I Wish We Knew

Oliver had his first (half) week of school. We are so fortunate to have a supportive school. The moment I brought him in, he was surrounded by staff members thrilled to welcome him back for his sixth grade year (and ninth at his school). I had sent them an email the day before updating them on Ollie's many changes over the summer and like always they are ready to face any issue along side of our family. He is adored.

We met with Julia, our hospice nurse this morning. I love that she comes over and gives him a quick once over to ensure that all is well. Oliver is continuing to have GI issues. We aren't sure if this is a change we can manage with a formula modification, slower pump rate or reflux medication. Or are we dealing with a slowing system with motility issues. We are trying one thing at the time, hoping we can find the magic fix.

We are thankful to have a community of friends around us who heard my cry and tended to our family. Meal are being delivered and prayer is being organized. Friends are at the ready to jump when I signal. Pastors have visited. 

We are in a tenuous position. Oliver is terminally ill. He has had a rapid decline over the summer. He is continuing to struggle and we are waiting with trepidation. Will he stop sliding down the slope and reach a plateau or he is going to plummet off of the cliff? I wish we knew.

I will continue to listen to my intuition. Matt and I will continue to talk openly about each choice we make to ensure Oliver maintains his comfort and dignity. We will continue to share our journey, even when we are unsure where the road is going to take us.


Anonymous said…
Thinking of you, Oliver, and your family.
papillon said…
You are in my prayers.
Anonymous said…
Be Brave you guys are truly amazing

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