Carter Cates: FirSt weeK of sChool ~ ReCap

well, we did it! Carter and I survived the first week of school. The first day was very excited and he handled it like an old pro. With his backpack in tow, he headed into a new classroom filled with lots of colorful activity tables and new books. He quickly figured out he needed to put his back pack up and found his cubby hole complete with his name & a backpack hook. He thought that was very cool! He next needed to put his lunch box in the laundry basket they keep all the lunches in. He wasn't so sure about giving up his new Buzz Lightyear lunchbox. I am surprised he did let it go because he hadn't been without since we bought it! But he finally watched it walk away with the aid and headed to the table where puzzles were waiting for each child. With all the chaos, it was hard to tell how many children were in his class and what their disabilites are. I am pretty sure there isn't another multi-organ transplant kid! We actually do know one little boy and I am excited he is in Carter's class. I guess as the year goes on we will get to meet the other parents and children. This whole world of not knowing is hard for me. Who are these kids? Why are they in PPCD? Sean and I have become such information nuts that it's hard to just drop him off and not see the whole process. When Carter was in the hospital, we walked all the way to the door where they would have to tell us... no parents from here. The minute Carter gets back from a procedure, we are brought back to the recovery area. I make it quite clear, I have to be there the second he gets there. The two hospitals we work with are very aware of this and accomodate nicely.... the school- not so much. I drive up to drop him off and they run out to get him. In the rush of the parking lot, I barely get a kiss in before he is whisk away. In the afternoon, there are no rounds to go over every lab and the plan... only a note stamped with one of those orange bingo stamps indicating he did the sensory table and went to the playground... sigh. Not a lot of information. I am adjusting. School is a whole different world. When he goes to Prestonwood, I do get a little more information as I drop off and pickup at his classroom. but only a second as the teacher has to talk to all the other parents too. I guess by the time a normal child is 4, a parent has already been through some "letting go" activites and this isn't that big of a deal. Although.... there were some serious tears from moms on the first day. I am proud to say I didn't cry. I thought I would. Everyone else thought I would. I think I was just SO excited for him and to have the chance to experience all the stuff I had watched everyone else enjoy- I was happy. And maybe the 3 hours I cried when we took him to Sunday School for the first time, was my moment!

We did have two tough days last week. His first day at Prestonwood was cut short when they called to say he had a watery diaper. Any child with diarrhea of unknown cause has to sent home. Let me just say, my heart about stopped when my phone rang and I saw it was them. The nurse quickly said "everything is ok". Then she told me about the stool. It was not his normal, so I loaded myself up to go get him. I felt so defeated. Was this going to work? I explained to them that Carter won't have normal stools like other children and we may have to tolerate some changes based on a new schedule. They were good with that. I really like the director there and the nurse was an ICU nurse for many years. I know they only want what is best for Carter. On Thursday, at Prestonwood, he freaked when I went to leave. Maybe some of the new and exciting had worn off. I waited around the corner for 15 minutes and the teacher came out to say he was better. Better? just better? I had to take my "better" and leave. He wasn't crying when I picked him up so he stopped at some point. Friday was also a "No mommy" day. Lots of big tears and pulling. I was all I could do not to run back in and grab him for a quick escape, but I didn't... I think there are laws against that. I did cry all the way home thinking about him crying and how awful to watch me just stand there as they forced him inside.... ok, it makes me cry now! Sniff Sniff. But again, he was happy when I picked him up! Adjustments. We are all making adjustments.

I think the hardest adjustment is going to be me. For four years now, I have gotten the privledge of protecting him and keeping him all to myself. I get to explain to people why he is so small. I get to tell his story and watch them marvel at the miracle he is. There is a balance that must exist between helping people understand where he is coming from, what he has been through or just letting them think he is normal and treat him like any other child. I don't where that balance is. He is not like any other child... he is MY child. I want to protect him from anyone who thinks he is different. Letting school into our lives makes that very hard. I know how smart he is. I know he can do it. He just hasn't had the chance. I can't tell his whole story in the 3 seconds they give me. Letting others in is hard. Listening to them say he can't do this and he can't do that is going to be one of the hardest things for me. I guess because I always chose to focus on what was going good. When things were at the worst... we might have one lab out of 100 that was normal. I wanted to talk about that one! Maybe I am delusional. Maybe his smile is so big, I can't see what others see as deficit. Maybe I'm just a normal mom who doesn't want to hear that something isn't normal. It's just hard. And I am trying to see it from another direction and believe these people are here to help him and not hurt him. I know they want to see him succeed. I know they want to hear him talk. I know they want him ready to conquer kindergarten. I know they are learning him too.

I just have to adjust.... there's that word again.

One more thing I want to add

then we will talk about some fun, non-crying stuff!

A few weeks ago, Sean rented the movie Temple Grandin. I didn't really want to watch. I have lived in the world with sick children. I had heard about this movie. Actually heard good things about it. But I am always leary of movies that portray people with disabilites. Are they going to make fun? Are they really going to understand? Well, I watched it. Cried through most of it. But the best part of the whole movie was when Temple's mom was trying to decide whether to leave her at a new school and at the last minute, she ran out and was going to grab Temple and leave. A teacher stopped her and said, "I understand her abilites, I understand she is different." And Temple's mom replied, "She is different, but she is not less." yep, I lost it. Carter is so much and his potential is bigger than all of us. It's just hard to send him out in a world who might not understand he is different and might not realize.... he is not less.