Yet this morning when I woke up and logged onto that group there was a new post: "Come on graduates- we know that people tend to post only when there are problems or they leave the board completely. For those of us that are still in this group let's help those still on the journey and post here if OIT has been boring with no incidents/reactions for your child."
And one after the other they came out of the woodwork. Weeks after graduation. Months after graduation. Years after graduation. Zero issues. Life changing. Normalcy. Happiness.
I soooo needed to see that when I did and I feel a bit lighter about it today. I still have a bunch of concerns and questions as we get closer to maintenance (which is still forever away anyway), but I need to remind myself to focus on the here and now; on the one step at a time- because all worthwhile journeys can seem too long or too hard or too big a chasm to cross, but when you do it one step at a time, it is very manageable. You need to block out all the what ifs and all that still needs to be done and just focus on the here and now, or maybe ahead just one next step.
A perfect example of this is my journey to Coby. I NEVER IN A MILLION YEARS thought I'd be able to do invitro and go through all those fertility treatments. It seemed impossible. No way in hell. A mountain way too high to climb. The almost daily 6:30AM appointments and blood tests and sonograms. The twice daily shots at home (some for several months), the horrible side effects, the ups and the downs, the procedures. The losses. The roller-coaster.... BUT when we focused on the 'one step at a time'- instead of all that was yet to come, maybe just maybe...'
- let's just go for that first consult- that is manageable.
-let's just go to the shots class- that's manageable.
-let's just get all the necessary tests done quickly- I got this. (and I had them all done within 10 days despite the doctor telling me that some people take months to get it all done.)
-let's just make that phone call and order the meds
-just tonight- just give me the shot tonight- the first is the hardest- let's see if you can do it without passing out.
-Just today. just one day I have to wake up before dawn for just one sonogram. Just one blood test. I'll be home before Josh & Mikey even leave to school and the rest of the day will be normal again.
-Just one more shot tonight.
-Just one more appointment.
Etc etc etc
And before we knew it it was over. By doing one day, one step at a time- it really wasn't so bad. When broken up into days, into hours and sometimes into minutes it was manageable.
And look what I got out of it.
Because by doing it one step at a time chasms can be crossed. The most worthwhile things in life are the ones that are hardest to come by.
We may be on a tough journey that seems endless and scary but this can literally save his life. It will change his life in more ways we probably can even imagine right now. Hopefully all will be okay like for the thousands it has been so far. And for all those lingering questions--- they can be answered as we get closer to that point.
Until (please G-d) Coby is protected enough it is only education that saves lives. Unfortunately though, even despite training people, accidents can and still happen.... but my Coby-bear managed to use his own education about his allergy to stop just before eating, read and perhaps saved himself what could have been a bad reaction. And I am beyond proud of him!
So what happened today?
His class was having a siyum with kids bringing in treats for the party. In the past, everything from huge bags of nosh was just dumped into a big ziploc for the kids to eat in school. Random pieces of chips, popcorns and cheese puffs obviously had no label once in that bag so Coby would bring it all home and we would take note of what was in there and buy him similar things in which we can find a safe label.
Today Coby wanted to eat in class just like each of his friends. For all the big bags of things (mentioned above) Coby asked his teacher, 'can you please check the ingredients so I know if it's safe for me.' He told me she only checked what he asked her to and the things he didn't want to eat he didn't see her checking. (WHY IS A TRAINED TEACHER NOT AUTOMATICALLY CHECKING ALL LABELS LIKE SUPPOSED TO- I HAVE NO IDEA...)
Also given out to the kids were individual packs of things. Coby was given a miniature pack of pretzels with no ingredients listed on it. A girl told him, "I think they are safe though." My smart Coby knows 'no label no eat' (we've seen pretzels that may contain peanut butter before & there's no such thing as 'i think it's safe' so we don't take the chance).
He was also given an adorable pack of emoji cookies. His friends were eating them and he was so excited to have his too. He told me, "they looked soooo delicious!" But just before he was going to open his bag something stopped him and he decided to read the ingredients himself.
 |
| "Made on equipment shared with peanuts...." |
The school's policy is that the kids can't even bring food in if it's made in the same FACILITY as peanuts or tree-nuts, let alone the same equipment. AND at least with a facility it can be in a totally separate section of the warehouse- and not even that is allowed.... but EQUIPMENT?! These cookies were actually made on the very same belt that holds peanuts? And it was given out to all 21 children without anyone checking the label.... until some inner voice told Coby he should check it. Thank G-d! I am so proud of him for stopping, for checking, for not giving into temptation and for putting the whole thing away. He then proceeded to watch the other children around him eat that which is dangerous for him. "But mommy it looked so good!" (I promised to buy Coby an entire box of rainbow cake which is his favorite--- all for him!!!)
I mean, I know an adult should be expected to take care of themselves that way (but even they would need help at times)- but an 8 year old? It's too much pressure on his shoulders! (Yes an e mail was sent to the school)
Reality is people will screw up: both well meaning people and people who don't give a damn. And it won't always end well. BUT.... if this type of thing were to happen once he finishes OIT, IT WOULDN'T EVEN MATTER!!! Shared facility, shared equipment, 'may contains'- that would all be FINE!!!! He would be safe. We can't count on anyone to keep him safe. And as smart and as vigilant as Coby is, he won't be able to keep himself safe at all times either. He can't control the particles in the air or the door knob that is touched. I am sooooo proud of my boy.... but what does this teach him? That those who are supposed to help keep him safe don't?! It is always nerve-wracking to send him to school or anywhere for that matter just in case... But for school though my biggest concerns would be 'what if there's a sub who doesn't know?'... But this wasn't a sub!!!! They KNOW his story and were TRAINED and STILL this happens?
Last night I went to bed so scared but today was eye opening with those out of the blue the postings specifically about all the "boring journeys" with no incidents, followed by my false sense of safety for Coby smacking me in the face today.
I am soooo proud of my boy. (I cannot say that enough!!!) And as scared as I am about OIT--- I look forward to every single updose because every fraction of a fraction his little body can learn to tolerate makes this world that much safer for him to live in.
One step at a time...
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