I worry, I do.

To Landon's Kindergarten Teacher, I am the mom of just one of the children who will sit in your classroom in just a few weeks. I want to tell you just a little bit about him and why sending him to kindergarten is so hard for me, his mom, although I know that it's hard for every parent. I know it's normal for tears to fill my eyes when I think about putting him on the bus and sending him to a school in which I cannot just peek in the window and grin as I watch him in circle time without him knowing. Landon has such a beautiful spirit. His mere presence lights up a room- well in my eyes it does. He takes on various roles and his day is focused on filling that job. Today, and for the past week, he has been "a police" and that we are "polices" (his dad reminds him that it is better understood when he said police man. I hope that you are able to get to know him well because he is pretty special. He wakes up each morning and yells "Mommy-- good moooorrrnnniiinngg!" I'm going to miss this because I'm pretty certain that I'm going to have to wake him up each morning. And, he calls for me over and over at night to delay bedtime. He does this only to me. Sometimes it's because bugs are on his pillow and he needs me to flip the pillow for him, or because he needs me to give him his teddy bear despite it being only an arm's reach away. He tells me he loves me and that he needs another hug and a kiss. He tells me it's because he has to go potty even though he went right before he went to bed. Cystinosis blesses him with the ability to squeeze some more pee out at any time. You may notice that his eyes get really big and he smirks a bit when he is embarrassed by the attention that he ironically was trying to get in the first place. He forgets some of his letters and begged me one day not to make him write "M" again. "I don't like M's Mommy, let's do something else," but he remembered that his aunt and uncle brought pumpkins to our house the first day that he napped in his big boy bed and that his aunt was so surprised to see him standing at the door. He was 2 1/2 then. I also want you to know that the fact that I actually can consider letting him buy lunch at school and that there are plenty of options of foods that I can pack for him is such a blessing. At one time, he depended solely on a feeding tube for nutrition and that his preschool teacher used to put a napkin in front of him to spit out the food that he put in his mouth. You may also be surprised to know that his first experience with school was traumatic for him and me. I remember clearly sitting on a kid sized chair in the hallway outside of his preschool class crying because he cried so hard that he threw up. I had to explain that he gets a feed right before school and that he only threw up because he was upset and not because he was sick. I knew it would be the first of times that I would have to explain how and why his needs are a bit different at times. I have to admit that I'm having a hard time because I'm so used to him being with me. I know. That's not unusual. But, to accept that I will not be the person giving him his 2pm meds through his G tube is something that I'm going to have to get used to. His dad and I have trusted less people than you have fingers to watch Landon and to give him his medicine throughout his life. I totally trust that you and the nurse will do a great job. There really isn't a doubt in my mind. But it's not going to be me and that is, well, something for me to adjust to. I worry about the bus... What if he drinks all of his water and needs more? What if he doesn't go to the bathroom before he leaves and has to go badly on the bus, a bus that will take 40 minutes to get to me. What if he has an accident because he can't hold it anymore. Oh, and his medicine has an odor that is noticeable at certain times of day. He told me recently that a friend asked him, "why do you smell all of the time?" We talked about it. I told him that it means his medicine is working and that if another friend says that, he can tell them. I worry.. I wish I didn't, but I do. So please know that I absolutely and totally trust that you will take great care of my boy. I will adjust and I know that he is going to thrive. But I worry. I do. With the warmest respect and regards, Landon's Mom