Feeding Tube Awareness Week 2018 Day 4

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.


Everyone has a story....

Everyone has a life circumstance...

Everyone has hard things...

Everyone has moments that will feel like the weight of the world is crushing them...

Everyone's life is impacted by the lives of the rest of the world...

Everyone is interconnected...

Everyone needs others...

Everyone needs love...

Everyone...

I normally write all of the Feeding Tube Awareness week posts on the Sunday and touch them up or add to them during the week... but I typically at least have all of the posts started. (the prompts are on the website beforehand)

This year I didn't do that. It was not some long thought out plan but kind of a mix of a few things...

1. This week is calmer then some of the other ones have been... I'm not working and many years we have also had big doctors appointments during this week, but this year we have not. I was actually thinking the other day about this week over the years and all of the different things that have happened. We have had a hard genetics appointment and happy advocacy days. We have hosted amazing fundraisers and teamed up with great organizations.

2. We have been celebrating Feeding Tube Awareness Week since 2014... thats a lot of blog posts so I kinda know the flow of things and what is going to be talked about. I look at things from different angles each year and add new things, but I've covered this topic enough that it does not feel like as much work.

3. Something I learned in Advent this year was about the waiting and I am trying to learn to not rush past waiting... that sometimes that waiting has very valuable things to teach us. I am a destinations person. I don't care much for waiting. As I was packing tonight I felt like I was being reminded that sometimes the journey is just as important (and sometimes more important) then the destination... even though sometimes the journey is hard. I wanted to document my feelings through this week as they happen because we are coming up on something huge... something my heart is very anxious about and for. I wanted something to document the feelings of this week, because they are important too.


 I am writing this post on Wednesday night (most of the others I have written the morning of but that is hard with homeschooling)

Tonight I feel emotionally drained...

Its a mix of things...

The girls therapy place flooded this weekend and we found out last night that we could go to a different location today. Something I didn't realize at the time was that a lot of the equipment from our old therapy place that closed over a year ago (I've been in this building multiple times but this is a section of the building I have not been in before). This old location was close to our house and small. We spent a lot of time there and it was really hard when it closed. The place we go now is owned by the same parent company but is 45min from our house... the location we went to today was over an hour away. I was not expecting to see the old playground and equipment from our old place. It brought back a lot of memories and emotions and I was not expecting that. There is still hurt about our original location closing (it was not a people centered choice). As silly as it sounds seeing that equipment brought back so many memories... the good times... the hard times... the conversations about delays... I was in that clinic when we found out that Brent's grandma was dying (a few years ago, before Lydia)... there are just a lot of weird feelings there that I did not know where there. Its one thing when you know something is going to feel hard but it is another thing when emotions come out of a place that you had no idea was burred in there. It sounds like our normal clinic will be closed for at least 6 weeks!

When we arrived to the therapy place we went to today there were a lot of police cars in the area in odd places. I knew there had been a police shooting in the area that morning but I had not heard about the condition of the officer. When we left therapy I knew the answer before I looked at my phone because there was a lot of police on the medical complex campus. I looked at the news and saw that the procession from the hospital to the medical examiner was getting ready to start any moment. I looked around and saw that going where I needed to go was going to be impossible so I decided that instead of even trying to navigate around before the procession started that we would just stay put. I was not in any rush to be anywhere. We can either view life as inconveniences or we can stop to remember the humanity of life and use an unexpected moment to slow down.
Lydia actually fell asleep before the processional started (she slept until 5:30... this is her second day in a row taking a 3 hour nap... that has never really happened in her life... I'm still really hoping this just means she is growing.
When the processional looked like it was starting I asked Jilli if she wanted to see it. Part of me was a little nervous because I did not know if sirens would be on and Jillian is very sensitive to loud sounds so I knew if I was with her I could hold her ears for her if she needed me to. I went around to her side to get her and the procession started and there were not sirens so I pulled her out of the car seat and put her on my hip and we watched the procession. We talked about why the procession was happening. We talked about why all of those cars were there. We talked about how those cars were from all different places from around the area there to show support and love. We stood in silence too (the procession was very long... I am not sure how many minutes it what but I know I have never seen that many police cars in one line before and this is not the first procession I have seen) Tears rolled.  
It was one of the moments as a parent that is key to teaching our children. It is one of those moments that even though you cry as you talk, explaining is important. Those are the moments that are easy to rush past because they feel hard, heavy, and complex but they are the moments our children need us the most.
Jillian started to get cold before it was over so I put her back in the car. After the last cars passed us I planned on leaving but the problem now was that is was also 3pm at a hospital... shift change... the interstate is closed for the procession... and there was a back up of cars waiting from during the procession... I looked around (and saw ambulances struggling to get through the mess) and decided that once again, we were in no rush. We did not need to get into the mess. We turned on some music, I gave Jillian the iPad and we waited for the traffic to let up a bit... other people needed to be on that road more then we did.
Once we were done we popped over to rmh to pick something up and drop something off and then we headed home. Brent and I packed our clothes tonight. One step closer. My heart feels a bit anxious tonight because I was told we would get our itinerary by today at the latest and it did not come. I am sure there is a reason... this who trip though is me giving up a lot of control... control of travel... control of lodging... control of doctors... control of tests. I am working hard at this but it isn't easy. I am use to being the one steering this ship and right now it feels a bit like I am standing on the deck knowing we are going towards something but missing the plans. I was listening to a podcast with Bob Goff today and he was talking about how he doesn't look at his calendar to see what is happening the next day and how he plans his time in the moment... Bob and I are very different people. I feel better when I sit down with my month view calendar and write everything out in pencil so I can see it.
I tried to unwind tonight on social media and well that went as well as social media seems to go...

John Mark McMillan Tweeted Last night:

"My facebook feed says Trump is a savior.
My twitter feed says Trump is a monster.
My instagram says everyone's life is better than mine."

Thats about how my Facebook and Twitter look like (I don't have instagram) with a bunch of abortion arguing mixed in both places. My head kept swirling with opinions and thoughts... I'm a person who takes everything to heart and a justice person... but justice as in "who is not being loved in this situation" and that is who my heart breaks for. I am a feeler and an action step taker but I knew I didn't have it in me tonight to debate (I think I am likely a 9 on the enniogram with an 8 wing). All I could do was be sad. I sat with pride watching someone from an advocacy group that we share our story with testify before congress today but then I cried as I heard her speak and realized that once again it was a special needs mom telling the world that kids like mine have value in the world. That sucks to think about that and how often it feels like I have to prove that kids like mine deserve to be treated like real people too.

Tonight I feel worn... it was an emotional day.

And I type this with sweet little eyes looking up at me.... sweet Lydi is curled up on my leg as I type.

And all I can think about is how much better the world would be if things were no longer such extremes. How you don't have to choose political sides and agree with everything they do or say... how you don't have to agree with anyone 100% percent to still be respectful. How criticism of something doesn't mean that you hate something... often that it is because you love something and care about it. That you can be critical and loving. That you can be hurt and caring. That there are a lot of different ways to love people. That all people have value... yes every single one. That death is tragic. That pain... and sorrow... and joy are all able to hold the same space. That looking out for your neighbor is always the right thing to do. And that love is always the answer.

I love this picture of Jilli and I tonight... I also really dislike how she feels about it. I took it and then she looked at it and commented how she didn't like how she looked in it... my heart felt crushed... she is 6.. she shouldnt care how she looks in a selfie with mom

I also delt with messages today that we have some waver money that is going to pay for some equipment we need for the girls... we have the approval... we just cant get a company to order us what we need. It has been weeks upon weeks of a mess. We are not looking for a discount... we just need a company to order what we need... it has been an absolutely crazy situation. And it makes me tired.