worse or would go away. I wondered if he would see, smell, hear, touch, walk, speak. I wondered if we would ever go home. Some days, I feel VERY far away from those fears and worries. Some days, I can’t seem to get away from them. Five and a half years is a long time. It’s also a short time in the grand scheme of things. But it’s long enough to know that my son does see, smell, touch, hear, walk, and speak. It’s enough to know there is hope. It’s enough to know that maybe part of why we went through what we did was to take something from it and pass on hope to others.
I will never forget meeting parents of a 26 weeker getting ready to go home our second week in the NICU. I found it hard to believe we would ever get there ourselves. Right before we left, our neonatologist introduced us to some new parents of a 26 weeker who had just come into the NICU days before. We had come full circle. I feel like we’re still doing that. I love meeting parents of “older” preemies who have made it…..struggled, survived, succeeded, whatever the results of their prematurity had been. I’m not an expert on being a preemie parent. I struggle. I wonder. I worry. I watch, ever so closely watch.
Right now, I’m in a cycle of hope, and of worry. Ryley is playing t-ball. Five and a half years ago, I didn’t know and doubted in my heart that we’d ever see this day……the day he would hit the ball and run to first base…….the day I would yell at him from across the field to stop digging in the dirt around 3rd base and pay attention to the game…..the day I would see my son throw that ball from the pitchers’ mound to first base…..the day I would see him take joy in playing the game. On the worry end of things, Ryley’s knees have been bothering him again. It’s gotten progressively worse over the past year. I worry…..is this the result somehow of his prematurity? Is there something else going on that I need to stress over? Is it just because he’s growing so quickly? And now I have TWO limping boys in my house. Ryley has been limping since Monday. He says his heel bothers him. Doubt crowds in. Do I haul this one to the doctor too? Demand some kind of further testing to ease my paranoid preemie mom mind? Subject him to stress so I can relieve my stress? And I wonder if we haven’t somehow gotten away with something over the past five and a half years….that things were too easy, too easily recovered from, and that it’s going to come back and haunt us at this stage in the game. The asthma thing was kind of expected….it still hurt when he was finally diagnosed this past Fall, but somehow I knew it was coming, and we learned pretty quickly to deal with it.
I’m sorry if this seems scattered. I HAD a clear picture of what I wanted to write about today, but as sometimes happens when you’re journaling, your real thoughts and feelings have a tendency to come to the surface, and fight their way onto the page. I wanted to give hope to those early in the journey of preemiehood. So, here is a picture of Ryley in his t-ball stuff……hard to imagine that this big boy was once wired to the hilt, and couldn’t even remember to keep breathing on his own!