4:39 am - Day 14 - Reality post

It is the wee hours of morning. I have just listened to my baby scream, cry and fuss for over an hour. Up twice tonight with fussing. It is a reality that Bryan and I live.. night after night for 14 months. I do not get a break, I can not run away, I am here and 24/7 -Roa needs me. I write on this blog daily, trying to keep up my spirits and journal with a positive attitude. People don't want to know the gory details. They just want the big picture and to be informed of all that we are trying, the changes we are seeing. But tonight, like every night, I was slapped with the reality that my baby is not like other babies. My baby can not sleep because something in his brain doesn't let him. My husband and I go through life in a foggy reality-tired, drained and asking "why OUR baby?"
We watch other babies in awe- "look at her head control", "he can reach and grasp that toy WHILE he sits", "look at how relaxed his legs are". I taught early childhood special needs for 12 years and I NEVER looked at a child the way I do now. I have my master's degree with a focus on learning through play.... and I have a baby who CAN NOT play. Can not hold a toy and manipulate it, can not sit independently to interact with me. That is my life, day in and out. Waiting, praying , hoping that Roa will SLEEP, that his brain can let his body relax so that new connections can be made and he can learn to have fun and play like all the babies I see around me. People are quick to give advice- to say that all babies sleep poorly sometimes,... maybe it's a milestone coming, maybe it is behavioral and we should let him cry it out, maybe there is a medication we should try, maybe it's teething, maybe it is a muscle spasm tonight. ... The fact is, we don't know and we continue to struggle each night and pray that tomorrow night the melatonin will help or the HBOT will work like it seems to for others or his bath will relax him, or a massage will help.... We will listen to the screams, the crying, the pain he feels... and we will feel it too.