tracheostomy

Insights from a chat with another medical mama tonight:

👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
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Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

More on our site at www.aaronandambersfamily.com

#DownSyndrome #TheLuckyFew #HLHS #HypoplasticLeftHeartSyndrome #CongenitalHeartDefectDisease #CongenitalHeartDefectDisease #PediatricStroke #Stroke #Tracheostomy #subglotticstenosis

When we first came home with AJ, I was really self conscious about doing his medical cares in public.

I would take his stroller outside of the restaurant to suction him. I would schedule our trips into town and stores to be in between his meals and meds so that I wouldn’t have to do them in public.

It wasn’t because I didn’t know what I was doing, it was because I was afraid of offending someone else. It was because I had read stories from other parents who had been confronted by strangers, or were even asked to leave a restaurant because caring for their kid was “gross”.

I really wish I could go back to the me who thought that way and shake some sense into her.

First - I was setting a ridiculous example for AJ, showing him that he should essentially be embarrassed by his medical cares. I don’t want AJ to grow up thinking that he should try to hide himself from the rest of the world for any reason - medical or not.

AJ has just as much right to experience the world as anyone else. I would actually argue that he has fought so hard for his life that he deserves those experiences more than most. His medical needs should not hinder him from getting the most out of his life - even if that is just a trip to Target for groceries. (Well, except during cold/flu/rsv season when we go into lockdown, but that’s a whole different story!)

Second - If AJ needs to be suctioned, then he needs to be suctioned. If it bothers someone at a table in a restaurant, or in the waiting area at sports clips, then oh well. And the same can be said of him getting his meds and food.

Maybe it sounds harsh, but those meds and cares are what keep him alive. If it ruins someone else’s meal to hear a suction machine then oh well. That person will live just fine without finishing their loaded mashed potatoes. AJ, on the other hand, might not live without his cares.

Third - People in general really aren’t mean. They may look quizzically at you, or do a double take. They may turn around to see what the noise is. They may even ask a question or two. But we haven’t had one person say anything negative to us at all while we have been out and about.

In fact, we’ve had more of the opposite. People will tell us they think it’s amazing that we are able to get out and see the world with AJ. Or they will tell us how cute or sweet he is. We’ve even had strangers anonymously pay our bill at restaurants.

Ultimately, if someone has something negative to say or are offended by the medical cares he needs to have done while we are out and about, the real problem is that they’re missing out on seeing the truly amazing kid that’s right there in front of them.

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#DownSyndrome #trisomy21 #t21fam #TheLuckyFew #TrachMom #Trach #Tracheostomy #Gtube #blendeddiet #blenderizeddiet #medicalmama #SpecialNeedsParent #Awareness #Acceptance #targetrun

AJ has oral aversion. He is physically capable of eating things by mouth, but he gags when he tries, which is why he is still considered gtube dependent. We came up with the idea of reverse trick or treating just for him.

We could have simply taken him out trick or treating and pocketed the candy ourselves, but last year I was participating in #last90days and I had decided to give up sweets. Having a pile of candy in the house wouldn’t have been a wise idea.

We decided that AJ would still get the fun of going door to door, but instead of getting treats, he would be giving them out.

We created some printable cards that had a cute poem about the idea of reverse trick or treating on the front. On the back we included another poem and an image that showed how to sign “Thank You”

People were initially a little confused, but it went over really well. It was really amazing to see AJ getting to interact with others in the community and even giving them the ability to sign back to him.

This year we plan to do it again, but after being asked by so many people last year, we also wanted to share a copy of the printable file with others who may be able to use them.

We reached out to Brad at 35 Corks Art Studio who makes the most AMAZING clip art for ASL signs. Not only did he give the green light to share, but he updated the image to incorporate AJ’s costume this year. Also, credit needs to be given to Melissa at Dorky Doodles who made the festive banners.

(Spoiler Alert: he and Averie are going as Addams family characters)

Inside of the file there are three different options for the front card, also per request from some of our friends.

1) I can’t speak to tell you that I’m not able to eat, but I sure do love to reverse trick or treat!

2) I can’t speak to tell you that I don’t like to eat, but I sure do love to reverse trick or treat!

3) We enjoy dressing up and wanted to do something neat, so we are here to reverse trick or treat!

The cards are sized and spaced so they can be printed on the front/back if desired.

To download a printable copy - see the link to the post on our website here: www.aaronandambersfamily.com/2019/10/21/reverse-trick-or-tre...

#Trickortreat #Nonverbal #nonoral #Gtube #oralaversion #adaptiveholiday #Inclusion #freecontent #SpecialNeedsParenting #Autism #Allergies #nocandy #Halloween