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.


Cheryl said…
Thanks for being honest. As always, I am sending love. I understand that your journey has been and will be so very hard. You don't have to put on a brave face. I already know that you are brave. And I love that boy, Oliver.
rafaellecuona said…
I'm here with you Shannon and Matt. As you might imagine, I'm at a loss for words but do know I am with you.
ladybug said…

I found your blog many years ago and have followed your journey. I have even wept with you. I do not know what it is like to lose a child so young but I did lose my daughter at the age of 27. There are no words that I can say that can make it better but please know that there are people out here that you do not even know that are praying for you and your family as you journey down this path.

Lisa C.
laura_darrow said…
I have followed your blog since before Waverly’s diagnosis. My heart has always ached for you, but I recently became a mama myself and it aches for you on a completely different level now that I understand the intense love a mother has for her babies. We miss our babies when they are in their beds for the night. This love is so strong... it’s a longing.

Thank you for being honest. Outliving your children isn’t okay, and it’s so SO okay for you to not be okay.

Sending so much love.

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