Merry Christmas

Merry Christmas

It is amazing to me that we have managed another Christmas at home considering we have been waiting on a new liver for almost 5 months now. It’s one of those we wish it would have happened already but glad we were home moments.  Lennon appears ok probably to people looking at him, but I notice the changes. I noticed the blue-ish tinted toes, the bruises because is coagulation is off.. the labored breathing when he gets too excited…and yet knowing that he’s sick or getting sicker he still manages to make me and everyone around him smile. Santa got him a cleaning trolley with his own broom, mop, bucket, dustpan, spray bottle an a Diego Rescue Center. He loves both of them very much……

Looking for some innner strength

Looking for some innner strength

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. — Christopher Reeve  Some days I don’t know how I manage. Today was one of those days. What I often don’t write about is the cognitive disability that has impacted Lennon’s life…his impulsiveness, inability to focus and/or listen, inability to assess the safety and risky situation and the lack of maturity for a 7-year-old.  When you are with Lennon you have to be “on” all the time, especially when he is awake because you just don’t know what he may do next. I foster/encourage his independence but that comes at a price when he can’t assess situations accurately and they become unsafe. Lennon LOVES freezer pops,…