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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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    Anxiety/Stress Relief through Coloring/Music

    This is my first post so please forgive me if I am not doing this right or not explaining as concise as I should. I’ve struggled with panic attacks and overwhelming stress from the moment my daughter was born and immediately trached, to 9 days old and got a feeding tube in her belly, and all the many other surgeries she has gone through in her 4.5yrs of life. She isn’t done and most of the surgeries are out of state because she is a rare case.
    My sister did a simple thing, she sent me a stress relieving coloring book and some pencils. It was a simple task but it made a big difference. Being alone with my baby girl for 4 months (she was 12mo at the time) would have been harder for me to handle if I didn’t have a way to take my mind off of the stress. Listening to music and coloring works much better for me than tv and movies plus I didn’t have my hands free to munch so I didn’t stress eat while I colored. I have been on several long trips like the first one and I bring my coloring book with me. It doesn’t help as much for me when I am home with my husband and two kids but during the months away with my daughter, it has made a huge difference. I like fine tip markers better than pencils but that’s just me. I am sure this won’t help everyone but I hope it helps someone. #AdultColoringBooks #stressrelief #ParentsOfChildrenWithSpecialNeeds #ArtTherapy #specialneedsmom #TrachMom #tubiemom #ChildrensCraniofacialAssociation #CraniofacialDifferences

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