Our typical day and what our boys experience with CTD.
Thanks to our boys, our days can either be fairly predictable or filled with brand new experiences that we never saw coming. In this segment, I will try to show a typical day. On a normal morning, our three boys with CTD usually rise at roughly the same exact time every day. We usually have time to get up and ready just as our large video monitor shows one of the boys starting to stir as they “talk” to their brothers in high pitched squeaks and squeals to signal them that it is time to get moving. Once we see the boys stirring, we move rapidly to their room as we turn off feeding pumps, undo the latches to their large special purpose beds, and disconnect each boy from his feeding pump. Seeing their smiling faces and getting the boys out of bed is a highlight of each day. All three boys wake up ready to run and take on the world, so we have to be ready as well! Through a combination of carrying, hand holding, and some chasing, we all make our way into the main living rooms which serve as the nucleus for our little home. The two younger boys, Ezra and Simon, stay in one living room, while Elijah gets his own neighboring living room. Both rooms connect directly to the kitchen and both are protected by higher than average baby gates. Often times we start out the day with all three boys together in one room, but given Elijah’s unique style of play and his unawareness of both his size and safety, the boys typically go to their own areas in short order.
It is usually around these first initial minutes of activity that our nurses start arriving. Depending on schedules, each nurse starts to draw morning medications for “their” respective boys while either Jennifer or myself will take care of the meds for whoever may be without a dedicated nurse for that day. Next up are baths, getting dressed, and the administration of the morning doses of medication we just prepared. With each boy experiencing varying degrees of resistance to this whole process, and with each getting a substantial number of medications, our morning routine can get fairly interesting. It is not unusual to see a three or four-year-old at a full speed wobbly run as they seize upon an opportunity to escape at some point during this process.
Just as the last boy gets ready, the first of many therapists, or “teachers” are usually coming through the front door. The boys will each see between two and four teachers, every day from Monday through Friday. These amazing individuals will work on everything from the most basic of eating skills to helping the boys develop important cognitive skills like identifying or matching colors. Whenever possible, breakfast and lunch meals are turned into a fun learning opportunity as the boys further develop their eating skills. While Simon and Ezra are still mastering the basics of puréed foods, a few months after his tenth birthday, Elijah took his first steps towards using a fork independently.
The three boys and their teachers rotate between different areas of the house that each offer unique learning environments and equipment like sensory swings, adapted equipment, and other specially selected toys that both stimulate and teach. The boys are often doing their thing until late afternoon, but frequent breaks for medications, diaper changes, and playtime help keep everything fun. After all that hard work, Elijah loves to have some alone time to watch NASCAR while he rests his tired muscles. Simon and Ezra also enjoy some time relaxing as they either play with William, the unusually patient dog, or explore their favorite toys.
By the time dinner is finished and evening medications are ready to be given, all three boys are thoroughly tired. Each one of the boys genuinely enjoys being challenged, but like anyone else, they are glad to lay down and rest after a long day. Once pajamas are on and evening medications given, the boys quickly find their favorite spots on the couch and drift off into a deep sleep. After a few minutes, we tiptoe into their bedroom and start the feeding pumps. We learned years ago that even the slightest beeps from these pumps will awake the boys no matter how sound they are sleeping, so pre-starting is a must. One by one, each one of the boys must be gently carried into bed, carefully hooked up to his feeding pump, and softly tucked in before we latch their beds and tiptoe back out to take a few minutes to relax.
To be sure, this is a very general description of a very uneventful day. I would almost say that days which go this smoothly are unusual. Appointments are a reality and there are days when the boys just feel down, tired, or ill, and we let those days be opportunities to step back and take a rest. Admittedly, I have left out the additional steps that we take with our neurotypical boys. Omitting these steps, for their own privacy, means that I have left out the important contributions that they make on a daily basis, and while the full picture of our family isn’t really complete without telling their story as well, I will wait until they are old enough to tell their own story as I feel this will be an important part of their journey to adulthood.