Monday, April 20, 2015
Sometimes I feel so broken. For Kreed. For what he goes through and faces. It's more than any one person should ever have to face. Living it every day with him, it's literally a fight for his life. His body is literally trying to kill him. Think about this: if we didn't intervene, he would fall unconscious, suffer a seizure and eventually his brain would shut down followed by his heart. We have found him semi conscious on a number of occasions when he's had a large drop and didn't know. We just had a feeling.
If we didn't feed him through the night or keep close eye on him during the day he is at high risk for coma. A normal waking blood sugar is between 80-110. Most people's bodies compensate and shut down for the night or the liver will convert and release the glucose necessary. Kreed's body does neither- insulin is continually released and his body cannot make more glucose. His body is literally killing him from the inside.
Before waking every hour at night, we found him with blood sugars from 18-22. On average he would wake in the 40's still considered severe hypoglycemia. When it hits the 20's he is at risk for coma and for sure seizures. We now keep an emergency glucagon shot to give him if we ever find him unconscious. While most people find rest at night, we fight for Kreed's life every single night.
As it is he was suffering from lows at night without us knowing and he had such severe rages he broke bones. Sometimes he begins to rage and we have no idea why- now we assume low blood sugar. But without sticking his finger every couple minutes we don't know! That's why the monitor is so important to us. Kreed is also going through puberty and is going through a surge of testosterone- this is also affecting his medical issues. All of this is happening inside his body and he doesn't have near enough communication to tell us. Except in behaviors. Rages. Yelling and screaming. All this for hours and hours in the day. And into the night.
We live our life for kreed- we don't take vacations, we don't even really ever go out- he is so medically and behaviorally complicated. A nurse could come for his medical but can't deal with his behaviors. A therapist can come for his behaviors but won't know his medical. It's so difficult. So we do the best we can. Some days we feel so broken and worn out. We just want to give Kreed the best possible life. The happiest life. So when he is so unhappy, I feel like we have done something so wrong and failed him. I always tell people I am not angry for this or our life and it's true- Kreed didn't ask for this life. He didn't do this on purpose. He is an innocent child who has been given a horrible hand in life and as his parents it's our responsibility to try and get him through it and to try and find his joy and happiness and find meaning in his own life. I am not angry for what we don't get to do- I'm angry at the life Kreed doesn't get to have but I know he wishes he could have.
But most of all I just see his health taking a nose dive and I hold my breath, wondering what might come next, what part of his body will fail next. I don't know how much more he can take. I can't imagine living in his body and feeling what he feels and having no way to talk about it. Or having scan after scan and doctor after doctor and no answers. Just more meds which he is often allergic too. I can't believe how much he goes through and yet he can still give me such amazing smiles. And still loves me even when I have to restrain him to protect him.
So right now we're exhausted and broken. But we don't show Kreed that. We try to remain strong. I feel horrible when I'm mad at Kreed or when he rages and lashes out at us and hurts us. Deep down inside I know he doesn't mean it. Most of the time I doubt he realizes it.
I do know one thing is for sure: we will not stop fighting for him ever. And when they ask how far love goes, when our job is done he will be the one who knows.