Brown and Pink Polka Dots : Feeding Tube Awareness Week 2018 Day 4

Today's FTAW topic is Support:
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters.

I have heard a lot of crazy things in the past 5 years (5 years ago today was Jilli's first hospital admission), from crazy "treatments" people have suggested, to hurtful comments, to people being unsupportive... but we try hard to focus on the good.

Yesterday as I was being interviewed at RMH Ali commented how it seams we always have more people that we are talking with and interacting with, and I joked that I feel like my facebook friends list often grows when we are at rmh because there are new people we have connected with, which is great. Having a degree in special ed I knew about special needs, but it is so different being in this community. My circle of people around me has grown to include so many amazing people with amazing stories. The special needs world is like a family, or club... we protect each other, help brainstorm for each other and support one another. While we didn't go into parenting thinking this was a group we were going to belong to, it is a group of people I am so thankful for.

Another thing I was talking with Ali about yesterday was how grateful I am for the community that has come around us and how they have taken to giving back to the special needs community too... from the band-aid drive, to serving meals at rmh, to toy donations for chw and rmh, to helping us directly when need for things like Jilli's chair and meals when we come home from the hospital. We are SO blessed by our amazing community and I don't know how to express my thankfulness enough. I am thankful for everyone who reads this blog and grows in their understanding about the medical world, I am thankful for the people who take that a step farther and join us in different things to give back to the special needs community.

I wrote a post back in November about different places to support people with special needs. You can find that post HERE. If you are looking to help families with special needs this is a great list of places that we find helpful.

Also, our band-aid drive is coming to a close very soon. We are delivering the band-aids on Monday. We are over 5,000 band-aids, but would love to make it over 6,000!

Last night for me was a little emotional when my "on this day" popped up and it was at picture of Jilli her first time in the ER. That was a very scary day. Man I had no idea of the journey ahead that day, but what I can say is 5 years later the medical things are not as scary. Feeding tubes and oxygen tanks are normal at this point. It has been a crazy journey and I want to give a huge shout out to Brent for being my partner in this journey. He is an amazing dad and I am so thankful for him. Also thank you to our friends and family who have been with us along the way.

The girls wearing their run/walk shirts for chw today

I made a Tubie Friend for a friend this week

I decided to get my hair done on Saturday... and had a massive allergic reaction to the product they used. It is slowly getting better by the day, life always stays interesting here! Thankfully yesterday I was able to cover most of it with how I did my hair and my clothes.