2-5-2020

In November, my husband and I celebrated our sixth wedding anniversary. Every year I can’t believe how different our lives have changed in just twelve months. I find myself having a hard time enjoying these moments. It’s incredibly difficult to tune out everything around us and remember to celebrate our love for one another. Last year at this time Holden was not doing well at all and we had no help. We ended up admitting him into the hospital as part of the respite offered from our hospice program. It was a bittersweet evening. We were able to go out to dinner, see a movie, stay up late and sleep in without having to worry about getting up during the night or up early to start meds. But we missed Holden and we felt sad that we had to place him in the hands of strangers so that we could go out. I know these moments are essential for our relationship to survive and we are blessed to have the respite option, but it is not done without difficulty.

This year we didn’t have to, and we were overjoyed by that. Holden has a helper at home now and she is a wonderful asset to our family. She was able to come over from 9:30am to 9:30pm; yay!!

We spent the morning cleaning and after that we ventured out to our eldest son’s robotics competition. To anyone who’s never been to one, they are actually pretty exciting! But crazy busy and super long starting at seven in the morning and extending 12+ hours. It wasn’t how I thought we’d spend the majority of our anniversary but I enjoyed watching our son doing what he loves. It was hard on our hearts to leave before it ended, but we wanted to be able to enjoy a nice anniversary dinner. While we were at the restaurant I saw my niece’s grandfather walk in. I hadn’t seen him in quite some time and it was nice to be able to say hello. He generously sent drinks to our table and it overjoyed our hearts to receive this anniversary treat. Simple acts of kindness like this are incredibly appreciated by parents like us. We spend most of our days wondering when the next bad thing will happen. When the next new symptom will start, illness begin, drastic mood change, need for new equipment, and so on. When you spend every day of your life with that mentality, any kind gesture is as exciting for us as Christmas is to a child. 

After dinner we walked the streets of downtown Rochester to do some shopping. Last year we did this and it was so fun and such a beautiful winter evening. Apparently that was on a small business appreciation day so all the shops had extended hours. This year only a couple shops were open and I was determined to purchase something; a bag of microwavable caramel and a pair of socks was all I was able to walk away with.

Since we had the extra time we went to an orchard to have a drink. There is one near us that turned the upper level of their barn into a unique place to enjoy drinks and entertainment. It was cute and cozy and filled with beautiful Christmas decorations which made it a perfect ending to our evening.

We came home to a quiet house, Holden having already gone to bed. We settled onto the couch to watch a movie and within minutes Holden was awake, screaming and crying. This is commonly how our evenings turn, one minute things are calm and relaxing and then the next it’s pure exhaustion. It’s extremely hard for me to fully relax and enjoy the time when the kids are in bed because I feel like there is a ticking time bomb in the next room.

Is there a point to this entry? Not really, I’m just sharing life with you. I think it’s important to know that parents of children with multiple needs don’t get out often. And again, when they do, it’s not done without some kind of guilty or anxious feeling. People assume you are living the time of your life and being carefree while out, but the fact of the matter is we still go home to the same exhausting routine. 

Regardless of what each anniversary brings, as long as we are spending the time together, no matter where the day should lead us, then I am happy with that.