Thursday, February 4, 2010

somedays Spina Bifida SUCKS!!!

You know, I am usually good with my lot in life. I am good on the path that God gave me to walk. But then there are some days when I just want to stand up and SCREAM "Spina Bifida SUCKS!!!" "Pornography SUCKS!!!" "The abuse dished out in this world can SUCK!!!" There are days that I want to DEMAND to know WHY things are so hard.... And then I get over myself, I get back on God's path and I put a song back in my heart.

This past week or so has been my funk time. Like MAJOR funk time. I am so tired of talking to people who just don't GET my son. People who insist in standing in judgement, but are absolutely clueless. I am tired of the attacks that I feel like are coming from every side. (I know it is the enemy trying to beat me down, but it is still EXHAUSTING!) I am tired of being so tired that I get frustrated with those close to me that I love and I know are just there trying to help. And man alive am I TIRED of being so insecure! So, yea, I have been in a MAJOR FUNK. God bless those near and dear that have had to put up with me! (But thank God for them too... without J & D I would be so lost right now!)

So this morning was a Nathaniel funk morning. A funk that certain people are saying is MY FAULT, and I should not encourage. I simply wanted to sit right down and weep. But I didn't. Or at least not until he was dealt with and I was alone! I just need to unload, and see if ANYONE gets it... anyone at all?

One of Nathaniel's deals in major defiance. He doesn't want to do something he just closes down shop. Sit. Sulk. Pout. Not a word. Silent treatment. Then yell. Kick. Hit. Defy. And it jumps back and forth. Really hard to keep up with.

So this morning Nathaniel did not want to get dressed and ready for school. Pretty normal in our house. In the past I have just dressed him in a no nonsense matter, but it has been decided that I am no longer to dress him, that he is old enough to do it himself. So we sit there.

"Nathaniel, it's time for school. Time to get dressed now."

Sit. Pout. Sulk. Refuse.

"Nathaniel. It's time now, let's get dressed."

"NO! You are WRONG! I am NOT going to school. Done!" All the while shacking his fist, hitting, kicking and yelling.

Back and forth. On and on. All the while I am trying to stay calm, cool and collected. Get his sister ready for school and not cry.

Last week this was going on, so I took his sister to school and talked to the principal. I LOVE our principal! He said bring him here in what he is in, I will help deal with it. So this morning I put Nathaniel's brace and shoes on (it's a safety thing, he has to have them on to walk) and took him to school. In his diaper and nightshirt. He sat in the car while I took sister in with his clothes on his lap. Just sitting there. Mr J is amazing. He came out talked to Nathaniel and told him you either get dressed NOW, by yourself, or we walk across the parking lot to the nurses office where you can get dressed, but remember your friends are watching. 15 minutes latter, a few shouts and curses and lots of glaring at me from Nathaniel and Nathaniel got out of the car fully dressed.

Good grief. Does it REALLY have to be this hard? I mean come on. But I kept my cool. I didn't raise my voice AT ALL. AND I got my way. I showed Nathaniel that mommy is JUST as strong willed as he is! But here's the thing, I was SO TIRED from just getting him to school that when it was all done I sat down in the car and wept. Just wept my eyes out that it is so hard to just get him to school dressed! Just wept that somehow he thinks it's ok to treat people like that. Just wept at the uphill battle I have in teaching him how to behave in society. I hope he will remember this morning for the next few and it goes better. I don't want to be known as the mom who sits in front of the school and cries every morning!

And here is the thing... these are just two tiny examples. This is my life EVERY MINUTE. Over and over again. Defiance after defiance. Just take this morning and multiply it times at least 30 times per day!

On the up side, we have been having a HARD time with homework. This new respite schedule is NOT working out. The providers are NOT getting homework done when he is fresh and more able to do it so we have been having to do homework latter when he is more tired. And this is supposed to help me out HOW? So today I told him that if he got his homework done in the 30 minutes between bus and respite that he could have a treat. He TOTALLY powered it out! He did it all AND cathed himself in less than a half an hour!! Praise the Lord for bribery!! But seriously, I am so looking forward to going home and NOT having to do homework with him tonight!!


{april kennedy} said...

Oh you know I SO hear you! Tell Nathaniel that Blake's goal over Christmas break was to completely dress himself when school went back in session. So far I have only had to help once from a melt down. {I know we don't have as many of those as you do...bless your heart, but I have balled by eyes out leaving the school on several occasions.} So every night we pick out his clothes and lay them at the end of his bed and then in the morning after I help him get his diaper on after his bath/shower he goes in and gets dressed (and he needs to hurry or he starts itching really bad...he really needs lotion, but I can't add one more thing to his routine...seriously!) If he is dressed and ready early he gets a few minutes of TV time while eating breakfast {bribery totally works}! Maybe telling Nathaniel that Blake is doing it, it will help him want to try harder. I admit I baby him more than I should and it wasn't doing him any favors. We need to remember that while outsiders don't know exactly what is going on with EVERYTHING, they can let us know to back off a little and let them figure it out. It hurt when I was told that by my neighbor, but you know what....she was right and it has made all the difference in the world. Hang in there.