The little things

Last night I cried tears of anger (a different story for a different platform) tonight I cried tears of love

Jillian is a type A person. Things need to be just so. She is very intentional with everything she does. Sometimes it can be frustrating (like when things need to go back in the packaging they came in and the packaging will not longer hold the object because it is packaging and it has served its purpose and wants to retire to the recycling bin) but other times it is really helpful (toys go in the bins they came from, she has steps to how she does things)

Right now her big thing is trash. If it is something that she knows needs to be thrown away she can not handle it being out of the trash can. The thing is that we don't allow her to play in the kitchen so we have gates that seal off our living room/dinning room from our kitchen. There is multiple reasons why she is not allowed in the kitchen without and adult, and she respects that rule and is fine with it most of the time.
Since our garbage can is in our kitchen she can not get to it. So if she thinks something needs to go in the garbage she throws it over the gate. I frequently don't look down as I open the gate making what I step on rather interesting sometimes. Most of the time I don't mind her piles at the gate as I know it is her trying to clean up, but sometimes when you get especially fun things in your foot I get a little annoyed.
Tonight as I opened the gate to the kitchen there on the floor was her used Kleenex. Tonight it made me cry. I know, it is a simple dirty Kleenex on the floor of all places, but it was the reminder that there will not always be little gifts left for me to throw in the garabge on the other side of the gate. Someday we will take the gates down and she will be able to go to the garbage can, someday I will probably be wishing she made any attempt to clean up after herself, and someday she will grow up. But for now I have the gift of finding Kleenex on my kitchen floor. I have the gift of her pulling my hand when she wants something. I have the gift of her cuddles as we watched Lilo and Stitch tonight. She blesses us with so much.
Sometimes I am thankful for the little things that remind us of how great the people around us can be, even if what they leave for us is a dirty Kleenex on the floor.

Curled up watching Lilo and Stitch tonight

On a side note, my one boss and I were talking the other day. She use to be a speech path and we were talking about Jillian's therapy. Through our conversation the question came up that might some of her fatigue with normal two year old things be a lack of oxygen. We always take her pulse ox either while sitting in a doctors office (after she has taken a long car ride) or when she is sick. We don't take is while she is active. Her pulse ox at her last pulmonology app was 95 and she had been sitting for over an hour. I know a lot of her fatigue has to do with her low muscle tone and her muscle issues but I had not though about the oxygen part of it before. I am thinking that is something to ask her doctors and therapists. She has been needing more breaks again during PT and has been taking more time sitting at school.

Her new friend Hucklebee. We got him yesterday at Target. He is a game about following directions and it incorporates at lot of things we do in therapy in a new way. She is in love with him and we have played the game 3 times already

Jilli wore purple today in support of all of her friends with epilepsy! 

My awesome hubby bringing Tubie Friends to the post office for me. This is the perfect bag to hold 4 Tubie Friends.