And I am terrified. I don't know how else to explain the feeling that sits deep in my stomach, that bubbles up when I let myself think about what will happen in 3 weeks. The feeling that brings tears instantaneously, that makes me nauseous and that makes me wish we could go back to any other time besides now. I am so scared. A few weeks ago when he had pneumonia and I knew it would be postponed again, I felt relief. My kid had PNEUMONIA and I was relieved. I knew it meant we had more time. And speaking of time, why is it flying right now? First VEPTRS were in March. It was New Years and then it was March. That happened in the blink of an eye. But a high fever and a spot of pneumonia set surgery back. Surgery was then scheduled for 5/31. March to now, flew. April is a blur. By the time I am finished with this blog post, it will be June 14. And I can't make it stop.
I feel like I am on an emotional roller coaster. I understand what the VEPTRS will do for Owen. I understand how blessed we are that such medical technology exists. I know my son will have a shot at a life which does not include debilitating respiratory issues. I get it. And I am thankful. But my poor baby is about to undergo a surgery that includes 4 rods, incisions, drain sites, pain, lumps, bumps, skin breakthrough issues, and the beginning of the next 15 years of surgical management of his rib cage and lungs. This isn't 1 time surgery. This is the next 15 years, 2 surgeries per year for expansion. At a minimum.
I cannot wait until I write the blog entry after surgery when life has calmed down that says- all went well, we are great, Owen is fine. I cannot wait. Only the parents on the other side of June 14, who have VEPTR kids, know what that feels like. For now, I only know today and the next three weeks. And I hate this. I try to feel lucky. I try to feel blessed. I can't right now.
If there was one part of Owen's syndrome that I would change it would be the progressive scoliosis. It's a life changer.
I don't want my baby to go through this. Maybe I sound like a baby. I don't care. I hate this feeling.
Please pray for Owen. What he is about to endure is serious. I am not sure how much I will write between now and then. Clearly, I am in a bit of a state. Please keep my boy in your thoughts.
Thank you.
