a rough night

I'm still trying to get through all the red tape to get Jett this appointment at KU medical ctr. He had a really bad episode last night.  He's been wetting the bed for the last month, probably 3-4 days a week, and it seems to be getting worse.
Then he will wake up crying and I will have to change his jammies and sheets and give him a bath.  He has woken up like this several nights a week for the past 4 or 5 months, but until this past month it has been to tell me that he needs to go potty and have me help him take his jammies off.  I consider these nighttime awakenings "night terrors" because he will be fussing like crazy, sometimes crying inconsolably, but mostly just fussing and whining inconsolably, and he's being so unreasonable that I question whether he's really awake during them.  He gets so upset. It's hard to explain but it's a panicky-crying-whining-fussing-tantrum-ish episode, and he's so upset when he's doing it, that I just have to rock him and rock him until he calms down.

Last night was the worst one yet.  Remember I said that Jett has never in his life gotten angry.  But last night he was closer to anger than I've ever seen him.
I was SO tired when I got up to change his wet clothes, and I didn't want to give him a full bath, I just wanted to rinse him off and get him back to bed so I could go back to sleep. I put him in the tub and poured warm water over him with a pitcher, then took him out and dried him off. He was already upset and he got even more upset because I wouldn't let him sit down in the bathtub.

 I have learned that it's best to listen to the things that he wants and does not want.  He's not a spoiled child at all. The things that he asks for with intensity are the things that he needs to feel comforted and content. So I almost always grant those requests. I've learned that by listening to what he needs, and accommodating him, he doesn't need quite so many things day-to-day. He is more content and will accept it when I say no to other, less-important (to him) things, if that makes any sense.  So when he is having one of his episodes at night, I try to listen, and be respectful of what he needs at that time, and he seems to calm down faster that way.

But last night I was just so tired and didn't want to sit there while he took his time in the tub, so I didn't. He was freezing when I got him out of the tub, and so I wanted him to get his jammies on quickly, but he was fighting me and wanted to stand there in the freezing cold bedroom with no clothes on. So I tried to dress him against his will, and I soon learned how strong he is.  His little muscles were so rigid, I had to use all my strength to pull his arms through his shirt. Meanwhile he was howling! I put him in our bed, and he was just thrashing around! I couldn't even hold him like I usually do, he was just going ballistic.  I've never seen him do that. It was really scary! The reality of his "special-needs" became so obvious at that moment, and I felt so helpless I just started crying.

During the day when he often seems like a very normal little 4-year-old, I feel like he will be okay, and he can have a wonderful future with not many problems from his "disorder" (I don't ever know what to call it). But at times such as last night when reality smacks me in the face, I want to crumble. And reality has never hit me quite so hard. I just cried, and whispered "Please help him Heavenly Father. Please comfort him." All of a sudden he calmed down and let me hold him. He became as sweet and gentle as can be. The instantaneous nature of the change made it obvious that God stepped in at that moment and comforted him.
Jett laid down and curled up against Pete and started petting his head like you would pet a cat. This is what Jett does when he's calm. He is the most loving little child you could ever know. He will sigh these little content sighs, close his eyes  halfway, and do a close-lipped smile. He will say the sweetest things in a gentle whisper.
So he petted Pete's head and said "Hi Daddy. {sigh} I love you Daddy {sigh}.  I'm so glad you're home. I just love to cuddle you Daddy".  I fell asleep feeling both grateful to God for taking care of Jett when I couldn't, and depressed and sick about the reality of Jett's condition.

*I should explain why Pete wasn't helping out during all of this. Pete tries to help.  He used to be the first one up when Jett woke up in the night, and he still tries to help most of the time. But we have learned that it's pretty useless for him to even get up.  Jett wants nothing to do with Pete when he's having one of these episodes, and Pete feels helpless. And when he feels helpless, he just gets angry and frustrated, and wants to demand that Jett calm down and go to bed. It does nothing but escalate the situation. Somehow God has blessed me with infinite patience for Jett. Pete has not been so blessed. He's a wonderful father and is always the first one trying to help when any of the kids need anything. But in the middle of the night, well... it's best that he just stay in bed. I know that he was scared last night just like I was. I know that he felt helpless and didn't know what to do. So I was glad that Jett snuggled Pete when he was feeling better. I think that was good for both of them.

This morning I spent quite a long time on my knees talking to God about all of this, and asking Him for help. One thing that I've gained through all of this is gratitude.  I am SO grateful for the Gospel of Jesus Christ in my life.  I've always loved the Gospel, but never actually appreciated it until now.  Every answer that we've gotten concerning how to help Jett has come from God.  He has granted us that inspiration that is promised to parents specific to the needs of their children. Every time we have had a breakthrough, it's been an answer to a specific prayer to Father in Heaven. The gospel has become a lifeline which we would be absolutely lost without.