Sunday, November 25, 2018

Charities

We have come to the giving time of year and one of the main things I want to use my platform for (doesn't matter if one person or a lot more read this... if someone listens to you, you have a platform and therefor a responsibility) is education. I told someone this year that my life circumstances are such where the needs of children with disabilities is a very high priority to me. Because of the shoes I am in, I am able to see needs and organizations that impact families with children who have medical needs. 

Giving Tuesday is coming up so I wanted to highlight some amazing organizations:

-Ronald McDonald House: I lost track a long time ago how many nights we spent there this year however I found out recently that in the last two years we have spent around 100 nights at rmh! RMH means a lot to our family. 
To quote a speech I gave about RMH a few weeks ago "To us Ronald McDonald House is a lot more then just walls and beds. I have to brag about the staff for a moment. Anywhere can have walls and beds, what makes this house special is the people inside of it. As a mom it touches my heart so much to see how the staff loves my girls. From singings silly songs with them, to dance parties in the great room, to including them in everyday things, the way the staff treats my children is incredible. When Jillian grows up she wants to work at Ronald McDonald House on Saturdays. This summer the managers at the house made her a sign that said little manager and let her help with little tasks. Jillian tells everyone about being a little manager"  

Things you can do to help RMH
  • Donate toys >$10 unwrapped to the house for the magic room
  • Donate food
    • Butter (stick and tub)
    • individually packaged snacks
    • kids cereal 
    • easy to prepare meal kits 
    • individual oatmeal packets
    •  
  • Copy paper
  • New stuffed animals
  •  Board Books
  • White clothes hangers 
  • Coffee (k cups and ground bags)
-Tiny Super Heroes: We have a super hero who lives in our house. She LOVES her Tiny Super Heroes cape. Each month she is mailed a mission that helps her learn coping skills for her medical needs. Tiny Super Heroes raises money to provide children with medical needs capes and starting next year all children in the program will get to do the missions (before there was a monthly cost).

-Gracie's Gowns: While we love astronauts in space ships (provided hospital gowns) there is something special about having your own gown that have something you love on it. We have received two gowns from amazing friends who have made Jillian gowns, so we do not have a Gracie's Gown however we understand how wonderful your own hospital gown is.

-Make a Wish: We are currently waiting for Jillian's wish to be granted... and we also know several friends who have either had a wish granted or are currently waiting for a wish. Wishes are expensive and take a lot of money to fulfill.

-Give Kids the World: About half of all wishes that are granted from wish giving organizations are to go to Disney World. When a child wishes to go to Disney World they stay at Gives Kids the World. This is an amazing place! To find out more watch this video: https://www.youtube.com/watch?v=ftjNDN34fqM

-Sing Me a Story: This year Jillian was able to have a story that she wrote turned into a song! She loves her song and it means so much to her. This is an amazing organization using the power of music to help children. To hear Jilli's story and to learn more about this organization: https://singmeastory.org/stories/thunder-and-the-rainstorm?song=920

-Team Up with Families: This is a great Wisconsin organization that helps families in the community with many different things. They run a lending closet for medical supplies that we have used many times. We also were able to attend their pool party this summer which was great to connect with other families!

-Feeding Tube Awareness: This site provided so much help and support for us in our early days of tube feeding. They help families adjust to life with a feeding tube and they work with providers to educate what life is like outside of the hospital with a feeding tube.


Not everyone can do everything... but everyone can do something...

There are a lot of organizations above and all of them help children with medical needs... which one do you feel most compelled to help? 





Sunday, November 18, 2018

A tale of a few weeks and head mumbles

I am tired... like soul tired...

A friend of mine looked at me at dinner a week ago (happy 30th birthday babe!) and her comment was that I looked tired... not the kind of tired where sleep would fix it.

Most people would think that was a rude thing for someone to say, however honestly in that moment it spoke truth and let it out into the world... I try to hold it all together but the truth is my soul is a bit tired right now...

and that is ok...

I am not a fake it til you make it person...

if I don't admit the soul tired then it is just going to get worse.

Last night I was sitting curled up with a blanket trying to hold off the feeling of the world crushing me. The enemy took lots of shots at my brain last night... self doubt was strong.

When we are gone I am in go mode. I do what needs to be done. I don't cry in the moment... actually I was told while Jilli was in post op a few days ago that there was a level of joy about me that is odd to see in the hospital... I am a doer in hard moments. Its not that I am bubbly, but practical. Things were not going the way I wanted in post op and this nurse was right, I had lots of reasons to be really mad and no one would have been shocked if that frustration was vented at them because that is very common... however God has blessed me in those moments with being able to still be loving to the people around me even when I am frustrated. To this nurse (who was not even our nurse) this was so out of the normal. I was peaceful in the midst of craziness.

We have spent 31 of the last 45 days at RMH.

And transitions between here and there are hard. Its hard to explain. Its not that I have a different life there, but life is different there. There are different challenges that are then at home. I don't have to worry about cooking dinner there but I do have to directly supervise both kids at all times. Life is also full of community there. It is not uncommon that there was at least 8 of us eating dinner together. Jillian's best friends are at rmh and over the last two weeks all of her friends have been at rmh at one time or another so we spent a lot of time with friends between appointments. That also means loving people and living in relationships with them. I am also not a person to just sit around so when we are at rmh that means we pitch in and help when we can in different ways around the house.

Home is a different beast. Home means time to rest which is needed. Home means the adrenaline calms and I am left to sit with my feelings and emotions. Home means feeling like I see my failures even more. I can make excuses for things when I am busy, but I have little grace with myself at home. I want the bags unpacked as I walk in the door. Home means a waiting to do list. I want everything clean and organized. I want to be the perfect mom and wife...

Last night we went to set up the Christmas tree. Jilli has been asking for days and its how we got her to stop crying as we left rmh. We got the tree up and noticed a lights problem... we ran to Walmart for supplies and 30 replacement lights later the tree was even more of an issues. There is some serious electrical issues going on. Jilli handled it well for how incredibly sad she was that we were not able to decorate the tree. I felt heartbroken for her and as I sat curled up on the couch looking at the very likely fire hazard of a tree I felt the feeling of failure setting in.

It spiraled fast...

and after a few short minutes my brain was in a place where I wanted to cancel writing the book (the first round of edits are back to me and now I need to work on corrections)...

All I could think about was how little I know about life... what gives me the place to write about anything.



This morning I woke in a different mood... thankful to be heading to church. We have not been to church the past two weeks and we had missed some weeks in October too...

Our church is not perfect and there have been times in the past two years that I have really struggled with faith but this morning I woke up thankful and excited to worship. I just laid in bed blown away by the fact that I was going to get to attend worship today.

And I am so thankful that I went. I'm so thankful that I got to listen to podcasts and worship music as I ran errands today.

And I thought about the life lessons that God has taught me in the past month.

The ways He has used me to love others and what a gift that is.

The people that allowed me to join them in their lives. This past Wednesday I got to witness one of the most amazing things and you only get to be a part of that when people give you the gift of letting you be in their lives.

I thought about Christmas. RMH was full this time. There is not often that I am at full places. In suburbia we like to think places are full and crowded when really we all have really large bubbles and take up a lot of space as individuals. But being in a full house made me think of Christmas... of there being no room in the inn... what that must have looked like. What that must have sounded like. I am pretty sure there was nothing silent about that night. I really want the new kids book out called The Silent  Noisy Night.

As I was driving around today trying to figure out a tree solution and kept finding "Blessed" art at every store I went in. I listened to a Podcast not long ago (Seekers and Speakers) that made me think about that word even more. I was already starting to have some of the thoughts that episode talks about but it gave me even more to think about.
I have known the Christmas story my entire life... however I'm also a "good girl" by the definitions of the world. I don't break rules often... I dislike personal conflict... I big into Godly (not worldly) justice... I am naturally a very charitable person... I check all of the boxes for "good"... however after realyl struggling with self doubt last night, as I drove today all I could think about was the word Blessed on everything and how much we as humans cheapen everything... like every little thing. We are good at cheapening Christmas and one of the ways we do that is by thinking we are good (my thoughts on us cheapening Christmas has nothing to do with the current Christian battle with culture on Christmas... that is just a convenient distraction). If I am good then I don't really need Christmas. As humans we mess everything up all the time... but there is beauty in what God is doing. He doesn't speak ANY words in vain. He doesn't waste words. As someone who struggles with small talk that hit my brain hard... He doesn't waist words... He speaks with purpose and love and His words have the power to create. We might have cheapened the word blessed in a very prosperity gospel way... but in reality God is so much more then we can even imagine.   

Someone said to me recently "Arn't all your weeks long?"

They are, some more then others...

The last few have seemed wacky between Jillian ending up with an intestinal blockage, several doctors appointments, ear surgery, tube placements that did not go smoothly, and a hospital say.

But today I am finding joy in worship.


I had the honor of speaking at an RMH lunch


Ballerinas came to visit!






Jilli made art!


Jilli ended up having to have 5 enemas in a week... some were 60cc!




coloring with friends

Doing school







Zoo class





The Amazing Laura reading a story

Happy birthday Brent