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    Medical Cares Will Not Stop Us From Going Out in Public

    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.

    —-

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

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    Sympathy

    I hate when people try to do sympathy towards you. Such as when they say “you’ll get better!” Or “poor you”. I know my own body and disability issues. It’s permanent! No I won’t get better. Also when people ask “were you in a car accident” or “were you a smoker?” Just because I have a trach. Doesn’t automatically assume stuff. I was born with it due to health issues. I wasn’t supposed to be alive but here I am. Doctors kept saying I wouldn’t make it until 1,2,3,4,5,6,7,8,10 years of ages. I’m 24 now and I’m still here. So please next time you see me. Don’t say you’ll get better. Or poor you. You don’t know my story or struggles. I don’t want sympathy, I want to feel normal. But I can’t when you say things like this. There are right ways to approach me and there are wrong ways. Especially depending on if I’m having a good health day or a bad health day. #Sympathy #Disability #Trach

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