A day in the life of an Angelman Mom

My favorite day is Monday. This is when everyone goes back to where they belong. Husband to work, Jess to her program and I do the voodoo that I do. In less dramatic terms, my job consists of all those things people pay others to perform. Except for balancing the checkbook, mowing the lawn, oh, and working on the cars, my to-do list is everything else not named above.

Sure, being a stay at home mom sounds glamorous, and working mothers have looked at me with envy, but don’t think I’m eating Bonbons on the couch.  All I’m saying is the grass isn’t greener. In fact, my private pasture is rather isolating. At least my job isn’t as stressful as those who have to juggle home with work, however, it’s a FACT that they get paid better. (I get paid in hugs and kisses so…not complaining).

Though it may appear as though I make my own schedule, it really revolves around her health and the families needs. When Jess first started attending school, it seemed as though she was sick at least once a week (along with the rest of her classmates). We spent our spare time either visiting specialists or going to therapy, some of which I could only get appointments during the day. Even so, I was able to work part-time when Jess was in school and my boss did not grief me when I needed to be home. Not everyone is so fortunate.

As soon as Jess recovered from the flu that kept her home all last week, I came down with a cold. Disrupted sleep, long nights and being “hands-on”, my resistance was low and it was only a matter of time. When the nasal drip started, my paranoia, fear of what was to come, ran rampant. Fortunately, I only developed a summer cold. I felt lousy but it could have been much worse.

The first time I had the flu was years ago. It happened within a week of having my one and only flu vaccine. That strain of flu was rather violent compared to our recent experience. I remember asking my husband, “can you please stay home?”

“No, I can’t, I have meetings” 

Fortunately, my sister drove two and a half hours to help me off the floor and into the bathroom.

A day or so after I recovered, my husband came down with the same virus. The sweetest words I ever heard were, “I’m sorry, I had no idea, I was wrong”. From that day forward, he never ignored my request for help.

Today’s thoughts upon waking were about taking a nap. I took this as a sign that I needed more rest and canceled my obligations. By 8:30, Jess’s ride hadn’t shown. Her Program told me that staff had called out and they were short handed but a ride was coming. 45-minutes later, I learned that the driver had forgotten Jess and they were sending a car for her asap. At 9:45, her ride arrived. I’m not upset with the driver. She was picking up the slack and this wasn’t her regular route, however, in her rush she didn’t have a complete list and Jess was missed. Once a month they have early dismissal and, of course, that happened to be today. This is the first problem we’ve had with this group. The school buses were famous for not showing up at all. I’m happy those days are behind us.

As much as I wanted to rest, I ended up dealing with SSI (for Jess). Last week I received a second notice that I had missed an appointment, however, I never received the first notice. The letter threatened to end her services if I didn’t respond. All previous calls I made had gone into voicemail. The third time was a charm and did get to a person. It was then I learned my contact person only works part-time, so I was fortunate that she answered. A phone meeting has been scheduled and the problem resolved. That’s a win.

Even though today wasn’t great, we are all on the mend and Mondays are still my favorite day. As I read this, I realize my life is ordinarily boring and I’m okay with that. These are times I can catch my breath.

Leave a Reply

Your email address will not be published. Required fields are marked *