I've been asked several times how I got into writing. I never thought I would enjoy writing so much as I do now. Honestly, I got involved in writing and sharing my experience and thoughts for several reasons. The first reason was to express myself. It is not easy dealing with your first born child having a severe disability. I needed to talk about it and my ex-husband was the opposite. He did not want to talk about it. I had no one to talk about it with that was living the daily experience under the same roof. Therefore, I turned to writing. With that said, I guess you can say it turned out to be a blessing every time my ex-husband turned me away because he didn't want to talk about "our" life because writing has opened up many doors for me. Before I knew it, I was getting swamped with people thanking me because they read my blog and they were appreciative of how I was educating them on my boys' hidden disability. With that said, I am going to "talk" on here tonight and it may not be the prettiest post I have ever posted because I need to talk!
My heart has been shattered into a million pieces over the course of the last few years. Nonetheless, what I have witnessed and lived through the past 48 hours, it has shattered my heart even more. My Mommy heart has cried and bled for Trenton. He has had some major issues the last few days.
It all started with a rough night of sleep on Sunday night. However, even though we ran late, we arrived at our destinations and the boys had a good day at Harsha. However, when I picked the boys up Monday afternoon, his coaches told me that he had been crying for the past 15 minutes straight. He was crying saying, "Mommy." ,"Please. Mommy."
I thought Trenton would quit crying but he didn't. He cried all the way till he cried himself to sleep at 8:00ish that night. I had never seen his eyes so swollen before from crying. I can't even begin to explain what it is like to watch your 5 1/2 year old cry for 4 hours straight!!!! It was beyond nerve-wrecking. I can't imagine what it is like for Trenton. He can't express to me why he was crying. All he can do is cry. CAN YOU IMAGINE????? Seriously, can you imagine? I can't even begin to fathom what it would be like to not being able to express what was going on
He was up by 11:30 that night and cried off and on for the rest of the night. He was crying saying, "Mommy." He would hit himself in the head, hit his legs, shake his legs non-stop and hit his legs again. He did this repeatedly the entire night. I have no doubt that Trenton had some HUGE sensory problems with his body. I think he had the "ant & fire feeling" that was explained by one girl with severe autism. Other kids with severe autism have said that sometimes their bodies feel like knives are stabbing them constantly. Individuals with autism are wired differently than we are. Their brain connections with their bodies are not like a neurotypical person. Their bodies don't feel like ours feel. It comes and goes with Trenton like many kids with severe autism.
Last night was a repeat of Monday night. The only other thing he did Tuesday night that he didn't do Monday night was running into the walls in his room. In the past 48, I can count my sleep on one hand. I can not count how times I have cried on one hand. I can not count how many times my heart has bled and cried on one hand....It has been rough....it has been painful.....it has been excruciating to watch and witness and it is my child!
So, can you see how I don't have any tolerance for people who complain about the simplest things in life?! When I have the slightest bit of self-pity that wants to take over, I don't allow it to. All I have to do is to think about Trenton and how he has to spend every day of his life and I am instantly fine! Trenton and Andrew are truly my motivators in life. It is very hard to raise two boys with autism, one being severe, as a single mom. However, what I go through is very hard but not as hard as it is for them, especially Trenton.
I would do anything to take away Trenton's trials in life. I wish I could switch bodies with him. Sadly, life isn't that way. It is a hard life. It is a painful life...heartbreaking life....sleep deprived life...a life that is full of endless battles and challenges. Nonetheless, I will continue to stand by my boys and fight for them daily. I am their voice. I am their parent. I am their advocate. I am everything to them and they are everything to me.
Trenton- Hang in there Bubba!! I love you more than words can express. We will get through this and we will be rewarded in the end. Mommy understands you more than anyone and I am here for you always and forever:)