I want to go into detail about how the doctor said Jason was ready for discharge and I told her, "Sure let me get his coat and Metrocard." The statement dripping with more sarcasm than a soaking wet mop and she looked at me incredulously and said, "No, he would leave by transport."
I want to tell you that I am proud of myself because Jason coughed mucus through his tracheostomy and I moved the trach-collar and wiped it myself. I didn't cry. I didn't flinch. I am numb enough to just do it.
I can't go on Facebook anymore. I tried. I tried to keep up with my own page and post on my own but then the messages start and the questions and I feel like a little kid who wants to run away. Feeling obligated to answer and not having the ability to. The biggest thing is the holiday posts. The every day of all the people I know and like to catch up with celebrating. I am not envious. That isn't the emotion. It is more like shame. I am hurt and ashamed that I can't join in, contribute or say something that will not make my life seem so tragic right now. I don't want to steal anyone's joy or merit any more pity. But at the same time I am floored with the outreach for Jason and find myself crying over the overwhelming emotion so much love and attention causes me.
This year will be different by every stretch of the imagination. This year my favorite parts of the year were stolen by a faceless disease who came after my son and made me bend the knee. I have gone through some pretty insane moments. Some pretty "Only Irene" things that have happened this lifetime. But all have paled in comparison to watching my son fight this cowardly disease that insidiously started a civil war within himself. Jason has (1) - yes folks - (1) B cell. That means treatment did not work - and he needs another round.
Do you know how I wish I could slip my fingers into the concrete wall wrapping it around a piece of rebar and just pull an Incredible Hulk like shake of this entire building?!?!!? That's how angry I feel. I wish I could rumble the Earth and create an earthquake and that - THAT could actually help me alleviate part of the stress I feel. NOT ALL - PART!
You have absolutely NO CLUE how badly I want to scream at the top of my lungs until my bronchial tubes buckle under the pressure and I drop dead and this is over. He needs to be at ZERO and successful treatment is ZERO and he has (1) mean B cell that is wrecking havoc in his body. I could not help but ask the nurse practitioner if she was playing a practical joke on me, my exact words: "Are you fucking kidding me right now?!?"
Amongst all this I am applying to rehabs and figuring out what is best for him. Who the hell grades rehabs and by what measure? Last year this time I was talking college with this kid, and now I have to decide on a facility that can help him learn how to speak again. Is this real? Is this real life?
"He looks great today!" They all walk in and tell me. I look at him and look at them and I don't say a word. I thank God for every small favor but you cannot tell bold face lies. Jason walked in here texting on his cellphone and now he sits in a bed and twitches. From the night I thought he was going to die until now... YES! I will concede he is better. But the Jason I raised and the Jason I am currently left with are polar opposites.
I pray to God all day long. To the point that people think I have an imaginary friend. I pray for understanding, I pray for pain release. Most of all I pray for Jason. I pray that his complications subside and that there are no more. I pray that this disease realizes it will not win and it leaves his body and knows it is not welcome back. I pray for guidance to make the right decisions because to this day I am stumbling around in the dark.
A mom and her daughter who has NMDA visited me. They both broke into tears watching Jason's monitor. Two years ago and that pain is still fresh, the anxiety still able to bubble to the surface. This is the place between heaven and hell. The part where you have to be thankful for the very basics and cling to that because everything else makes you a greedy person and is too much to ask for.
I return to work tomorrow. There is fear and anxiety over it but this is one of those decisions I had a conversation with God over and all signs pointed to it being time. I have to have a lot of faith and patience - that is what everyone keeps telling me. I am trying.
I wish I had the right words to comfort you, I wish that there was a switch that you could switch on and the Jason, as we know him would be back, I wish that this invader had left Jason alone. Unfortunately, I don't have the right words, nor the switch, and this uninvited nightmare has shown its presence. I can only continue to pray for Jason, and for God to guide you.
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