If there’s one thing really cool about being a part of the medically fragile children’s community… it’s US.
One thing I’m pretty sure about, is that the vast majority of us didn’t sign up for this gig. I mean… who WOULD?
Gone are the dreams of an idyllic childhood, carefree family vacations, the white picket fence, typical childhood milestones and rites of passage.
We have shattered dreams. And isolation. And doctors. And hospitals. And lab tests. And insurance companies. And MediCaid. And therapies. And surgeries. And home-based ICUs. And nurses. And DMEs. And equipment. And supplies. And IEPs. And PTSD.
Many of us also have broken families. Derailed careers. Wrecked finances. Broken hearts.
This life is NOT easy.
But we have our kids. And we have each other.
When things get tough, there are no stronger supporters than people who are in the trenches with you. We have family, and friends … and don’t get me wrong, they are well meaning. But that kind of support can be short-lived. When crisis hits, they are there and offer to help, but as the severity recedes, that support tends to fade. You see, the thing is, that with us, is it’s NEVER over. We do this 24/7. And no one really gets this but us. Our extended families and friends only get an occasional glimpse of what we are dealing with all day long, every single day.
Nowhere else, have I EVER witnessed the kind of support that our community gives EACH OTHER. If there is a community that knows how to pull together, and get shit done, it’s US. And the funny thing is, WE are the ones with the least time and energy to do that. But we all know how hard this life is, and when someone needs a hand, we jump in and help. Because we’ve ALL been there. We know the fear of a new diagnosis. We know the uncertainty of medical emergencies. We know you’ve had no sleep. We know you don’t know how you’re going to get through today, much less this week.
We don’t hesitate. When families new to the journey seek guidance, seasoned veterans become shaman to the newly initiated. When a parent seeks advice on an unfamiliar diagnosis, fellow families chime in. When a child is in critical condition, fellow parents lend support with visits, gift cards for food, prayers and anything else they can provide. When a child is desperate for certain medical items, we all take inventory and send them our spares. When disaster strikes a region, we rally, organize, pack up our extra supplies and get them to families in need. When one of our kids earns their wings, we all cry in unison.
II would never wish this life on anyone. But what I DO wish, is that people in general, could learn from us. Our circumstances have completely stripped us down to what’s real, and what’s necessary to survive. We are in it for love. And for each other. We are past the petty. We are past the bullshit. And we have embraced the “We’re all in this together” mantra. How can we take our collective experience make a difference in the greater good for everyone? Because it would be really cool, if everyone knew how cool it was, to be us.
~ Debra C.
Trach Mom
One thing I’m pretty sure about, is that the vast majority of us didn’t sign up for this gig. I mean… who WOULD?
Gone are the dreams of an idyllic childhood, carefree family vacations, the white picket fence, typical childhood milestones and rites of passage.
We have shattered dreams. And isolation. And doctors. And hospitals. And lab tests. And insurance companies. And MediCaid. And therapies. And surgeries. And home-based ICUs. And nurses. And DMEs. And equipment. And supplies. And IEPs. And PTSD.
Many of us also have broken families. Derailed careers. Wrecked finances. Broken hearts.
This life is NOT easy.
But we have our kids. And we have each other.
When things get tough, there are no stronger supporters than people who are in the trenches with you. We have family, and friends … and don’t get me wrong, they are well meaning. But that kind of support can be short-lived. When crisis hits, they are there and offer to help, but as the severity recedes, that support tends to fade. You see, the thing is, that with us, is it’s NEVER over. We do this 24/7. And no one really gets this but us. Our extended families and friends only get an occasional glimpse of what we are dealing with all day long, every single day.
Nowhere else, have I EVER witnessed the kind of support that our community gives EACH OTHER. If there is a community that knows how to pull together, and get shit done, it’s US. And the funny thing is, WE are the ones with the least time and energy to do that. But we all know how hard this life is, and when someone needs a hand, we jump in and help. Because we’ve ALL been there. We know the fear of a new diagnosis. We know the uncertainty of medical emergencies. We know you’ve had no sleep. We know you don’t know how you’re going to get through today, much less this week.
We don’t hesitate. When families new to the journey seek guidance, seasoned veterans become shaman to the newly initiated. When a parent seeks advice on an unfamiliar diagnosis, fellow families chime in. When a child is in critical condition, fellow parents lend support with visits, gift cards for food, prayers and anything else they can provide. When a child is desperate for certain medical items, we all take inventory and send them our spares. When disaster strikes a region, we rally, organize, pack up our extra supplies and get them to families in need. When one of our kids earns their wings, we all cry in unison.
II would never wish this life on anyone. But what I DO wish, is that people in general, could learn from us. Our circumstances have completely stripped us down to what’s real, and what’s necessary to survive. We are in it for love. And for each other. We are past the petty. We are past the bullshit. And we have embraced the “We’re all in this together” mantra. How can we take our collective experience make a difference in the greater good for everyone? Because it would be really cool, if everyone knew how cool it was, to be us.
~ Debra C.
Trach Mom