Today, I find myself at a loss for words. My heart is overwhelmed with fear and uncertainty, and I don’t know how to feel. Wally’s journey has already been filled with more challenges than any child should have to face, and today, the weight of it all feels heavier than ever.
I received a call from the ophthalmology department today. The soonest they can schedule Wally’s surgery is the 26th—two weeks away. Two weeks. As I hear those words, my mind fills with worries, doubts, and an overwhelming sense of dread. I am terrified of Wally getting sick again. Every time he falls ill, I feel like a part of our life is taken from us. His eyesight, which gives him the ability to experience the world around him, is a blessing that we’ve worked so hard to protect. But with this surgery looming, I find myself asking—is it worth the risk? Could this surgery, which could improve his quality of life, make him worse? I can’t help but feel gutted by this uncertainty.
The surgery itself is critical for Wally’s health. His eyesight is a vital part of his well-being, and without it, he would face an even greater challenge navigating the world. But with the surgery, comes the risk of complications, particularly with his already fragile health. And the possibility of neurological fevers, which could arise from the surgery or from an infection, is a constant source of worry. Fevers that come out of nowhere, without any clear cause, can lead to severe consequences, including brain damage. As a parent, the thought of my child enduring that kind of pain and uncertainty is almost too much to bear.
Tomorrow, I will speak with his medical team to discuss the next steps. I’m praying that we’ll be able to make the best decision for Wally. But right now, I am torn. Do we take the risk of surgery, knowing that it could improve his life, but also knowing that it could set us on an even more difficult path? Or do we wait, hoping that his health will stabilize, and that we can avoid the need for another invasive procedure? My heart aches as I think about it.
In the meantime, we are trying to manage the fevers. We’ve been able to space out his Motrin a bit more, and I’m holding onto hope that the higher fevers he’s been experiencing are just a result of the virus he’s battling, not something neurological. But even with that hope, the fear is still there. If the fevers are neurological, it would mean even more hospital stays, more treatments, and potentially more damage to his fragile body. I just don’t want to go down that road.
Wally’s ability to fight and survive each obstacle has always amazed me. But as his mother, watching him struggle with something so painful and potentially life-threatening, it feels like the weight of the world is on my shoulders. I just want him to be happy, healthy, and safe. I want to protect him from every possible harm, but I know that’s not always possible. The fear of what could happen is paralyzing. And the thought of losing his progress—his ability to live a full life, his ability to see and experience the world—is devastating.
As we wait for the surgery date, I am asking for your prayers. Please pray that Wally’s fevers will subside and that they will not be neurological. Pray that his brain will heal from any damage caused by his previous illnesses. And above all, pray that we will have clarity about the surgery. I don’t know how much longer I can carry this weight alone, and I need strength, guidance, and peace as we navigate these difficult decisions.
It is in these moments of uncertainty that I cling to the hope that Wally’s strength will carry him through. He is a fighter, a resilient little soul who has already overcome so much. But as his mother, the worry never fully goes away. Each day is a new challenge, but with your prayers and support, I know we can get through this.
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Please keep Wally in your thoughts, pray for his healing, and pray that we’ll have the wisdom and strength to make the right decision for his future. Thank you for always being there for us—your support and love mean more than words can express.
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