Trigger warning ⚠️ We are opening the package that contains the suit my son will wear in his casket 😭

Six months ago, I sat in my living room with my hospice team and we talked about something no parent ever imagines having to plan: my child’s funeral. I told them I had already picked out a suit for Lee. With how rapidly his health was declining, they told me to go ahead and buy it. Have it ready. Because they truly didn’t know how much time we had left. So I bought the suit.And now it’s August… and he outgrew it. I got to retire the suit they didn’t think he would live long enough to outgrow. I know some people don’t understand why I share this part of our journey. They call it morbid. They ask why I opened the suit in front of him, why I talked about funeral arrangements around him, or why I would even prepare for his death while he is still alive. Because this is our reality. When you enter hospice, these are real conversations. What funeral home do you want? What cemetery? What are your wishes? These things are discussed so the social worker and hospice team can help you prepare ahead of time. Adults plan their own funerals every single day. Preparing for death does not mean you’re wishing for it to happen. I am preparing because when that day eventually comes, I don’t want to be standing in the deepest grief of my life trying to make a thousand decisions. I want those decisions already made. I want everything exactly how we want it. I want it perfect, because he deserves nothing less. There is nothing disgusting or wrong about that. Death shouldn’t be taboo simply because talking about it makes people uncomfortable. Everybody is going to die. And when you’re raising a child with a terminal illness, you don’t have the luxury of pretending death isn’t part of your reality. If you aren’t living this, I don’t expect you to completely understand it. But maybe sharing our journey will help you understand a perspective you never had to consider before. Lee’s journey belongs to him and to us. We are choosing to talk openly about terminal childhood illness, hospice, anticipatory grief, death and everything that comes with it. So here’s to six months since I bought that suit. And here’s to another six months. And another. And another. Because my baby outgrew the suit. 💙