I don't think I have ever been so glad to be home, but at the same time, so incredibly sad. We got home last night around 7:00. One of my sweet friends picked up the dogs so that the house would be quiet. (You know you have amazing friends when one of them drops everything, picks up your 2 dogs to add to her one, has the most adorable 1-year old baby, and brings you dinner. Seriously, amazing.)
On the way home from the hospital, Matthew and I realized that it will be our last car ride with James. He had to come home in the Moses basket due to the way his car seat would put pressure on his neck/brain. In what world do I let my son ride in car without a car seat? I think Matthew actually drove slower home from Children's than he did the day we came home from Baylor with James. I said that we were driving home precious cargo- just like we were 8 months ago. I can't tell you how many times I have said that phrase now. Too many to count. Because we truly are carrying with us precious cargo.
We sang songs to him the whole way. I am so sure that he would have rather had silence or the radio because I'm pretty sure we sound like dying cows when we sing! Poor baby. But nonetheless, James didn't fuss a single bit. We took extra time to drive around the neighborhood a few times, reminiscing about walks we had been on and what we had seen on some of the streets.
When we arrived home, we had dinner waiting from sweet Toya and Terry, and Sprinkles cupcakes from Uncle Patrick and Aunt Vanessa that said "Sweet Baby James". It's funny what things you think about first when you realize the milestones you are going to miss. I realized sometime yesterday that we will never have a birthday party for James. Just a few weeks ago I was pinning on pinterest my inspiration for his first birthday party. Giraffes of course. My, how life changes in an instant. And so my Mother in law ordered James a Giraffe cake and we will celebrate James tomorrow instead.
And so James had a great night. The hospice nurse met us and went over all the pertinent details of James' care with us. He has a port that was put in while we were in the hospital- 2 weeks ago? I can't even remember at this point. All of his medicines will be given through his port and we have a portable pump that is constantly giving him TPN (nutrition). James nursed one time yesterday before we left the hospital. James had not nursed since Saturday. I think he must have had a seizure or something else, because as of Sunday he has acted like he didn't know how to nurse. I had been sobbing yesterday morning, thinking that he had given it up for good. Maybe James did it one last time for me. Or maybe he will surprise me and do it again! But either way I cherish the time yesterday to nurse him. Some of you may not understand that bond that is created when you breastfeed your baby. But can I please tell you that for me, it was the most special experience. (I know for various reasons people cannot breastfeed or choose not to. It's a personal decision and you have no judgment here. For me, it was a wonderful experience and I would encourage you if you are on the fence to try it.)
So James came home with 6 medications to be given in various intervals and that can/cannot be given together. I've learned about flushing the tube in order to make sure that no interactions exist. I learned how to give doses over a slow push. I know how many pushes of ativan to give him in case he has a seizure over what intervals of time.
James did have another seizure this afternoon. His seizures look different than a typical epileptic seizure that most people think of, so they are hard to classify. I was so scared. As the tumor grows, the possibility of more seizures increases. The sodium balance should keep most of them away, but it is a most likely fact that he will continue to have them.
We spent the day with family and friends. Most of the time James preferred to be lying on his side on the floor, so we laid on the floor next to him. We read books, sang songs, and even played with one of his balls. Matthew and I took him on a walk tonight (once it finally cooled down to like 90 degrees). James seemed to enjoy it, and we absolutely loved being able to do something normal with our sweet boy.
We are at peace with our decision to bring him home. When we talked to the doctors some more yesterday, they said the chemo would have only granted us 3-4 weeks more with James and he would have been in constant pain due to the drugs administered. It truly would have been selfish of us to ask him to do that for us. So we chose quality over quantity time.
Today has been a great day with James. That doesn't mean we don't cry- we definitely have our fair share of crying. We weep. We grieve the things that will never be. But we enjoy the time we have with our precious baby.
I think when you become a parent, you hope for two things for your children. The first is that your children know that they are loved. And James is so desperately loved. Not just by his family, but by so many people around the world. Our other hope is that James would find his calling in the world and live it out. My word, has he found his calling. James' impact on the world is far greater than mine.
So, what else can I ask for? I spent the day with the light of my life, and God gave me one more day with him. Glory to God, who blesses me beyond belief.
Thank you all for your heartfelt comments, emails, and texts. We are so grateful for your love of sweet James.