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!