So, I am feeling an overwhelming sense that we have worn out our welcome in the PICU. I know that sounds strange, and please know it's not from the nurses. Nurses truly have a nurturing gift. It comes from the docs, in not so many words, but since they all have their opinion which is that Noah has a progressive disease, they've done all they can. I also don't get the sense that they respect our decision to have Noah undergo a tracheostomy. They can't say that, but anyone who knows me, knows that I often know deeply about others' hearts and intentions...

The statement the PICU attending made about anyone coming in was somewhat retracted...he came in and clarified with a cya statement about paper work and legal stuff. Understood. Regarding Noah having some acupuncture, the doc said he'd be okay with that even though he still has his opinion and as long as it didn't hurt Noah...IRONY here, folks!!! They want a brain biopsy along with a muscle biopsy (even though they said those two things wouldn't tell them anything they think they already know), but he's concerned about acupuncture! Hello!? If they don't think anything can help Noah, as long as we are desiring this therapy for Noah, what do they care? Anyway...

Today my gramma died in California. She was 92. She had had dementia for several years. But instead of telling you how she died, let me tell you how she lived...She lived tenderly. She ADORED her husband, my gramps that used to sing "BabyFace" and play "Flight of the Bumblebee" on his violin. She called him "Nicky". When he died, I know part of her went with him...She loved her 2 children that lived and the many that died...she loved her 5 grandchildren and her great-grandson (she really only knew one because she had never met Em or Noah). She made the best chocolate chip cookies and cherries jubilee. She collected seashells and appreciated the small beauties in life, like love and family. She had fun jewelry that I would dress up in whenever I went to her house. All these are fond memories, but what I admired most about my gramma was her love for God. She treasured His word and knew SO deep in her heart that Jesus Christ had died for her. She did not take that for granted, she knew it was a gracious gift...

Anyway, think about why you love the people you love. Think about their qualities, even the ones that make you crazy sometimes. God has woven all of our lives together for a purpose...don't get stuck in a rut (a grave without ends) because you don't see eye to eye on everything. Honor them, tell them you love them. Jason and I can never say we love each other enough because if those are the last words, they are powerful ones. I loved my gramma. I pray that in the years that she did know me, she always knew that. I knew she loved me...