Matt and I have finally uttered some scary words to one another. I have been mulling them over for weeks. As they swirl around my head, my chest begins to heave with tears and my ability to breathe deeply becomes a struggle. When you are partnering through trauma, you try to protect your spouse. We both have friends in our lives who are willing to absorb some of the hurt. We tend to see saw emotionally. When I am up, he is down and visa versa.
We are both down. We are both sad. And it was time to enter into that sadness and speak frankly with one another. We are worried about Oliver. We are terrified about what the next year will hold. Alarm bells are going off in each of our minds and we needed to express it honestly with one another. It is not an easy conversation to have, but we have done it before.
I am not being an alarmist or waving the surrender flag. However I am also not going to ignore the fact that our little boy is dying.
This requires a shift. A shift in the way we manage his care, choosing pain management and quality of life over anything else. A shift in the way we interact with the world around us. I am finding my voice of honesty once again; choosing bluntness and vulnerability more quickly. People can choose to enter into our lives or not, but when asked how I am doing they can expect truth. I am trying to accept help once again, instead of putting up my armor of capability. To allow people the opportunity to carry a bag or push Oliver's chair, because it is their way of connecting and supporting.
I suppose this post is my attempt at saying we are not doing well. We are hurting. We are worried.