This will be a contemplative, perhaps confusing, maybe venting, post.......so there's the disclaimer!
My mind is raging a battle ever waking second of every day I am with our son, Garrett. He is my heart. He is amazing. He is beautiful. He is not normal. When I am alone with him, he seems to be more settled and calm, but with the addition of any other input, it adds to his stress load. His school occupational therapist, who is rapidly becoming one of my favorites, put it very clearly to me in the IEP meeting last week. She said, "We all have to keep in mind that every bit of input coming into Garrett's brain enters as an emergency." Wow, did that help me understand better. But while my understanding deepened, it did not change the fact that this is all SO frustrating to try to parent.....and understand......and even love sometimes. This does NOT mean I don't love Garrett. It does, however, mean that I absolutely detest, loathe, hate and despise the war waged on my son's brain and in my own heart and mind.
Let me share some typical monologues I hear from Garrett over and over and over and over and over and over and over and over and over every day:
- Are you stupid? People are not stupid. You not stupid. Why we don't say stupid?
- POOP!!! I say POOP! We don't say poop? Babies say POOP?
- Mom, I like you. I don't like you. Whey we don't say like baby says I don't like you?
- I hate you!!! Why we don't say I hate you. Baby says that? Well I hate you.
- Do you have poop inside you? Do I have poop inside me? Why we have poop inside us? I have poop inside me? I wear diaper. Baby wears diaper. (and he walks up to strangers and asks this over and over)
- I gag myself. (then he puts his hand down his throat and gags himself.....going on two months now, many times each day) Why we don't gag myself? I gag myself. (then last night he ended up gagging himself while in his bed for the night until he threw up. His bed had a wet place on it and I asked what happened, and we had a "nowhere discussion" where nothing made sense and he looked at me like I was speaking another language. SOOOOO DEPRESSING!!! And the psychologist tells us to ignore the gagging. Well that was fine except that this gagging deal is now causing him to throw up, so we ignore it? Today I pinched him and fussed at him about it.....it didn't help. It's like if you correct him, he obsesses more and does the behavior more. SO F#%&ing INSANE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
- I hit myself. I not hit myself. I do. I hit myself?
- Mom, I don't like you.......... (honestly, as much as I know he is retarded in his brain and he truly does not WANT to be like this, this phrase over and over and over at least three times a day HURTS!!!!!!! It really, really hurts.)
These above little monologues are plenty, but add to this his outburst of loud noises, screaming, screaming and all in the car to hitting, pushing and kicking Addie and Ainslee without his being able to take our correction, and I end up a very frustrated, unwound, frazzled, defeated human. The day can be clicking past pretty well and I am thinking, "Wow, today has been a good day. Garrett has been pretty easy. The girls are doing so well with him and are sooooooo helpful, kind and loving, and I am actually getting some things done around the house and outside. But then BAM!!!!! I go to change another overflowing, huge, stinky diaper and here comes another crazy monologue:
- I touch my poop? I kick you? I touch poop!!!! (and tried to dig into his crack while poop is dripping off of his bottom as I am trying to change his diaper) You get mad I touch my poop. What you do I touch my poop? You sad. What you do to me? You pop me? MOOOOOOOOOMMMMMM, you listen to me! I touch my poop!! Why I not kick you. I hurt you? (and I have tried ignoring this talk, but when I do, he becomes more agitated and presses harder, wanting more and more attention.)
Over and over and over all day. And although this thought of separation has been evolving in my tiny free space in my mind, today it really became apparent. It is SO terribly frustrating on a daily basis to hear things over and over and over and not see it get better. It is literally insane, retarded, whatever you want to call it. I find myself getting so angry inside, so angry that it is overwhelming and scary.......and the most likely subject of my anger is Garrett. Then I realize I am feeling angry when the blood pressure rises and my emotions build. Next, I remember to remember that Garrett doesn't ever CHOOSE this path in his life. He doesn't TRY to be retarded or slow or irritating. So then my anger is basically discounted, completely negated because the normal course of directing anger towards the source of the irritation cannot work here, I fall. I fall completely flat on my face with my heart completely smashed beneath my heap of human inability and uselessness. It is then I hit the very bottom. Usually I am trying to buckle kicking Garrett into his seat as he hits me or I am bent over his very disgusting diaper elbow-deep in poop......and I just buckle to tears, trying my best not to let him see me get upset because that brings another whole monologue of insanity. "Mom, you not happy. Say cheese!! You happy now!!" Sh#%, were it only that f&%$ing simple, dude!!!!!!!!
Please pardon my French tonight. It's just me. I am real, this is raw truth, and it feels like it is endless. I honestly cannot see my son "snapping out, maturing past this or catching up," ever........ever. He is almost six. My almost 5 year old nephew can count to 120 or more. My son can sometimes count to ten and not usually do it using manipulatives. I am not comparing....just sharing the difference in benchmarks for my son's capabilities. My son is not toilet trained, although he is showing interest, I can tell you this will be at least a three year project with things like they are with him. He cannot help it. But gosh is this frustrating.
I have still had a good day today, really. I can have a great day but still sit here and share the insanity of the previous day. All in all, I know I am a better person, a more patient mom, and a much less selfish person. These are all good things. I am just having a hard time swallowing the long term manifestations of this disease and its impact on my child's brain. It's just hard. It's painful. It's our life. It seems to be this way indefinitely........I just hope I can go the distance. I have been running again about three days a week, and I think it is helping me to do that. But it's not like anything I do can help make things better with Garrett. I just go and go and push and wait and pray and research..........and start over again each day but have those crippling, crumpling human moments at least once to five times per day. I get right there to tears, then have to snap out of it. It's funny that in my past 36 years, I can say I have felt helpless, completely frustrated and somewhat hopeless about something maybe once per year, and it was always a sort term situation. But now it is usually multiple times each day. Dumbfounding. Perplexing, and I will wake up to it again tomorrow.
No, I do not want to lose my son to Mitochondrial Disease and the likely future that his health will decline well before the average person's. I want him to live, quirks, insanity and all. I just cannot promise I won't need my own drugs and straight jacket before it's all over!!!
There you are. My honesty. Your entertainment. Your kindness.......please, your prayers!!!