When Jude was born he spent most his time in our room like most newborns do. However, he stayed in our room because of his seizures and diagnosis that were given at three months of age. I never ventured into Jude's room much except to look around. I would grab some clothes occasionally, but eventually the clothes even made their way downstairs. However, I will never forget taking Jude into his room and laying him down in the crib for awhile. He loved it.
This is one of my most precious video's I keep on youtube.
Now Jude has his own room downstairs that was made from a converted dining room. We still have a baby monitor that picks up if he is vomiting or seizing. We have a little armoire that holds his clothes and a shelf system that holds his supplies. The walls are red since we know Jude can see that color and the ceiling is blue. Emily spent an afternoon perfectly placing glow in the dark stars on the ceiling so it would look like Jude was outdoors at night time. He has shelves made out of tree branches, a bear rug, adorable matching bedding, and "Welcome to Camp Juders" written on his wall. I know Jude doesn't understand what his room is about, but it's still his room. One of the first things the EMT'S always report to the hospital upon arrival from an ambulance is "he is well cared for with a very nice room". That is both nice and sad to me. Nice they take the time to realize Jude is so loved, but sad that so many special needs kids are unloved and not treated well.
I wanted people to see more than all Jude's equipment when they walked into his room. More than a hospital bed, an IV pump, and oxygen meters. I wanted him to be a kid and my kids have special rooms. It's not that important to some and in the grand scheme it's really not important at all, but I still wanted it for him and I am proud he has it.