11/07/2025
After what started out looking like a very successful morning, the day quickly turned into a very frustrating and extremely long waiting game. I don't like to complain on here for various reasons, mainly because I want this to be a positive and uplifting environment. But there comes a time where I need to be honest and be able to vent/decompress.
I know the medical field is extremely complex and many of the people we are blessed to have part of Gideon's care team are AMAZING, and I truly mean that! There are soooo many doctors and nurses that we truly couldn't get through without. (Shout out to children's 2 for always being the best, not just for Gideon but myself included 💗)
With that said it is extremely frustrating when you plan ahead, speak to multiple people to ensure all of Gideon's plan of care is ready and available prior to coming to a different location only to be met with opposition from doctors who have never seen Gideon but claim to know what will work best for him! Gideon has MANY specialized care plans that are specifically geared towards helping to regulate his very complex bodily needs. He is NOT a 'by the book kid.' I get so tired of constantly arguing for his basics needs when they are literally in black and white in the system, complete with details as to why these are needed.
As tiring as it is, as his mother this is my greatest calling! I am his advocate, his voice and his protector and I will ALWAYS make sure he receives what he needs, I will never stop fighting for him!
Here's to night 2, but looking forward to tomorrow with great anticipation.
Thank you for your prayers, support and for the grace to be real and vulnerable about the reality of advocating for medically complex children. If you know someone walking this journey, tell them they are doing a good job and you are proud of them, because I can assure you they are their own biggest critic.
"Great is the Lord, and greatly to be praised, and his greatness is unsearchable." Psalms 145:3
