9.6.22 End of the summer update

Aimee is doing quite well right now. Right at this moment as I write this. Every day is different, with ups and downs, highs and lows. Some very sad, painful times, but still more calm ones. She is currently finishing her 4 week cycle with the inhaled antibiotic, which really helps to keep her trach infections damped down. When she is off of the antibiotic for 4 weeks, it is a struggle with the round the clock intensive care. She is too exhausted during the infections to interact. So, we are savoring these days with her little smirks and occasional beautiful smiles. They really keep us going. To know that she is happy, comfortable, and home brings such contentment to my own heart. 

We had a few highlights this past month. We celebrated our 17 year wedding anniversary as a family with a fire and s'mores. It wasn’t glamorous, but it was sweet and memorable. Any moment that includes all seven of us feels weighty and important. It is tempting to wallow in the disappointment of what we can no longer do. We can no longer go to bed together at night or go on a date. We can no longer work together outside or grocery shop together or take the kids somewhere fun together. Yet, we CAN work together caring for our family and doing our best to hold on through the storms together. So grateful for Ed, for us. 

We also celebrated Louisa’s 3rd birthday!? I KNOW! How can it be!? She phenomenal. And wild. 



We were able to enjoy several different visits with family this month too, which we all loved, but it is especially a big deal for the kids. Aimee wasn’t awake very much to enjoy many of the visits, but she did have her own private concert and her window open to hear cousins playing. 







We had the big heartbreak last week of having to put down our wonderful milk cow Dottie. She had been with us since she was a calf 7-8 years ago and was the backbone of our little homestead. After her calving last month, Ed worked so hard for weeks to nurse her back to health with the help of a vet. Yet, in the end, she could not be saved. Such an exhausting, emotional experience. And so disappointing. Her bull calf Ernie is doing really well.

The weeks with the cow, particularly the end, really brought up all of our emotions about Aimee. We have struggled this past week to get our feet back under us and feel steady again. Life is not forever. Each day brings a new mountain to climb or valley to cross. We aren’t guaranteed good weather and are not promised how long the journey will be. We must keep looking forward for signs of hope, breaks in the clouds, the wayside dandelion, or the perfect fallen tree to rest. Onward we go. 

As we do head forward, we find ourselves with even less help than when we last posted. Our hopes for another nurse did not materialize and our other nurse left. We do have one wonderful night nurse, but she doesn’t work often, 2 nights this month. We are trying to sort out how we can possibly do more with less help and little sleep as we add back in homeschool and Ed continues to work. I love teaching and learning with the kids. I love the intentional time together. What is it that can give to make room for this added focus? It feels like everything left is too essential to cut out. Every one of these days I am so grateful that Ed and I worked really hard to set up systems for Aimee’s care. We are on the same page and super consistent with each detail. And we must be. This is crazy complicated.

At least we do have Louisa to help.

School has begun, but we did finish the summer with a few outings. One of us stayed home with Aimee and the other went adventuring with the younger four. Ed took them to the fair. I took them to the zoo and to the beach with friends. We have these memories in the midst of the uncertainty of our day to day life. 

Thank you for cheering us on as we continue on the journey.