We met with the hospice folks on Sunday to figure out what we wanted, and then yesterday, Patrick came home.  We had medical transport bring him home rather than doing it ourselves because I didn't want to be freaking out the whole ride.  I spent the weekend getting the house ready (when my world is chaos, I gain control by organizing my house--you know this by now).  

Home! (pic)

Phil did the work of packing up Patrick's room at the hospital and saying our goodbyes to everyone.  It was so hard for me because I didn't get a chance to say goodbye to the people who have been such a huge part of our lives these last 10 months.  I didn't have the opportunity to tell them how much their care--not just of Patrick, but of us--has meant. Thank goodness for Facebook.  I started getting friend requests from some of his nurses and, once we were friends, I scoured their friend lists for other caregivers I recognized and sent friend requests. I was worried that some of them might think it was weird that a patient's mom was friending them; I was so relieved when some of them expressed gratitude that I had reached out to them so they could follow Patrick's progress. The number of lives he has touched is vastly more than I can even comprehend at this point.  He truly is such an amazing little boy.

I was worried for a few days that Patrick was not going to make it home.  Now that he is here, and I have gotten to hold him, play with him, snuggle him, and watch him play with his sister, I am certain we made the right decision.  I would not trade these moments for anything.  Everything we get from here on out is icing on the cake.  I told him that, if he was done, he could go, but that if he was willing, I wanted him to stay through Sunday at the least since we have tons of family pouring in on Thursday for meeting/playing, and photographs, and have tentatively scheduled an open house on Sunday for folks to get a chance to receive their own Patrick smile in person.  So far, so good.

Homecoming was a little rough.  There was lots of paperwork, lots of medications, lots of medical equipment moved in and out as providers were changed, lots of things to learn about the new equipment, and lots of expectations to manage.  We came up with some great solutions for some of our concerns, and the hospice nurse stayed overnight the first night.  Our friend who watched Patrick at night before has also returned to watch him again.  

Sibling snuggles (pic)

This overnight help is even more beneficial because Mira has been waking up at night crying. This has been a real struggle for Mira. She was actually bouncing with excitement when I picked her up from daycare yesterday. She had been telling everyone her brother was coming home.  She loved seeing him, and has been quite wonderful--sharing lovies, giving him snuggles, and soothing him when he cries. At the same time, she is frustrated that she is no longer the center of attention and is pressing boundaries and getting angry/frustrated and crying a lot.  This evening, she didn't want me to leave after putting her to bed because she was afraid I was going to disappear.  This is probably a product of the fact that we have this many people in the house--and both parents--it's followed by one of us leaving for Detroit. The last few times Patrick had issues, I left in the middle of the night with him. I have no doubt she is afraid that will happen again, even if she is unable to articulate that fear.  In case you were wondering, grieving is hard enough without having to manage the grief of a three-year-old, too.

This is why we did it (pic)

Fortunately, we have lots of wonderful people who are helping us with this. We have let Mira choose whether to stay home or go to daycare and, not surprisingly, she picked staying home.  Her godmother has been wonderful, spending time with her so we could get naps today. We have been blessed with donations of time and resources in the form of: yard work, meals, groceries, balloons, blankets, toys, overnight help, toddler distraction, calls, e-mails, ears, photography, messages, and love. I simply cannot tell you how much this means to us.  I have been so worried, wondering how we are going to do all of this. Planning a funeral for a 10-month-old is a pretty surreal experience, and one I hope none of you ever face. Thank you for adopting us as your own and helping us get through this. You have my eternal gratitude.