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| Today's spelling sentence: Perhaps I will eat peanuts tomorrow." |
I feel like I need to really prepare myself for tomorrow but I'm not sure how. I blog out some of the anxieties so in real time and in real life I can look cool calm and collected for my Coby.
When it comes down to it, I am usually good at putting up a solid front and planting on that mask but my sub conscious is not having any part of it.
One can slap on that mask and fool the world, but fooling yourself is another story.
So when I lay in bed trying to sleep, my mind goes into hyper-drive. And so my insomnia decided to strike a couple of days early. I figured I wouldn't be able to sleep Thursday night after he eats peanut in fear of a delayed reaction. I
also expected that I probably wouldn't be able to sleep well tonight as I anticipate what will be tomorrow, but I didn't think I would have trouble sleeping already TWO days before the up-dose, but yep. Insomnia got a running start this week.
How is "peanut day" already here? Well 20 hours away.
And how are we going to actually do it?
I've seen videos of kids breaking down when it came to actual peanut day and have a real problem putting it in their mouth.
I've seen with my own eyes another child's 'peanut day' and both the mom and the kid completely broke down unsure they can actually do it.
I've seen what actual peanut did to my kid. An actual peanut tried to end my kid's life. And now I'm going to go ahead and let my kid eat that peanut? After all these years of being so careful and avoiding his poison, now what? I just give it to him?!!
WHAT THE BLEEP????
Coby though is soooo excited and THAT is what is most important.
Already yesterday morning he was saying, "I cannot believe I'm going to eat actual peanut!"
Later in the day he was playing agario and named his player INSPIRATION because he wants to inspire others. Well he sure inspires me, every single day. He has been a fighter since before he was born!
Last night when he was supposed to be sleeping, he was instead serenading himself. (His tightly closed eyes were not an attempt to try to make me believe he was singing in his sleep but rather his response to the light on the phone)
Tomorrow?! He is going to eat actual peanut tomorrow?!
But, but, how?
I know he has to.
I know that ironically it is only by eating his poison that he can be saved from his poison.
And I know it's the right thing to do.
But how?
Too many feelings...
We just have to.
Nearly every day I am reminded about why we are going through this scary journey. In the last 24 hours I was shown 3 reasons.
One was yet another crappy label. The outside of this granola bar box makes no mention of peanuts, but inside on the individual bars it says, 'may contain traces of....'. WTH????? So a mom buys the box of seemingly safe granola bars. Kid grabs a granola bar from their safe home and....
Second reason is because the world on a whole just doesn't care. I read another article about the cruelty of people in this world and what they say to and about the child who is living with this disability. Literally saying they don't care if he dies, if they want peanut butter- they will eat peanut butter.
And the most important reason: another reported death due to food allergy. 18 year old in London. Didn't have epi with him. Never before had a big reaction. Thought grilled chicken was safe. It was not. http://www.standard.co.uk/news/london/teenager-died-near-london-eye-from-allergic-reaction-to-street-food-chicken-a3524006.html
Everyone's worst fear. And so we really have to continue on this journey....
But it is so hard to wrap my mind around how can I SAVE him by POISONING him? That makes no sense on so many levels!
Tomorrow----- we enter the final stage of his treatment.
How?
This is making my head hurt and my heart pound.
This is unreal.
But we venture forward.
When Coby got home from school today we both were soooo excited to be dosing with our LAST capsule. I hate those things! Of course just to get me one last time, the damn capsule splintered and so I had to toss that splintered capsule and bowl of applesauce with peanut flour aside. So I opened another capsule and the flour was jam packed in there.
But we did it!!!!
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| Final capsule dosing! |
(I actually- stupidly, decided to taste the peanut flour myself. I figured hey, there's the unused peanut flour I have to toss aside because of the splintered capsule- let me see what my kid has been going through. So I tasted it. And it was NASTY!
Why was it stupid for me to taste it? Because I haven't had peanut in over six years either. When people avoid a food for so long they can develop an allergy. Coby's doctor assured me I should be fine, but my plan was to wait to taste peanut until we were at the doctor's, just in case. That slipped my mind and so I ate most of that flour dose. And I could have sworn that my tongue felt 'strange stingy' afterwards. So of course I worked myself up thinking I was having a reaction and my heart started to pound. I tried to talk myself down telling myself, 'this is just anxiety, not a reaction- there is a difference.' But when we went down to the den I brought Coby's epipens with me so they would be there right next to me in case I'd have to stab myself. I was so relieved when the first hour was up, but I think I will wait til the doctor's office before continuing my own 'dosing'.)
And Coby's two hours went without a hitch.
I heard him chanting from across the room, "No more capsules. dun dun dun dun dun. No more capsules dun dun dun dun dun...." Too cute. I only got a split second of video of that.
FINALLY!!!!
I am so done with this stage and am ready to move forward!!!!
I think...
But wait...
What are we doing?
Seriously?
We are going to feed him actual peanut?!
Like for reals?
Like crack open that shell and give it to him?
But last time he had actual peanut....
What the hell are we doing?
What if we're wrong?
Is the world really going to open up to him?
Will he really be airborne protected?
Touch protected?
Bite protected?
But-----
Really?
ARGH!
Is this really going to work?
And if it does, How will we go from our white knuckling through life to a live and let live? How do we desensitize ourselves from our own anxieties and the way we lived life for over six years? I cannot even imagine.
How can we change all the NOs and STOPs and DONTs to SUREs and GOs and DOs.
How is this happening?!
And will he be okay?!
Will he be okay tomorrow? Will he be okay for the rest of the process? Will he be okay in life? I mean, he can still have reactions despite all we are doing...
...but he will be so much safer.
People sometimes wonder why we are going through OIT when he will still be considered allergic and can still have reactions. The easiest answer is to keep him as safe as possible while allowing him to live life fully.
Pre-OIT he was at risk of having reactions while having life closed off to him. Playdates, camps, birthday parties, bar mitzvahs, girlfriends, colleges, vacations, travel....---- all that already closed off and STILL can have reactions despite all our precautions.
Post OIT his chance of reacting is lower than pre-OIT and life will no longer be closed off to him. He also will no longer be touch and airborne sensitive. And one wrong bite won't have the power to kill him anymore.
Should be a no- brainer....
but it's so complicated...
One of the pros puts it like this:
"If reactions can occur any time during OIT, why is OIT worth it?"
No guarantees. OIT is in NO WAY a "golden ticket" to an Epi-free life. For some that's a deal-breaker because they want MAGIC to happen. And that's OK, anyone can unsubscribe and go about their life and try to avoid. We don't want or need to "convince" anyone, we do offer our help to help others understand the JOY that is post-OIT life. When you are living in a food allergy war zone it's hard to imagine what life on the other side looks like.
Here's the key. You have to look at BOTH sides of the equation. And that's what a naysayer does--looks at ONE side and acts as though the "strict avoidance" side is EASY and EFFECTIVE. And strict avoidance, nationally is a dismal failure. You know that. High numbers of reactions and vigilance required.
No one can estimate a percentage of risk whether your child will have ANA with or without OIT. That's the calculation those of us who proceed did in our heads. For me, even if it was equal to avoidance--5% or 15% with or without OIT, who knows?--the scale tipped toward OIT because it allows us to live normally and participate fully in life. To get rid of the fear of food, the social exclusion, the emotional stress and worry. Constant conflict and questioning with every bite of food.
Risk remains on both sides. Your child is still allergic. But life, life is what happens when food just becomes food again.
Your life post-OIT is NORMAL. You will never look at a label again. You will not ask a waiter anything about the food except how it tastes. You send your child to school and go about your day. On your way home you can stop anywhere and eat or get take out. You hop on a plane and hope for a window. You visit friends and relatives and enjoy their company. You fully celebrate with food anyone's birthday, wedding, anniversary... when food shows up you can be excited! Your child goes places with their friends and their families without a care. It's real life. There is no stress related to food.
The Epi-pen becomes your Epi-friend and you know if, for some strange reason a reaction occurs it simply stops a reaction immediately and you text your doctor. It becomes the spare tire in your car, the fire extinguisher in the kitchen, the band aid in your purse. With it you are invincible and unafraid. Life is incredible when food is just food!
BUT....
TOMORROW?!
I cannot begin to wrap my mind around this.
G-d grant me the serenity to accept the things I cannot change---- and I had, for over six years....
The courage to change the things I can----- trying so hard to be brave as we attempt to change what we once thought impossible
And the wisdom to know the difference---- this remains to be seen
In the meantime....
TOMORROW.....
One more dawn
One more day
One day more........
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