A Mo Update
Excuse me while I get pissed for a minute. This is all stream of consciousness stuff. Today Mo had his allergy testing. It was a big deal since he had a bad reaction to some testing very early in his life. Today he only tested positive on the Control.
Good news you think. Yes it is, but what it really means is that I/we/doctors still do not have a clue about his auto immune deficiency and that pisses me off. With every test there is the opportunity to define the reason why he is so sick. When a doctor tells my wife today that he is healthy as a horse, I want to scream at him, "Then why the hell do I pay $25,000 a year out of pocket in medical bills and he's been on antibiotics since last Hallow- Fricking- Ween?"
My mom and Mistress are for now at least a bit happy that he has no allergies and were back into auto-immune discussions. We can actually drop a drug. Goodie. Meanwhile instead of having the 'address' of his problem we are told he lives in a certain country. I know that doesn't make sense but I want a NAME. I want a face of evil. "Tell me which way to point my weapon sir and I will not fail you. "
Colitis.
Great we know that one but it doesn't explain why his immune system is constantly trying to destroy itself. It is not the source, it is the symptom. I know it. I know it. I know it.
I have to do this here because I have to be strong IRL. I have to go home and hold my son's hand while he cries on the toilet. Then when he is not looking check the bowl for the amount of blood in it. I have to give him cold wash clothes on his legs in the middle of the night when he wakes up crying because they hurt. I have to remember to not get angry when he refuses to take a nasty tasting medicine and remember to hide my tears when my son who will be four this month tells me HE's sorry he forgot to take his peanut butter medicine (its mixed in). Like it was his fault. Like he has a choice...
I have a lot to talk to God about on the ride home from work. He and I are going to have some robust dialog.
posted by Comm's @ 7:25 PM
15 comments
15 Comments:
Comm, I sure wish I could do something to help. You guys are so strong I don't know how you do it. I do hope you gave God hell on that ride. It's definetly okay to let him know you're pissed off.
I'm sorry Commodore.
Comm...I'm keeping you and yours in my thoughts. I had no idea Mo was so sick. I'd hug you if you weren't so far away. Let me know if there's anything I can do to help...I know its not much, but it's all I can offer. Thoughts, an offer of help, and good wishes...we're here for you, man.
This is a great place to vent. It's not fair that Mo has to go through all of this. I'm so sorry for him, for you and for Mistress. The bright side of this tough trial is that now you know one thing it is NOT.
A friend of mine recently had a really hard time. She lost the vision in her right eye. The Dr's told her they had to watch closely because 40% of the people who went through this also lost vision in their other eye. She was devastated. Terrified, she just KNEW she would be blind in a matter of days, weeks, months. She was telling this story to an aquaintance. The woman listening to the story couldn't understand my friends grief. She looked at my friend and said, "wow, that's great when you think about it. 60% never have any problem with their other eye." How true. It's dismal when we are in the middle of it. Heartbreaking when we consider the worst of the possibilities. But joyous when you look at the best of the possibilities. One of the best now, is MO has no allergies! That is a wonderful thing.
Stay grounded and remember Mo's great smile. That would get anyone through the day!
We're listening.
Best Easter wishes to you and yours.
I'm sorry Comm...god only gives us as much as we can handle..at least that's what I think most of the time. Keep praying for that little guy..like the rest of us..:-)
It isn't fair and I'm sorry. Mo will always remember your strength and love for him.
I am humbled by your support. Thank you.
we are all hear to listen, Way to stay strong brother. We love you and your family.
you're a strong man, Comm - I can only wish you and your family the best - know that I'm thinking of you.
Nothing feels as helpless as not being able to heal your own child. Let it out. Vent it. It sucks. Then remember why he is so strong...he's got terrific strength in his parents!
poor little guy. just doesn't seem fair.
i'm so sorry things are hard for you and mo and mistress. it certainly puts things in to perspective. i hope you and God figure somethings out. in the meantime, you'll be in our prayers.
(yes... we pray)
parenting is the hardest job. it's way harder than the silly triathlon stuff we like to do.
the tri training helps to kinda put it all in perspective, and it takes the edge off.
I can relate to your feelings of helplessness. There is nothing worse than not being able to help your own child.
good for you for finding a way to let it out. good for you for caring so deeply about your child.
I'll be thinking about you...
Comm - that must be so frustrating. I will pray for healing and strength and understanding for all of you. Some things we jsut don't understand. Hugs to the three of you.
Jenny
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