This expression certainly has a very different significance in my family than it's intended meaning.
The enormity of my mission here strikes me this evening as I prepare simply to relate the events of our Monday. It is not possible to fully share the experience; so I remind myself that the idea is a glimpse of the special needs life. I also remind myself that this is a niche blog not a reference book by a professional.... and I may very well be the only one reading it. Well - maybe my son Ronan, my younger son, will one day read it as the easiest way to understand his family dysfunction. But hey, we all have dysfunction. Perhaps I will simply not add any more concerns to the day and just make some "notes to self" for more information later.
Rising with Riley after a night of Riley and then getting out the door with Riley... more on that later. No school today. First appointment of the day is 8:30 am 45 minutes north with the Pulmonologist, Dr. B. Always take the first or second appointment of the day... more on this later. On this very humid morning, Riley was dressed lightly. As we headed north a heavy downpour slowed us down and drenched us while unloading from the car... more on this later. Should have called this post "More on this later." We had a new experience this morning. I put together his wheelchair and our supplies underneath the building entry while a pretty Latina unloaded her three young boys into the same space as quickly as she could to keep them dry. Normally, most people pretend the child in a wheelchair is simply in their imagination. As I brought Riley through the rain, she whipped a Whinny the Pooh blanket off her baby carrier and threw in over the wheelchair before I could put him down exclaiming "He'll be cold!" She touched my heart worrying over my son while her own waited. She eventually accepted the blanket back when everyone made it inside. I'm sure she has no idea how exceptional she is... but I will remember the few moments I was near her.
Time to go through the details of my day a little quicker. They are important because the difficulty of getting through a special needs day is so huge to me even after all these years. However, it's a niche blog and I have time. There was a plan for the day. As always it changes. Breakfast for Riley in the exam room... I feed him when and where I can. Today I want to recognize how greatly I appreciate the professionals caring for Riley, though sometimes I do take issue:-)... more on the later. Dr. B is wonderful with his gentle probing to ensure he learns all the detail he needs and has never failed to take his time to educate me further. Today's result: stop Pulmicort treatment for the summer, Riley's lungs are clear! Thank you, thank you, I will. Second appointment of the day at 11 am, we move on the Occupational Therapy (OT) with the beautiful and competent Miss J. She is amazing and I learn from her each time Riley and I sit on her mat. I am grateful for Miss J.
Somehow during the day with little thanks to me, Ronan has a play date and even tennis lessons. Daddy is looking out for him! Riley has many more activities on his regularly scheduled Mondays. The Chiropractor and Horseback Riding are still left. However, his little body doesn't always cooperate. As soon as he made it home and began lunch he began vomiting. Unfortunately, he cannot warn us and this is an event in itself. Vomit is one of the things that pushes my buttons due to our history... more on this later. Eventually he seized for 4 minutes... oh, must remember to log this event. Cancel everything! That's how it goes.
Tomorrow is the dreaded IEP.
This was not a day to write home about. It was a day in the Life of Riley. More on that later.