It turns out my last post on this was very therapeutic. So, here is another post about our life. Specifically, about a normal school day with Lyra for me. With Ranen (my 5 year old), I basically check his backpack for anything growing, rocks, sticks, and throw in new snacks. For Lyra, it’s a whole different ball game.

After picking her up at school, the first thing I pull out of her backpack is the dry/wet bag of dirty laundry. Then I remove the ice pack from her medication cooler and place that in the freezer, then wash her medication syringes. Lastly, I pull out her communication book. This is a book that lets me know about her day, since she can’t tell me what she did. It contains all the daily information I need to continue her care for the rest of the day. I look for:

• When her diaper was changed, and what was in it.
• When she was given water and medication through her feeding tube
• Any notes about needed supplies, or concerns teachers/paras may have
• What therapies she did that day
• What activities she was involved in that day

This information lets me know about Lyra’s immediate needs when we get home. After school, I often do a load of laundry with all of the clothing, bibs, and washcloths that came home with her that day. I need to make sure I give myself enough time to both wash and dry those items so that they can go back to school the next day.

In the morning, I double check the communication book and add any notes for her teachers (ie, if I have to pick her up early for an appointment, or if she hadn’t slept much the night before). I make sure she has her talker (communication device), the communication book, replacement extra clothing, replacement bibs/washcloths, pre-dosed medication in her special cooler, emergency feeding tube supplies, and any other supplies that the school has indicated they are running low on. Needless to say, her backpack weighs a lot and she can not carry it herself. Sometimes she even has an additional bag because everything won’t fit in her backpack. I then drive the kids to school where I am met at the car by a para educator who takes Lyra, and all of her stuff, into school for the day.

While Lyra is at school, I have to always be available via email, text, and phone. I get daily communications about incidents during the day, paperwork that is needed, and/or additional planning to meet her needs. I hear from teachers, the school nurse, therapists, and/or school administrators every days (often more than once). Even without her being with me, I still need to be available to manage her care from a distance.

At the end of the school day, I go to pick the kids up and the cycle starts again. Many days I wish I could fully unplug, even for an hour or two. However, it’s just not in the cards.