A WHOLE NEW WORLD

What can I say? It's been a whole new world for our Coby-bear! 

It's been over two months since Coby graduated and he is loving his new life!

What has he done in the last 2 months that he hasn't been able to do before?

1. He no longer has to wear his epibelt around his waist! Yes, he still needs to have his epi-pens with him just in case, but he doesn't need to be WEARING them. He is free to lean back, play sports and run around without having to hold that darn thing up and having to tighten it all the time!

button noting that there's an epipen inside his backpack pocket

2. We took him to CUPS frozen yogurt and gave him a sample cup and told him to go crazy sampling whichever flavor he'd like. And so he did. He ended up buying a brand new flavor too!

3. New foods: he tasted bamba for the first time! (HATED IT--- shocker, I know...) He got to eat yo-crunch and loved it! He got to eat Thomas' english muffins--- and 'eh/okay'ed it.

4. We are able to go out to whatever restaurant we'd like without having to call in advance or drill the kitchen staff about ingredients and allergies.

Rutgers Hillel cafe

5. He came home from his first day of school all excited about some experiment they did with gummy worms. "Mom, the teacher gave out all the extra gummy-worms for us to eat, and there wasn't a label. But I was able to eat it anyway because I finished OIT. And it was delicious! Last year I wouldn't have been able to eat it because there was no label." 

Yep, it's all about those small victories!

6. For the first time ever he's able to go to his cousin's engagement party! He hadn't been able to go to the past ones, but now.... it's a whole new world!

7. He was waiting to graduate to request a brand new kippah- of course he got one!

8. He is now able to TOUCH peanuts!!!! (though I did have him wash his hands afterwards because I am still nervous to have him possibly rub his eyes afterwards)

9. And last but not least--- Simchat Torah--- but I'll get to that in a minute.

First I want to admit that while OIT is amazing, I will not lie and  say maintenance life has been completely stress-free. There have been a few small bumps on the road like:

1. He still really does not like peanuts. Some days he cooperates with his dosing and some days he is really unhappy about it. He often complains about stomach aches and gets nervous before dosing and gets himself worked up. He doses anyway because he understands the greater good but it can be a bit trying at times.

2. He did so far have one minor reaction in maintenance. He complained of itchy lips and his mouth seemed to swell up a bit. Thankfully with drinking extra water and some time it resolved itself and no further treatment was necessary.

3. We still have to watch out for illness, his 2 hour rest period and environmental allergies--- any of those is enough to cause a big reaction while dosing. So we are still always watching waiting and hoping.

4. We almost have 'survivor's guilt'. Every single time I read about another food allergy death (and unfortunately I read about a whole bunch of them lately), it is heart-wrenching. I can't help but put myself in that family's shoes. I soooo wish that OIT was more wide-spread. Just last night I read about a 9 year old who took one bite of a supposedly 'dairy free' pancake her dad made, went into a coma and died. Can you even imagine? 9 years old just like Coby. One bite. They checked labels. It seemed safe. It wasn't. That poor dad. One bite. She's gone. It breaks my heart.

We actually half heartedly went to his allergy walk this year, almost as an after thought. We didn't raise money this year and we felt strange being there. FARE does not support OIT (some speculate it is because they want to line their own pockets with the cash) and seeing all those children with allergies, while Coby is now desensitized made me feel like a traitor even being there. I only took one single picture of Coby during the walk and we left and then bought him ice-cream from the ice-cream truck.

So while mostly we feel happy and excited and blessed and free... some guilt and fears still remain. I have a feeling they always will....

And now back to Simchat Torah---- the ultimate high that we were waiting for....

Simchat Torah had been for years  a complicated holiday for me. I mean it was fun of course and I absolutely loooooved seeing my Mikey and Josh under that big rainbow Tallit as we sang "Hamalach Hagoel" for the children. 

But 

For several years all I could focus on was that 'empty spot' under the tallit. I had been trying to have a baby for so many years and Simchat Torah always symbolized that emptiness to me. Not only did the holiday fall during Pregnancy loss awareness month; not only did it fall right after the anniversaries of two of my losses, but seeing that tallit which canopied all the children just made me long for my baby that I wasn't sure would ever come to be.

Thank G-d he did.

And for 2 years Simchat Torah was wonderful. Happiness, celebration and no more empty spot under that Tallit.

And then Coby had his big reaction. 

And Coby had touch reactions. 

And air-borne reactions. 

And Simchat Torah became all about the poisonous candy that was all over the shul. 

Butterfingers and snickers and take 5s and peanut m & ms.

Simchat Torah became a field of grenades waiting to detonate around my little boy.

But Coby wanted to dance with the torahs.

And Coby wanted to go under that tallit.

When he was younger we'd keep Coby on top of Yitz' shoulders with two lollipops in his fists.

That minimized the likelihood of him taking a poisonous candy.

That minimized the likelihood of him kissing a torah that was just kissed/and or touched by one of those dozens of fingers caked with his poison.

That minimized the likelihood of him dancing and holding the hands of those sticky little fingers that were waiting to detonate.

We also forced him to leave early.

As he got older he begged to stay for all 7 hakafot.

And so we let him.

The entire time I stood by the mechitzah with one eye glued to Coby and the other eye on the look out for all the poisonous candies.

Last year the shul asked people to be mindful of those with allergies when bringing candies into shul. BUT, while there were much less candies with actual peanuts (which was wonderful in minimizing the likelihood of a touch or airborne reaction), many of them still said 'may contain peanuts' so  they were still unsafe for Coby to eat.

AND

"that" story. That adult who took a few kids aside and told them if they are not happy with the candy stock that year, to blame Coby.

Our first experience of food allergy bullying.

Simchat Torah sucked.

And now Simchat Torah 2017.

WHAT A DIFFERENCE A YEAR MAKES!

COMPLETE AND TOTAL FREEDOM!!!!

Yes of course we had his epipens with him.

But we didn't force him to remain up on someone's shoulders the entire time (though of course he asked to be on shoulders for a bit of it because it's fun). We just set him free.

It really felt like we removed the leash that had been bound to Coby for all these years and let him loose.

He was collecting and accepting candy with everybody else. (Actually to be honest, he was a bit confused--- I saw most kids with HUGE bags of candy... Coby didn't really 'get' it--- he collected some candy, but nowhere to the extent that the other kids did.)

But

despite once again the shul saying to be mindful of allergies.... I saw it

(insert evil music here)

Reese's peanut butter cups

Snickers

Peanut M&Ms

Take 5s

And to tell you the truth despite me KNOWING Coby was fine, he was safe---- I was right back where I was for all those years.

My heart started going a million miles a minute.

My stomach hurt.

My hands got clammy.

And I just wanted to run over, grab Coby and take him home. And keep him safe.

It was the first time I REALLY understood what everyone meant when they told me that after Coby goes through the physical desensitization, we will have to go through that emotional desensitization.

I had to talk myself down.

He's safe.

He will not have a touch reaction.

He will not have an airborne reaction.

Even if he eats those things (which I knew he probably wouldn't since he hates peanuts), he won't have a reaction either (though if he eats the equivalent of 6 peanuts, he'd need to do his 2 hour rest period again.)

He is safe.

And he was.

And it was simply amazing to witness.

He collected his candy.

He ran around the shul.

He kissed the torahs.

He danced and danced and danced.

And he was beaming the entire time.

We had more than one person come up to us to tell us how wonderful it was to see Coby being so free.

The following morning he did it all again

AND

that was followed by the biggest kiddush of the year.

Last year we had to scrutinize the kiddush, find out where each item came from. Was any of it safe for Coby to eat?

Last year he ate hot dogs.

This year he was free to eat ANYTHING he wanted. Salads and cookies and cakes and chulent and kugel. He asked to eat the hot-dogs. And chicken. And meatballs. And fruit.

He wasn't sitting in a corner away from everybody else as he had to in the past. He was sitting with his friends and he was able to get up and go to the tables and fill up his plate with whatever it was he wanted.

No more isolation.

No more ostracization.

No more grenades.

Inclusion.

Safety.

Happiness.

Freedom.

It was just amazing being able to witness all at once what OIT has brought to my Coby. 

Sure there are still lots of feels throughout this process and it is a life time commitment.

BUT BEST SIMCHAT TORAH EVER!!!!!

AND HE ABSOLUTELY CANNOT WAIT UNTIL PURIM!!!

It really is a whole new world for Coby.  

A whole new world
A new fantastic point of view
No one to tell him no
Or where to go
Or say he's only dreaming

A whole new world
A dazzling place he never knew
But when he's way up here
It's crystal clear
That now he's in a whole new world with you

Unbelievable sights

Indescribable feeling

Soaring, tumbling, freewheeling
Through an endless diamond sky
A whole new world
A hundred thousand things to see
(Hold your breath it gets better)
He's like a shooting star
he's come so far
He can't go back to where he used to be....

So bring on that next bag of peanuts! It is time for Coby to soar!