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-

12.26.23 Guest Blogger

Guest blogger: Ed

Merry Christmas, family and friends. I can’t believe the year 2023 is almost over. Time certainly flies by faster every year it seems. I’m not really sure where to begin. It’s been such an up and down year and yet it seems that we continually land back where we started. Aimee has had happy joyful days and sad painful days, all of which blend together week to week. 

We meet with her GI doctor every 6 weeks and every time as we go back through the numbers, of which we record every 4 hours, every day and every month, we average out the 6 weeks and the numbers are almost always are the same. Even though we have weeks of crazy high output and sometimes dribbling low numbers, in the end the average is the same? But this really sums up where we are at, ridding the carousel, up and down, round and round every day. 

I think every week I could write a different blog post saying how hard the events have been that week and then follow it with one about how well things are going. This had made it difficult to communicate and explain where we are at. These last couple of months in particular have been hard emotionally on both Rosa and I. Typically it’s one or the other and we help to carry each other, but when it hit us both it’s kind of leaves us a bit speechless …. Even now I feel a loss for words. 

This has been just such a long, exhausting journey and yet we have to just keep swimming. Aimee continues to fight to be here so we are going to keep fight with her. Know that from the outside it may look as though all is good and it might even be on that given day or moment, but it’s a fight keep it all together. So many times one thing goes sideways. Even a small thing like a prescription gets canceled for no reason or the wrong IV pump gets used and it takes the wind out of our already exhausted sails and we struggle.

For those of you who care and pray for us please continue. We need all the support we can get and know that if you don’t hear anything it might be that we just don’t know what to say. We are truly grateful for the family and friends that we have. Merry Christmas and Happy New Year!