Button Buddies

When I got my first feeding tube (oh so long ago), my mom made me a “button buddy” by hand and to this day, that koala, Kevin, goes with me on every long trip to the specialists, every hospital admission, and is always arms reach away when I’m not in my “safe space” or when I’m struggling to feel strong and positive about my situation. For me, my buddy represents the love and support I recieve from my mom and the rest of my family as well as the strength and perserverence I have had since getting my first tube, my first diagnosis even. Kevin has two tubes and a central line now, and he’s been a trooper through it all.

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Kevin, my “tubie friend,” has a central line & tube(s) like mine!

My goal this year is to spread the love and the comfort that my button buddy has brought me with as many of our “newbies” as I can, and that’s all in thanks to our donors who have donated the tubes and stuffed animals or the funds for our animals and the shipping costs it takes us to send out our packages. We’ve had incredible donations from both AMT (Applied Medical Technology, Inc.)and eSutures Medical Supply Sales, both of whom are making it possible for us to send buddies to an incredibly increased amount of tubies this year than any year past ( we are still always looking for low profile tubes) and I just can’t wait to share this with you all….

 

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thank you AMT for the tubie bears!! what an incredible donation, I’m humbled and overjoyed.

When I was a little girl I LOVED my dolls. My first american girl doll looked just like me and I took her everywhere. We wore matching clothes and I even cut my hair to match hers (big mistake). For me, my dolls were so much more than just toys to have fun with, they brought me joy and comfort whereever I was – especially since I was so shy and often needed that “security blanket.” 

It’s not difficult to find dolls with wheelchairs, crutches, glasses, even diabetic kits and dolls who are beautifully bald, but feeding tubes? No. Those are still something that doesn’t even cross most people’s mind’s – and that is why I’m here.

With toys like these kids are able to share about things that may otherwise be difficult for them to communicate or to understand; through play they are able to learn from one another and see all of these new things in a way that is not scary or confusing, just kids being kids – all together, blind to any differences, and every child deserves that, tubie or otherwise. 

Button buddies allow children to be involved in as much of their loved one’s journey as possible in a way that helps them grow and understand the unknowns and the things they may be fearful of in the beginning. For instance, if the buddy goes to a child with a parent who is a tubie, the child can watch while their mom/dad is “eating” or doing fluids or changing the dressing and the child can use the buddy to do these tasks along side their parent! The same is true of siblings of tubies, classmates, and tubies themselves as they learn to care for their tubes and go through procedures, hospital visits, tube replacements, and feeds or medications that they have to do daily.

Buddies have the ability to provide comfort beyond the normal “safety blanket” item that most have and are attached to as children, it becomes another warrior in your battle and another supporter in your journey.

 

The beauty behind playing with these toys is that there is no recognition of the differences in toys, there’s no judgment, no prejudice, simply children playing together, learning as they go, growing, and that in turn becomes them accepting of one another with no qualifications, no recognition of the differences, just as they saw their toys.

When I give a button buddy to one of our little tubies and they see that tube, the light that comes into their eyes is just incredible. Suddenly that toy with a very expensive piece of plastic in its tummy changes how even the “littles” themselves see the feeding tubes! 

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You can so clearly see  that the  button buddy – a stuffed animal –  has the power to change how these children view their tubes from being a medical device that makes them different  into a part of their body that makes them special, that their tubes are not scary or gross or something to be ashamed of. When they fell in love with their Button Buddy tube and all, they have accepted themselves – tube and all.

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If you want to sponsor a Button Buddy you can do so by making a donation of anywhere from $12 (for just the animal) – $30 (for the button & “surgery”) – each bear is valued at $30 and shipping is $8-$15 each.

PayPal & Venmo are both @positivelyrachel.com

You can also purchase an animal and send that to us to use to create a buddy! We have an amazon list or you can pick one out on your own and ship it to us!

Here is our AMAZON Buddy link!

https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Xoxo

Rachel

 

Mermaid Soul

When I close my eyes, I go to the peaceful, beautiful underwater world at the lake. It’s dark and mysterious, the lake floor just deep muck squishing between my toes as I push off to surface like a dolphin, emerging just to take a breath before going back down, being engulfed by the water. You can hear the motor of boats before you see them, it is a soft, rhythmic stutter that comes and goes with the small waves. I could swim like that all day, every day and never be tired of it.

And then I’m in the clear, pure water in the rivers I swam in as a child, always searching for treasures in the slippery rocks under my feet, daring to go a bit farther, a bit deeper, conquering the current, being one with the water. There’s moss beneath my feet, the rocks I hit with my knees, and the little pinchers of crayfish. I find the deepest part and disappear for as long as my lungs will let me, sometimes swimming away and seeing if my family noticed how long I was gone, if they worried at all, other times just sinking into the water and just being one with it, listening, feeling the cold water and the hot sun, washing my problems away, down the river they go, I am at peace.

Chlorine. Salt. Sweat. The pool, the water I spent so much time in, practicing my strokes, competing, loving and hating it at the same time. I always seemed to tire before others, my heart rate was always higher, and even when I took my inhaler, I couldn’t breathe, but still, it was my passion. Summer mornings diving into the cold, cold pool, a shocking wake up call for swim team practice, back and forth, often toe to finger close to the person before me, the person behind me. When swimming for fun, not practicing, I will disappear under the water, swimming without coming up to take a breath, going deeper and deeper, testing out my lungs, happy and at ease.

One day I’m going to be free of central lines and feeding tubes and I’m going back to the water. I’ll live on the lake, I’ll travel and see the incredible beauty of the underwater world through my own eyes, scuba diving, snorkeling, swimming with dolphins, maybe hippos too – just no snakes. ☺ I can’t wait to return to my life as a mermaid, feeling the water, seeing the beauty, feeling no pain, just peace and happiness, such simple things.

These memories are worth gold, they’re what I need to have faith and they inspire me to make my dreams come back to reality. A piece of my soul belongs in the water, the thought of return comforts me when I need an escape, being my happy place when I need to disappear, and gives me hope and drive to find my way through my trials and back to my underwater world.