Gabriel and I were at the hospital from 12:30 PM to 7:00 PM today. Chris was sleeping in his wheelchair when we arrived but woke up with all the noise Gabriel was making. Gabriel as usual saw it first and yelled “Papai acordou” (Daddy woke up). He wanted to sit on the wheelchair as usual, he hugged and caressed and kissed his father… I just realized how Gabriel just accepts Chris as he is, he is 100% comfortable and absolutely loves going to the hospital –to be with Chris but specially to play with the other kids in the hospital. We left today with Gabriel screaming that he wanted to stay with his “amigos”.

 

Chris was the same today, there’s no change from what we know he has been doing… focusing and tracking Gabriel around, but not responding. His arms were a bit stiffer today, I tried to stretch them and he was making really painful expressions and complaining by vocalizing. He gave me one single smile early in the day that made me so happy but no more for the rest of the day. I gave him a really nice feet/ legs massage today.

 

It is disheartening to look forward so much to spending the weekend with Chris, to long to spend the time you don’t have during the week… to long for something to happen… and when nothing happens day after day, it makes you crazy… I long for the day when this unbearable pain in my heart will fade …