Oliver used to wake up singing.

Really. He'd open his eyes, glance around his crib for a second and start to sing to himself. Lalala deedee deeeeee yaaaayaaa lalalala. He would sing for 5 minutes or more, his own made up songs, waiting patiently for Daddy to get him out of his crib. We'd listen to him through the monitor and just laugh and smile! It was so precious! When he was finished singing he'd call our names or play quietly with his toys.

Morning routine was Daddy's thing. He had to be out of the house earlier to get to school and wanted to make sure he got some quality Ollie Time before he had to go.

"Dada!" Oliver would squeal when Chris opened his bedroom door. "Dada up peez!" Chris would pick out his outfit while singing his "Good morning Ollie" song he had also made up. Like father, like son. Always singing. He'd turn on the Rainforest crib piano while changing his diaper and getting him dressed and they'd play "Name that animal" or "What color is that animal?" or "What sound does that animal make?" Every day. Cute outfits, games, songs and smiles. I'd be getting his breakfast ready and would listen to their sweet banter and think how lucky Ollie was to have such an awesome, loving Dad. Mornings were beautiful and everyday they'd warm my heart.

Weekend mornings were even better. One of us would pick Ollie up from his crib and still in his jammies bring him back to our bed and use him as the cutest alarm clock ever. Isn't it wonderful to hear your toddler's voice say "Up up up Mama! Love yuuuu" and blow you kisses as a way to wake up? How could you not wake up happy? Even at 6am!

Wake ups are not fun anymore. Not at all. I hate them. From love to hate, a complete 180. They are not beautiful, they are not precious and they are not heartwarming. Wake ups are scary and painful. Wake ups include seizures, muscle spasms and screaming. Every day.

Peaceful wake ups are just one more thing MLD has stolen from us. And it's one I haven't been able to adjust to. I still expect to hear him and Chris talking through the baby monitor. I still expect to wake up on Saturdays to a happy little face two inches from mine.

I feel so sorry for Oliver having to start his days in such a terrible way, it's so unfair. How is he perceiving all this? This world is cruel to him, this world where he can no longer move or talk. Is he waking up fearing the pain he will feel each day? Does he miss being able to do all the things he used to do? Does he miss when he used to wake up happy and singing?

We do.