Good evening. At least my perception is that it is evening since what I see when I look out my window is a shade of darkness forming over the land.
I wanted to take time to explain what this "Invisible" disease is. Mitochondrial.
Ever look at a car and think "man she looks sweet".... a car folks, not your wife, follow me here. Then you decide to drive the car and there are problems. Some much more major then others. For instance you have a engine with mounts that are loose. Or even spark plugs that are going out. Even a battery leaking. As I said some major, some not so much. But over time, if it goes untreated, the engine will eventually stop, at what point, you dont know, until it is too late.
Let me pose another question to you. Say a doctor came into the room on a routine check up and said, "I want to prepare you so I want you to go home and look this up, Mitochondrial."
He doesnt give a diagnosis, he just tells you to go look up a word. Doesnt say anything else about it on that visit. Here is what you find if you google it. http://www.medicinenet.com/mitochondrial_disease/article.htm
We went through the test and yes, the doctor was right but we knew what we were walking in to. We just didnt know the magnitude it would take on our lives.
Let me pose another thought. When you are diagnosed with something, you think the worst, and hopefully best case scenario. What if the BEST case was you would live to be 30 years old, if you beat everyone else before you that had the same thing. It is rare to find anyone who was diagnosed by age ten to live past age 30. Let that sink in. How old are you now? I assume since you are reading this you are probably over the age of 12, so half your life? Maybe even your life 2 times over?
How do you react to knowing your life is going to end? Do you worry? Do you just let your parents do the worrying? Would you want to know? I remember as a kid playing with my best friend Scott. We would always sneak out quija board but would NEVER ask how old we would live to be. What if someone you knew had the answer? Would you want it from them? Would you even notice that nothing is really wrong with you if your parents protected you from it?
Before you judge, think about it. Jacob has no idea what all this mean. He doesnt read this blog. Nor do we ever want him to. We have to protect him. His life is lived everyday to the fullest. He goes to baseball games, movies, swims.... he lives a normal life and does normal things. What he doesnt know is at some point, it is going to end. I dont say this to get pity from any of you. I dont want it. I dont need it. I am simply replaying information that most of you dont see, ask for, or are ignorant to. I guess blind would be a better word.
As I write this blog, this is all from my heart. If I offend you, dont take it personal. I am writing this in hopes that you all see Jacob as a fragile boy, who needs love. As parents we wont see him grow up, get a great job and work it for many years, able to retire and have grand kids. He will never see that. Will you? What if I took that from you? Would you want all of the sudden people to treat you differently? Because I promise at some point, someone will notice that you are not normal and will make fun of you, simply because "you have an issue".
I hear all the time two things that piss me off. And pardon my language but this is going to be raw and uncut. I am not going to go back and edit this.
1. Jacob acts fine. Lets address that. Do your kids freak out after running a little bit, EVERYTIME they run? Do your kids cry for literally no reason at all, EVERYDAY for hours at a time? Do your kids trip on air EVERYDAY? We spent the week up at a family members house this past week. Its amazing. But no one saw Jacob have a seizure first thing this morning, and then his attitude the rest of the day. It was bad. I mean yelling, for no reason. Biting, punching.... Yeah he did that. But lets get one thing straight. He isnt stupid, or handicapped in the way he does things. He has a normal IQ. He just has a few things that make him act out. Mitochondrial and autism are those things. And paired up they are a pain in my..... Dont tell me my kid acts fine. Watch him closely next time you are around him. He will complain at least 3 times, that his belly hurts, his legs hurt, his head hurts and his ears hurt. Pay attention. Prove me wrong, I am down for it.
2. Jacob looks fine. I think I addressed this very well at the beginning. But seriously, looks can be deceiving. His legs are going out. He cant stand for long periods of time, and he is full of crap. No seriously, he cant poop. Crappy eh?
You know, I have been thinking of writing for some time but in reality, as his father, I dont need to justify anything we do as parents for Jacob. He knows we have his back. I just wish everyone else did. Dont tell me "we have his back" yet you wont get to know him. You know how many sleep overs he has been invited to in his 10, almost 11 years on this earth? Zero. I know we can all count that high. Has anyone offered to watch him WITHOUT his brother? Naw. Why is that? He is normal right? Is it that you just dont like him? Well his brother gets a ton of praise. Anyone would watch him. But why not Jacob. Tell me why that is? I REALLY want to know. Maybe you need to think about that for a moment. I have time.......
Sorry this is kind of a moan post but I want people to accept Jacob. Love him, like we do. Dont EXCLUDE him from things anymore. If anything he should be invited before other kids, because his time is short. And yeah I do want you to feel bad for him. Why? Because we would feel bad for you if it was you or your kid.
Dont feel bad for me or Brit. We got this! But have the courtesy to feel bad for Jacob, because he doesnt have the time we do.
This is a blog about Jacob, who is 10, and his fight with Mitochondrial Disease (Kearns Sayre Syndrome) and Autism.
