Happy 4th of July
7/4/2020
For most people the 4th of July means getting together with family and friends, BBQ’s, swim parties and firework displays. But in our home (and I’m sure in the home of other families of chronically ill children) it is a little different. For us, it means separation. One of us will be hanging out with the older kids and the other will be caring for Holden. This isn’t so bad if we are all home because we can normally swap roles as needed to allow both parents to enjoy the holiday. But it’s not the same when we choose to leave the house. It is not an easy decision because we would prefer for all of us to be together but it’s also nice to be able to get out and celebrate with others.
Holden can’t leave the house on 4th of July, it’s just too hard. First and foremost, he absolutely can not tolerate the heat. He gets angry, uncomfortable and this year he seems to change to a pretty shade of red when out for more than fifteen minutes. It’s not a sun burn either, it really just is a weird reaction his crazy body does. On top of that, leaving for an extending evening requires the gathering of many supplies; G-tube extension set, feeding bag, tube feed formula, cooler, syringes, medications (pills and liquids), IV pole for feed, rescue meds, VNS magnet, green pads for bathroom accidents, thick blanket to lay on if not tolerating wheelchair and multiple bags to carry everything. And don’t forget all the regular “baby” supplies; diapers, wipes, multiple sets of clothes, and simple toys for entertainment. Holden does not sleep well, and when those evening meds do kick in, you want to get him in bed and not disturb him or he becomes a terrible cranky mess. So obviously fireworks would turn him into a mega monster and then no one could enjoy themselves because you have some special kid screaming his head off. It makes for a pretty stressful and unenjoyable experience.
We are choosing to separate this year. I will miss the casual evening at home doing little fireworks with all of us present. But I’m also super thankful for the spectacular display of fireworks that we will be enjoying at my sisters house as well as my husband’s willingness to stay back with Holden.
I think this year, more than ever, people will be appreciating and enjoying the holiday on a whole different level. So if you are blessed with the opportunity to be out celebrating with your family and friends soak it up and enjoy!
Happy 4th of July everyone!