Wednesday, June 29, 2011

On Clayton: Stream of Consciousness

Clayton is on his first trip to church camp this week.  What a milestone!  He took his Daddy with him (the reluctant camp counselor), but even with Daddy, this is such a big event for him to experience.  I am so excited he is getting to enjoy this rite of passage with the other kids!

Even though he is gone for a couple of days, he's always on my mind.  My life is totally planned around his schedule.  His feeding, his therapy, his meds.  My entire days are scheduled relative to his needs.  I've felt a bit lost to tell the truth, but it has given me time to sit and type out some other things that are on my mind concerning this precious child . . .

I wonder constantly about what's going on in that little head of his.  While I don't know the specifics, I do sense him struggling during this period of his life.  I don't know if it's the addition of Jackson into our family, his age, or a combination of both, but he is becoming more and more aware of himself and his limitations.  Oh, I think he has always been aware that he is "different," but before, the awareness didn't come with frustration.  He is frustrated so easily these days.

One of the main areas he is struggling with right now is mealtime.  Meals are supposed to be enjoyable, right?  Great time for the family to visit and discuss the day?  Clayton loves anything to do with food.  Food Network.  Top Chef.  Paula Deen.  Cooking with Daddy (and sometimes Momma!).  He has come so far in his feeding therapy. When he was a baby, food touching his lips made him gag.  He is at the point now where he licks all over salty snacks and other tasty foods.  He was doing this when Jackson was born.  Today, things in his mouth don't make him gag, but the problem is he won't chew and swallow.  If a bit of food does happen to get in his mouth, he just sits and begs someone to get it out of his mouth because he "can't like it."  The next step is for him to PUT SOMETHING IN HIS MOUTH, CHEW IT UP, AND SWALLOW IT. Sounds simple, but he has to take the step.  Meanwhile, Jackson is snacking on all kinds of tasty treats and gobbles down his supper as Clayton watches. This is where the disruption comes in.  If we all sit together to eat, nine times out of ten, it will end with Clayton throwing a massive fit about me eating, or Jackson eating.  It's usually directed at me:  "Momma, NO EAT!!"  And when I say fit, I mean fit!  Throwing forks, hitting himself, etc.  We've started punishing him by putting him in time out in his room, but it is so HARD to do!  Not because it's hard to punish him (he has consequences for other misbehavior), but because who can blame him for being upset?!  Here he is, forced to watch other people eat great smelling food, that when he licks it, tastes good, but he doesn't get the full enjoyment of the actual meal.  Can you imagine having to do that meal after meal?  Granted, his belly gets full via his feeding tube, but we all know that food is most enjoyed when it's actually tasted!

I don't know.  It's gotten to the point where I avoid eating with him and Jackson together if I can help it.  Which defeats the whole purpose of family mealtime.  And that's also hard to pull off since Clayton wants to be with me while I eat.  He'd just rather Jackson stay out of the picture.  Kind of hard to make that happen . . . There is no easy answer.  We just have to wait.  Things happen so slowly for Clayton, but they do happen!  I pray he takes a leap of faith someday soon and bites a bit of something good off to chew on and enjoy!

Other things flutter in and out of my mind concerning Clayton.  Satan gets a hold of my thought process so often and has me thinking that our time with Clayton will soon be over.  It's like when things have been good for a little bit I start to panic, knowing the next bad event is right around the corner.  Satan picks up on that tidbit and turns it into a full blown panic attack on some days.  And oh, the guilt!  The guilt I feel for enjoying Jackson's milestones!  It seems like I'm betraying Clayton in some odd way for relishing Jackson's abilities.  And in my warped, Satan-attacked spirit, I keep thinking Clayton is going to die because I celebrate Jackson in this way.  My brain knows that this is not how God operates, but my worry-infested mother's heart analyzes this situation to death!!!  Am I crazy?  Do other mothers go through this with typically developing siblings?  

So many changes as he grows and develops.  So many thoughts to wrestle with--both for Clayton and for Brian and me.  He's having to learn to live with disabilities and limits, and we're having to learn how to help him do that in the least restrictive way possible.  We are doing the best we can; however, the older he gets, there ARE boundaries.  We are becoming more and more aware of them as a family.  And more so than ever, we are counseling our own hearts on the ever changing barriers in Clayton's life.  We are completely committed to helping him cope with these changes, but it's going to take a lot of prayer and guidance from the Lord because some of these situations are really tough to handle!  Only the Lord can help us give the right words and the right comfort to Clayton when struggles come.  In the meantime, I pray for peace in Clayton's little heart. 


Suzette Ludwig said...

You guys are stronger than you think. I can't even imagine going thru the things you do with Clayton. God has given you a special gift and with that you should be proud. Proud you are. I hear it in things you say and pictures that you add. Satan does try and make you feel bad about things. You and Brian have overcame that so many times in the past and you will overcome this. God chose you and Brian to be a special little guys' parents. Gosh, how special you are. Love and kisses to and your sweet little family.

Cathy D. said...

All I can say is my prayers are with you, but please don't ever doubt any of your actions you and Brian are Clayton's Blessings from God. Please don't feel guilty about little Jackson, you are so good about giving your time to both and I know that is a chore. Iam so happy when you share with us because we can pray and send good thoughts. Love you and those beautiful boys.

Tracy said...

You are truly an inspiration to me. My son Jackson is 2 yrs old and has CP. I just had a daughter Sarah that is normal developing. I find that 10 days into her life that I am already having the same feelings that you have. Reading your words came as a comfort to me. That I'm not alone in feeling this way. Because I really felt that I was. Crying because I have to tube feed my son while my daughter is breastfeeding. And the fact that she will walk one day and that Jack probably never will. I just want to thank you for this post and your blog in general.
Prayers to you and Clayton,