Thank you's & an early Nov Update

On this Monday morning, I find myself in a parent lounge. It's been almost a month and just last week I told my primary employer that I needed the next 2 months off to be w/ G. Husband did something similar. He told his employer what was going on with our son and (most likely) will be coming here around xmas time and staying for up to 12 weeks. We have decided G is not going to be alone anymore.

If they say he is not ready to come home after Scott's FMLA period is up... we have decided we will discharge him. He is not living here past that point. This is not a home. The experiment needs to be over if we couldn't find the answers by April 1, 2019.

Our family silently screams for a life together. Each of us tired of missing the other person. I can't imagine how Grant feels. I see him cling to me every second he has. Every day I gently explain that I will see him tomorrow. That mom can't sleep at the "school", but he will have time with me. I caught him out of the corner of my eye as I left last night. He was struggling to say his good-byes. He really doesn't want me to leave. The feeling is mutual.

Grant and I on Halloween. We "trick or treating" the different levels of the hospital. He liked going from office to office.

On a lighter note, there are SO many beautiful people here in the hospital. People I like to call my friends after all of this time. There are many angels that work here and take care of our children. They advocate like crazy when they see something is wrong. For example, there is a young woman, she sneaks in after G falls asleep and lathers his lips with Vaseline. See the picture above? Something is wrong. He won't stop licking his lips. Every part of his body keeps moving including his tongue. We can't get his skin to heal because he won't stop licking. He is now starting to teeth grind. I watch him closely taking note of his well-being. I am so grateful to be here, to notice these changes. But I am assured many others are noting the same so I am not alone like I would be at home with my concerns.

There are SO many angels outside of this place as well. An UBER driver paid for my ride home yesterday. Keller Williams Integrity NW gave me the largest donation to date. They actually went to 4 brokerages and raised more money than I could imagine. I wept in gratitude. I am shocked by the love. My colleagues at our elementary school sent me money. Many of you have not sent me money once, but have reached in your pockets a 2nd time in effort to lessen the burden. You have left me speechless. The plane trip I told you about a year ago... It cost more than they said it would and the Dept of Commerce played their hand and have made insurance cover that flight - deeming it medically necessary.

Many of you say, you can't imagine. Yes, I think you can...you wouldn't support us during this time if you didn't understand. THANK YOU. There will never be enough thank you's. Please know how much this means to us.

There are also so many people in Baltimore watching over us as well. I have other families that reach out to me and offer me rides so I don't have to pay or wait for a free shuttle. The Ronald McDonald House continues to take care of my housing and feeds me twice a day. My online friends from this area have reached out to meet me in real life and have offered Thanksgiving to being company over lunch. I assure you I am nearly never alone. I always have someone to talk to. In fact, I have trouble making time to return calls because I am just not used to this schedule. Up until Friday, I was spending my entire day with Grant. Now they are requesting for me to keep more typical parent hours. I am a bit crushed. Taking one day at a time.

Thank you everyone. You have amazed me in every way.