12.28.23 Hello again

Now that Ed has broken the silence, I think I am ready to write again. Both Ed and I have been struggling with overwhelm, depression, and even physical challenges. This is taking its toll on our minds and bodies. Around and around we go through scares and roadblocks and stabilizing again and then around to another set back. The ride on a carousel that has lovely views, but terrifying turbulence, is going too fast for comfort, and never ends. 

This past month has been another round of “normal” for Aimee on the roller coaster. Today she is spending the day in the infusion clinic at children’s. 2 days ago she finished 14 days of a strong IV antibiotic. She had her first social outing in years 2 weeks ago to watch Caleb in the church Christmas play. She needed an increased dose of her fentanyl patch to cover her pain levels. Her j-tube (medication tube) broke late at night and we had to work with hospice to keep her out of the ER. The work around caused some trauma, including rectal bleeding and muscle tremors. We were able to get an emergency appointment after 36 hours to have the tube replaced in Interventional Radiology thankfully. She got to spend time sitting on the couch a few of her stable days this month and 2/3 of the times she had no pain. She had multiple weeks without her night nurse. And there have been several respiratory bugs going through the house. Another month with Aimee.

I could go on with the drama that we have also dealt with for machinery and medications this month. Each week we are either in the middle of a wave, trying to breath after the wave, or dreading the next unknown source of one. You can see why it makes it hard to communicate here, because I barely know what to say. And when I do, it feels full of complaints. Thank you for baring with that. Aimee is okay. She is home. Also, not okay. 

There is lots of good here too. The younger 4 kids and I take Fridays to either have adventures or learn with friends in our small co-op. We have had laughs and sweet moments. The kids keep us smiling and hopeful. They give me a reason to cook real food and to make a to do list and to look forward. Aimee has days too where she is alert. She will look right over at me or give us a sweet smile. On the good weeks, we gain traction and breath and maybe start to make plans. On the rough weeks, we go from task to task like machines. Here we are. Recovering, but never recovered. Stable, but unstably. Smiling, but full of anticipatory grief. Flippant, but masking anxious worry. It never ends. We don’t want it to end. But also, are hanging on for dear life. It’s no way to live, yet it is also real life. 

Now, after that tumble through emotions and confused thoughts, here is a photo dump of birthdays, halloween costumes, and adventures. Sweet moments with our family living as best we can on the carousel. 

-Aimee and Louisa snuggling together-

-Louisa turns 4-

-Kayaking with Louisa and Alyssa-

-Zoo with cousins-

-Adventure to River Meadows Park- 

-Sibling movie snuggle in Aimee’s room-

-Kayaking with Caleb and Louisa-

-Taking the kids on their first ferry ride-

-Adventure to Mount Erie-

-Halloween costumes-

-Walter turns 6-

-Elliot making gnocchi with his own homemade ricotta-

-Visit from Santa and reindeer-

-Adventure to Padilla bay-

-Caleb turns 12-

-Go fish with Louisa-

-Quiet reading time together-

-Making tacos with Dad-

-Christmas cookies with Mom-

-Today in the infusion clinic-

-Christmas Day cares with Dad-

-Christmas Eve carols by the piano- 

-Christmas presents with the DeVoe family-

-Aimee’s new elf Christmas jammies-

-Christmas Eve stockings-