We live our lives in such a way to help show the world that people with medical needs are people too. They might need some extra help from different devices but at the end of the day we are all people... and that alone should be enough to unify us.
What obstacles have we overcome...
I'm not even sure where to start that list. There are so many things we have worked through over the last 6 years. So many things about myself that has changed. So many places I have grown...
And then there are place I am still working on.
We still don't have our itinerary for NIH that has all of the instructions on it for what to do when we arrive 😱 and I need to follow up on that... but I hate conflict or anything that looks like conflict or anything that might be perceived as conflict...
I'm sitting here frustrated about the itinerary but also equally as frustrated that it means that I need to spend an email asking where it is and be a bit assertive today and that makes me even more stressed!
See I am a person that when a doctors office doesn't come or medical info doesn't arrive on time I just figure the person is busy and I don't want to bother them. I hate reminding people of things not because I am mad at them but because I don't want to inconvenience them. This isn't played the other way though... I don't get upset when people remind me of things... so I am not sure why it gives me such anxiety to remind other people.
To deal with that anxiety yesterday I wrote out one of my new favorite songs in gel pens... in high school I covered my notebooks in song lyrics... it helped me to relieve stress and in the midst of it building yesterday I remembered that old coping method and did that to help calm. Jilli and I build one of the Playmobil sets she got for her birthday... working with my hands in stressful moments can help.
Yesterday we also picked up all of the medication we will need for the trip for the kids. Today my goal is to be finished packing.
Yesterday the kids also did their Tiny Superhero missions for this month. The mission was to decorate a heart about things that fills your heart and what you love about yourself. It was fun to work on it with the girls.
We also put the Feeding Tube Awareness tattoos on our wrists. The girls thought that was really cool. I think one of my favorite pictures that shows community and support is a picture from Jillian's first birthday party... its just a picture of the arms of our friends with the feeding tube awareness tattoo.
Tomorrow is Saturday and we would LOVE it if you have participated in the chw walk/run with us and have one of our team shirts that you wear it tomorrow and tag us in it online. Lets work together to spread awareness.
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