Thinking about when we got these pictures taken - almost exactly one year ago - knowing that surgery day was almost upon us, I wanted some memories of those moments because if I could have stopped time I would have. I remember stumbling across this amazing photographer via Facebook who dropped everything and came to our home. Later we stood on my front porch and I thanked her for the gift she had given us. And we were both in tears as I shared some of Noah’s story, our story with her.
I remember receiving these Be Brave shirts from another mama in California who had been following Noah’s journey. From afar she saw strength in me, in us. Somehow I did feel a sense of strength in that moment, wearing those shirts with the two words that had so much meaning, in our new home, with my family.
Afterwards I went through the motions as we had more appointments, another MRI and a final meeting with the neurologist and neurosurgeon. Over the weekend I tried not to think of what was coming and to enjoy what we had then, and be present. But whenever I let my thoughts wander I would be overcome with so much grief and pain that I thought there was no way we could go ahead. Then something happened. For reasons that I’ll never know, Noah got sick that weekend. And the decision to postpone surgery was made for us as he couldn’t have surgery if he wasn’t 100% healthy.
The following weeks went by in a blur. I was scared that we were just postponing the inevitable. We had another big scare roughly six months later where we spent another week in hospital. It made me wonder again where we would have been if we had gone ahead with surgery in January.
I’ve had many regrets in my life. But this is not one of them. I know what happened happened for a reason. I know that we are not out of the woods - we never will be - and I know that I can’t live in fear of what may come tomorrow. Sturge-Weber Syndrome is progressive. No two cases are alike. It can come on when you least expect it. And it may get worse over time.
More in comments 👇🏻