Something that’s been on my heart that I wanted to share as an update. Maybe this will help glean more understanding around our campaign for our Noah. I really appreciate you taking the time to read our shares 💚

We often hear, “He’s going to be fine,” or “He will be okay.” And yes Noah is doing amazing! He’s strong, determined, and has accomplished things doctors once told us he might never do. All of these things have been hard fought through his grit, determination and through a lot of intentional and consistent work every single day on both of our parts. 

What isn’t easy to see is everything happening behind the scenes.

I’m home with him and because of this I carry most of his therapy day to day. Our therapists are incredible, but they’re only with us a couple of hours each week. The real work happens in the in between - the daily exercises, repetition, and working through frustration when things don’t come easily. 

Milestones that seem simple can take many months of effort. For example, he army crawled for so long.. Teaching him to crawl fully took months and months and months. There were times I wondered, will this ever happen? But we kept going.. and we kept praying. When he finally started to crawl (which was the biggest feat ever!!!) he would only use his knuckles and could not bend at the wrist. Now he can bend at the wrist and we’re still working on him unclenching his hand. You see his brain is sending signals to the left side of his body to tense up and remain rigid. Something we work on every day and is part of the lifelong journey of CP. 

So what people don’t see are those daily challenges -  the frustration when he can’t pick something up with his left hand, or use both hands together the way he wants to. His body adapts which is incredible, but as his mom, of course I want him to have full use of both hands and both sides of his body.. What’s also important to realize is that these adaptations he is making on his own can also reinforce limitations if we don’t keep working intentionally on his left side.

So when people say, “He’s fine,” I know it comes from love AND sometimes it unintentionally overlooks the reality that he’s working much harder to do what comes naturally to others. 

Could Noah live a full life without stem cell therapy? Yes. But “fine” isn’t the same as giving him every possible opportunity to thrive.

Therapy has been our most valuable tool and it will always be essential. However, therapy works with the pathways that already exist - it helps strengthen and retrain the brain, not repair the original injury itself. That’s why we’re pursuing stem cell therapy. It offers the potential to support healing at a deeper level alongside the work we’re already doing every day.

This isn’t coming from fear based place or non acceptance - it’s coming from hope, and from a deep well of maternal knowing and belief in giving Noah every possible opportunity to thrive, not just “be okay.”

If you’ve supported us, shared our story, or encouraged us along the way - thank you. It truly means so much to our family. And if you feel led to help us get one step closer to this treatment, whether by donating or simply sharing this post, we are so grateful!! 

We will keep showing up for him, every single day 💚🙏🏻