Why is it that people think that they can take a two minute snippet of something and judge the whole of that something? For instance, take a little look at my son and say "He's not disabled, you are making it up" or take a little look at my life and say "You are a bad mom" or "You fit this formula" ? Or like in the blog of one Christ fearing STRONG mom of a very ill child that I read, a reader reads a few things and then says "You are making your son sick for attention." Yup, makes your heart sick with disgust doesn't it? It does mine too, especially since I have been there, and feel like I am there again! Why are people so mean and narrow minded? Why do people think it is ok at attack those who are already down and trying so hard in horrible situations? I don't understand what drives our society to be so horrible!
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Does it sound like I am on a rant? Well, I probably am going to be..... it's just been one of those weeks! So get ready for a little tiny look at my roller coaster!
Things have been really hard with Nathaniel the last few days.... actually I don't know how long it's been going on, I just know that it feels like an eternity! He usually has one or two good days followed by a few bad days then back to good again. But recently he has been having good moments, like an hour or so, followed by hard hours... then a few more good moments. It's exhausting riding this emotional roller coaster with him and not knowing what is causing it! I am drained half way into the day, but there is no time for naps, nor would he let me take one! I know that one of the things that is probably bothering him is that we are coming up on summer vacation. Nathaniel does not like chaos. He likes a very firm schedule with little to no wiggle room in it. For instance, something as simple as waling inside the store after he gets off of the bus but before he gets catheterized will throw him off on his behavior for at least two hours! You don't dare forget to take the bathroom keys with you, or need to finish with a customer when going to get him from the bus! It is really hard to give him that kind of consistency on a normal day but over summer time it's so much worse! Four kids to coordinate and entertain, a business to run and two jobs to hold down. Not really the same thing for him as going to school every day.
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Yesterday Nathaniel needed to come home from school early with me. A big kink in his schedule plan. He did ok in the beginning, but about an hour into it he started in with his sister... for no apparent reason. She is sitting on the couch minding her own business, and he walks up to her and hits her. She cries. Me: "Nathaniel, what was that for?" Nat:"Ump"..... Me in my mind "Oh shit" (yes, it is MY blog so I can say what is in MY mind! Don't like it? Don't read!)
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Do you know Nathaniel? Do you know his "Ump" mood? Let me tell you, it is NOT fun! It is one of the first signs that he is about to go into defiant mode, and non verbal mode. I applaud all those parents who deal with non verbal disabled children daily... it is so hard! It takes every ounce of my strength to get through it, and sometimes I go down in flames in frustration! So anyways, this somewhat little incident lead into a two hour defiant, physically aggressive mode. This means that Nat needs held, in an adults lap, with his arms held so he can't hit. It means we either count from 1 to 10 or sing "One Two Buckle a Shoe" over and over and over again. Quiet, calm voice repeating over and over again the same thing. Calm, even when there are ten million things that need done, like finishing a wedding party's dresses, helping customers, answering phone calls from annoying people or answering ten million texts from the husband who has decided that he will only speak through text messages. Then, with no indication of what's happening, my sweet little boy will look at me and say "I am fine Mommy, We are done." Sometimes I get that message after 10 minutes, sometimes it takes hours.... yesterday was an hours day, and we did it twice...
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Then there are the people who think that they can look at one or two 10 second clips of my life, reported through another's eyes and judge what I am doing with my children. I just want to throw my hands up in the air and shout "How can you be so stupid?" But that won't get me anywhere.... no one likes to be called stupid. I was blessed to deal with these type of people again all day yesterday. I makes me want to give up. Seriously. Give Up. But I know that is not what Christ would have me do. He never stopped in the middle of a teaching, looked around and said you are all too stupid to get this. So I can't do it either. Even if I think they are..... functioning at a lower capacity than myself (there is that better than "stupid?). I must dig in.I must stand firm in the knowledge that I am a GREAT mom, who works incredibly hard in the face of much adversity, to give my children the best life that I can. I must rely in the knowledge that my Lord has a plan, and though I can't see it, nor can I understand the current suffering, He knows best and I must trust Him! I must turn up the worship music REALLY LOUD and remind my heart and brain who I serve and why. I must endure, for the sake of my sanity and my children.
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Pray for me in this?
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And then there was the incident at the school about my son's cauterization. I am really picky about who dose this, and that I train them. Not the school nurse, who couldn't pick Nathaniel out of a group of 10 kids (nor probably 5 for that matter). Not any of the staff who has been doing it, yet NEVER spoken to his Dr. No, this is my son. This is a procedure that keeps him safe and healthy, and if done properly keeps him out from under the surgical knife for a bit longer (my prayer is that he can avoid surgery until he is old enough to make the choices that will effect him for the rest of his life, because they are not reversible). So I specifically requested to be present during ALL training of the new staff for next year. And I was told that was fine. We even have a time set up next week where we will be training one of the new staff members. So imagine my surprise when I wandered in to pick the kids up for an unrelated incident, and was told that Nathaniel was with the health care staff training the new person. Was I IRATE? HELL YES! I am still seething over it. So I am off in a few minutes to have a talk to the principal of the school. I hate that they are so inconsistent, and straight up lye to me. This is MY child and his HEALTH that they are messing with. This is so unacceptable to me! In so many ways I wish that I could home school him, but I know that I can't. I mentally and physically need those few hours. And I have to work sometime to pay the mortgage... no one will provided me with free housing! Here's another are that you can pray for me. Because if they can't promise me that no one other than the staff that I have personally trained, will be catheterizing Nathaniel he will be pulled back out of school today. I just can't mess with his health!
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To end on a high note..... because life isn't all bad..... it just feels that way sometimes! I got to do something special last night..... I got to go see my beautiful niece Josie perform with her school choir at the local performing arts center! She did a wonderful job, as did most of the other youth (I will have to post a rant about the boys and their attire latter, I am out of time!). It was an enjoyable evening of music. I videoed Josie's solo and will have to find time to upload it here for you soon!
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So today I am going to stay strong in Christ. I am going to bless a co worker. And I am going to walk the path provided for me by my Heavenly Father. I hope that you too will take the high road!
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Blessings!
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