Praying for people in public

This is one of those posts that it is good I let a few hours past since the post because I can write with more grace then I could have a few hours ago.

Lets lay down some ground info here... I am a Christian... have been my whole life... attend church most Sundays... at my birthday party there were multiple people who were on staff at a wide range of churches... I don't hate church. Christians, ect...

So let me explain what happened today...

I was sitting in a food court at the mall with my mom and two kids. My mom and I were sharing a plate of Bourbon chicken, Jilli was coloring and Lydia was playing on her iPad. My mom and I were having a conversation about a Christian podcast which turned into a conversation about dreams and theology. If you were eavesdropping on our conversation you would have known that we are Christian. We were not having this conversation in public to be showy, it was just natural conversation.

A woman and her two kids walked up and to our table and stared at us until I looked up. They asked if they could pray for the kids. I took a deep breath... this has not always gone well when people have asked this in public, in fact it rarely has, but I try to give people a shot. I asked Jilli if that was ok with her since they were asking to pray for her (I don't think they noticed Lydia's oxygen too). Jilli said sure. The woman then asked if she could touch Jilli and Jilli said no... thankfully she asked first and she respected the no.

But then the prayer went like so many public prayers have gone before... it asked God for my kids to be normal. Man I hate that word... that word is so often used as a weapon at my kid, she HATES that word because people always use it to point out her differences, and the ways she is not "normal." The whole prayer was super showy in the middle of this food court. And the whole thing was about all the things "wrong" with my kid...

But here is the thing... this person didn't know what was "wrong" with my kid because she didn't ask. There was NO attempt to get to know us. There was barely any chit chat.

This person ONLY saw my kid as a problem...

A good deed she could publicly pray for.

I am a Christian and it felt icky!

I have been in Christian circles long enough that I have a feeling that now it is going to be a boasting about the sick little kid she prayed for in the mall because while these situation are often talked about what the person did for the sick kid, its almost always really about the person praying and as the person being prayed for that is felt!

We have had one or two public prayer situations that didn't go this way but that is rare. Most times I feel icky after these situations. Today I wanted to cry but not in a good way... in a hurt way. The thing is that this has happened so many times that when she started praying out loud I started silently praying that the words that came out of her mouth did not hurt my kid.

I am not against public prayer.

But it gets a bit exhausting to have this keep happening.

After they prayed they walked away right away. We were the only family they approached. I asked some of my friends who's kids don't use a wheelchair or have oxygen and NONE of them have EVER had this happen. I get that what society views as our "stuff" is very visual but I am not sure why that means this yucky situation has to keep happening. The things that are hardest for our family often isn't the visual things you see, but these people never stop and ask how they can pray for us. It is often also done with a level of "we are more spiritually along then you" or its assumed often that we are not a Christian but they NEVER ask. Apparently because I have two medically complex kids I can't have a relationship with God... thats horrible theology!

I feel like one of the things God is asking of me is to help change the conversation about how people that are medically complex are viewed by society because our current "Christian" view often sees people as less then. We are still stuck in Old Testament thoughts.

Once again, I am not against praying for people, but here are some of the things I am wrestling with...

-When this happens it often feels like the prayers Jesus was talking to the pharisees about, they kept praying on street corners and making a big deal about it... today felt like a show
-We need to build relationships with people. We need community. My friends know how to pray for me and I know how to pray for my friends. I know the heart things not the surface society level things to pray for them. At least have a semi conversation with someone before asking to pray for them otherwise the person feels like a token.
-I fully believe that God can use all sorts of things for His good... but I also think that sometimes His people get so focused on good deeds that they miss things and other people. I am sure this person had good intentions, I am not questioning that, but somehow they also got the message somewhere that this was ok, and it just feels like a really shallow showy Christianity. I am not questioning that this person loves Jesus... I am sure that is their motivation but sometimes we loose people in the goal of evangelism.
-Sometimes we have a very western view that "I am the perfect person to come in and solve this situation" because we often see the gospel with a colonization mindset even when we don't know that we are viewing it that way. Sometimes it is hard to pull apart the gospel and the American lens.
-I also know that some churches really view my kids as less then. Some churches kick people out if they pray for a family like this and the family is not "healed." Often these churches only care about someone's physical health and not at all about metal and spiritual health. There are so many people who don't feel like they can go into a church because of their medical needs and by that we are selling the gospel short.
-I don't see this as how Jesus approached people
-if the only way my children hear people pray for them is listing all that is “wrong” with them to God then maybe my kids will start to think that is how God views them too if that is how His Church views them
-I think that just because I have two kids with special needs doesn't mean I shouldn't also get to eat a lunch with my family calmly... just like everyone else  
-It pisses me off when people only see my kids for their medical needs... they are SO much more. They are amazing people. Please don't sell them short.
-We have people all over that pray for us, people from many different denominations, this is not a "my way is the only way to do things" issue, this is a people and heart issue. This is one person's words during prayer hurting another person. 

I don't have a great wrap up here... maybe a plea that this stops happening like this... maybe an ask to have this conversation with other Christians you know... because if this is hard for me, imagine how it feels to someone who doesn't know Jesus.

Wow

So I wrote several months ago about how I would love to have a birthday party with a bunch of friends but that I worried that if I through a party for myself that people would take it strangely. There is a lot of mental stuff to unpack there but thats a different story...

I planned a work weekend at our house for this weekend. Right now this house feels like the more work we do the more things we find that need to be done. Like I just want to cry with this house at this point... I want to be done and be able to move on... but we have to walk through this first. Last week we got an extra project when we had a micro burst come through with 80mph winds and lightening that struck a very large tree in our yard. Our yard was a mess from the storm and we had to call a tree guy out because of the multiple broken branches still in trees and one branch threatening to go through our house which causes us to have to leave our house for a few days out of caution incase it did go through the living room (mind you Brent flew to Canada for work the day this all happened). My cousins and a couple of friends came over last week to help me with the storm mess so that the tree guy could work and then he took down more tree parts so we have more to take care of. So our work weekend plans changed a bit and two very kind friends came over yesterday yesterday and helped move more wood and helped to clean off our back decks and our back gutter.

About a month ago my Aunt Sandi called and said that she had this weekend open up after some plans were moved and she wanted to know if I was interested in a craft day with a couple of my friends to celebrate me turning 30. I said that sounded great. My Aunt Sandi is the ultimate planner of fun events and several years ago she planned a crafting weekend for my friend Jaime and I that was amazing. So I thought that was what was happening last night and I had scheduled for people to come help at our house because I thought that house projects could get done without the kids around... so I posted on Facebook asking for help for all day yesterday... I had been told to invite a couple of friends to the crafting day so I knew a couple of my friends would be at my parents. Aunt Sandi called in the morning and asked if there was any way that they could have Jillian at 2 to help with a surprise for me and I without questioning said sure. It was my Aunt Sandi, I was sure she had something fun planned to go with our crafting time and wanted to include Jilli in getting something ready which I thought was very kind. Jilli loves to cook and bake so I figured she was including her in that. So I met my mom at Target and my mom took Jilli to their house and Lydia and I went in to pick a couple of things up. They had said to be at the house around 3 so we headed to my parents. As I came down the street there were a bunch of cars but I knew some friends were going to be there and my parents live on a weird street where just adding a couple cars can make it look full so I really didn't think anything of it until I looked at my parents driveway and saw that it was full of people with birthday signs and pictures of me... at first I thought it was just the people who I knew where going to be there but then as my eyes focused in I could see it was a whole bunch of people.
They had pulled off a surprise party! I was truly surprised! That showed by the horrible park job I did lol!
I got out and hugged people while I was in shock. I went up to the deck and it was all decorated like Mickey Mouse and there were crafts and games. Inside the house was filled with a pasta bar and tons of yummy food (Aunt Sandi is an AMAZING cook!). For dessert was a selection of different fun cup cakes and Napoleon (a custard and pastry dessert that I love). It was a great afternoon/night of hanging out with friends!
One of the things that I loved thinking back on all of the kid there was the wide range of different abilities of the kids there and that my life is just filled with people with different abilities... there is no tokenism about that, these are the people that I love and are in my life and I am lucky to get to love, but I love that thats how my life looks at this point. Its not some yeah me thing, it wasn't even something I noticed until this morning because those kids all mean a lot to me and they just are who they are, and those friendships are just genuine, no agenda there, but I love thats how my life looks at this point... that when someone thinks to throw a party with the people that I love that it looks like such a wide range of people. Maybe I'm doing a couple things right if people feel like they belong in my life.
Instead of gifts they asked people to bring things do donate off of the RMH wish list which I absolutely loved!!! RMH means so much to me and I love that they decided to do that!
I also love that my kids played with friends until their clothes were so dirty they needed to change! That is what summer is all about!

So thank you to everyone who had a part in the party! I am so very thankful! I am still blown away and feel so loved and seen which is one of the best gifts you can give someone for their 30th birthday. I am blessed with some amazing people in my life!

Today we really are having a work day lol! So if you are around and open to helping we are starting at 2 and would love your help! 

Representation matters

I am a white woman.
I grew up middle class
My heath needs are pretty easily masked.


And until I had a daughter with special needs I did not truly understand why representation in books, TV, print ads, store displays and toys matters.

Sure I thought it was cool. I grew up with a mom who worked to help people with disabilities have independence in their homes so wheelchairs and ramps were not uncommon in my life, however it was just a social level of thinking that something was cool... I didn't understand the depth of it. People looked like me all over the place.


But Jillian notices EVERY time someone looks like her. She lights up every time she spots a child in a wheelchair in a children's book, even if it is an unnamed character. Her favorite episodes of Sesame Street at the ones with Tara. She shows all of us anytime a print ad has someone with a disability pictured. She loves to watch the Daniel Tiger and Mr. Rogers episodes with Krissy.

I use to be a classroom teacher so I have a large collection of children's books so when we are looking at new books for our house I am a bit more picky because I want books of quality and one of the first things I look for is to see if there are people with different disabilities and people with different skin colors in the book.


Because I see now how much all of the matters. I see how a picture of someone who has disabilities in a book tells my child she belongs in this world. I can say it over and over again, but there is something bigger when the world says it to her too. Kids trust what their parents tell them however they are always testing what their parents say against what the world is also telling them, so I need the world to also tell my kids that they belong here too, and an easy place we can do that is by representing all people in books, television, ads, and toys.

I knew that a new wheelchair Barbie had been released. My kids play with my wheelchair Barbie (what my kids call this doll) when we are at my parents and they were gifted an old wheelchair Barbie that was bought online that came out many years ago, however there has not been a Barbie sold since my daughter was born that uses a wheelchair. But I wanted to give my daughter the joy of seeing a doll like her in a store so we waited and decided that whatever store we found the doll at first on a shelf with the rest of the Barbies would be the store we bought it at...

Today was the day. We ran to Target after church to pick a couple things up quick and were going through the clearance isles to find things for RMH (they need baby dolls, 10in + sized stuffed animals and 18in dolls right now) and came across the new Barbie who uses a wheelchair. My kids literally squealed! While my kids don't need any more toys and I am spending time this week going through their toys, this toys was different... this toy was special... this toy makes a statement.

So thank you Mattel for making this doll. Thank you Target for selling it in store... that is HUGE!

Now here are my challenges...

1. Buy toys for your child that represent ALL people. Use your dollars to show companies that they should make more toys like this Barbie
2. Stores, there is an African American Barbie who uses a wheelchair... carry her in store too!
3. I know it is hard when you are white and able bodied to understand why representation matters but I promise you it does SO much... so please listen. Please don't blow this off because you don't understand. Please stop to listen here and then act with your words and your dollars and what you teach your children.
4. Mattel, I would challenge you to keep growing in diversity. There are A LOT of kids with disabilities in the world, and the parents of kids with disabilities are really fast to support things that represent our kids. I love that you sell a few different kits for American Girl dolls like the diabetes set or the arm crutches, and we are so thankful for that representation, but lets keep going! Bring back the wheelchair for Little People, make a Girl of the Year doll that talks about disabilities (I'll help!), use your Polly Pocket line to include more people... you have so many toy lines, and there are SO many possibilities! Other toy makers... lets make this a trend, together we can work together to make the world more inclusive and it starts with the toys our children play with!
 

When we got home and I posted a picture of Jillian with her new doll she was so worried that what would happen if I posted the picture of her with her new Barbie and other kids wanted that Barbie too and what if the stores were out of stock. We bought her new Barbie at the Target near our church so to help her anxiety we looked online and I showed her that they were in stock at other Targets too... and she noticed online that there is also a new Barbie with a prosthetic leg... and its sold IN STORE at the Target by out house... you can guess what this little girl is saving up her money to buy next! 

  

House project work day

A couple people have asked us how they can help us get the house ready so we can sell it and we have just felt so overwhelmed by it all that we have not had an answer but we do now... Our goal is to work really hard in August to get as far as we can with the projects as possible before we go back into a bunch of medical stuff in September...

Here is reality... Brent and I stink at asking for help... we have mainly been working on the house ourselves for 7 years with help from my parents and several years ago we had some friends help with stuff when we were doing a few big things...

The bigger reality here is that we really need to get a lot done here, we really need to move for the best for our family, and we know that time for us can get crazy fast. For us it is not a lack of will for wanting to get stuff done, we have been working on the house for several weekends in a row right now... and like most house things, once you get started things pop up... like our lawn mower broke 3 weeks ago, Brent has spent several nights working on fixing it which was not in the plan right now, it was almost finished last night and then the last part broke so now we are waiting for the mail today so hopefully it can be fixed soon so we can mow the lawn.

So we are asking for help!

August 17 from 10-6
August 18 from 2-7

The girls and I will not be home on the 17th so we are hoping that a lot can get done in the bathroom since their lungs do not always like being in the house while construction projects are being worked on.

Here are the things we need to work on that weekend:

-Bathroom- Brent is working on mudding and taping this weekend. I am not sure what step the bathroom will be at in a couple weeks but I am sure there is a lot to be done in there!
-Cutting up a tree- we have a tree that was taken down late last fall and then Jilli ended up in the hospital and we didn't get it cut up before winter. We don't need the wood so you are more then welcome to cut it and take it.
-Power wash and stain decks
-clean out gutters- like there are plants growing in them :(
-Taking boxes from the basement to Goodwill- we live in the country so there have been mice in the basement. Most of the stuff down there was moved down there when we moved here and we have not been touched in in 7 years... if we have not touched it in 7 years we don't need it so the stuff needs to go. The closest Goodwill is about 20 min from our house.
-Touch up paint in down stairs bathroom
-Yard work- mainly trimming stuff that is overgrown


We will have stuff for lunch on Saturday (sandwiches) and will order pizza for dinner Sunday

Please also remember our house is crazy at the moment and we have two young kids and there are medical supplies all over the place... as much as I would love it to look like a show house right now, the fact is that it doesnt and that is one of the biggest things between me and inviting people over, I feel like it need to look like a show house before we ask for help but then we would not need help, so please understand its a bit crazy here!

If you are not able to help that weekend, I would ask for prayers. We are feeling very overwhelmed by this process. We have never sold a house. Figuring out selling and buying is keeping us up at night. It’s one of those things were it feels like we are adults so we should have it all together but the reality is we are overwhelmed so prayers that projects go quickly without more twists and that selling, buying and moving and quick and easy.


If you can help please let us if you are able to help at all

Let them be kids!

Part of the goal of this pause for medical testing is to let the kids be kids. So I am trying to be intentional about how I do that. So we have had a few play dates recently and fun days planned. Its so nice to have the museum membership so we can go with friends and it is not an out of pocket cost each time so we are going more often. We also have had time at home where they have had time to be board... that is a kid thing too! I have been working on purging stuff... like I took a room that had way too much stuff in it and sent most of it to Goodwill!
One of the things are are noticing is how much running around wears the girls out, its something we have always known but something that is more obvious when you have multiple play date days in one week. That is good data. Our PT/speech team is working with us to document that as well. We are also going to do another eval for Jilli for OT. Her body only handles weekly therapy in 2 areas at a time and speech is still really a need because there is some really perplexing things going on there (the gaining and loss of skills has been really obvious lately and the pendulum is swinging a lot right now especially in speech... there is no logical reason for her to loose skills that she had). But there are some OT things we need to work on some more so we are going to do an eval to get an idea on some things and then they are going to give me some things to work on at home with her.
We are also going to start school this month because September is going to be busy medically so I want to get a head start and I am seeing some summer slide happening and we don't have room for summer slide in some areas. In other areas she is making gains in some things that she just hasn't had time to work on before and that is really encouraging.
My body has been reminding me some more of its "stuff"... every time I work on deep cleaning I am breaking out in hives which is making work take longer... my back is also a hot mess tonight but those are also the things that come along side connective tissue issues... plus its summer so I have had more dairy and corn then my body is happy with... that is on me.
I did get a call yesterday that we are now meeting with that new team this month. Honestly my first thought when I found out was that they were desterbeing our peace... how 9 of me... but in my head we had August off of most medical stuff and throwing a big meeting in took me wrapping my head around. Its funny because I think any time before this year I would have felt so happy and thankful to be getting this appointment but after this year I feel cautiously optimistic about it... honestly at this point in the year I am jaded in a way the last 6 years had not jaded me. That I will need to work on. I need to give this team the best shot. I need to walk in with an open mind. This part of the journey feels different to walk through... but we will walk.
Last week we also helped pack up our friends and send them off back south. We helped them move in 2 years ago but seeing them go was harder! We know they will be back every few months but goodbyes are always hard even if its just for a while.

Here are some pictures of our fun lately! 

I ended up having a latex reaction on my birthday so we ended up spending some time at my parents that was not planned so Jilli and my mom made me a gingerbread Starbucks

Jilli playing with my grandma's light brite

Lydia and bumpa playing guitar

Lydia after 20 min in the pool... its SO hard on her body but she loves it so much. She slept for over 3 hours after swimming

I treasure this pic Linda took of the girls and I at the pool... I don't have tons of pics of the girls and I and this one just feels special

Play hard... be exhausted... but sleeping at night still isn't her thing!

Jilli has been LOVING this coloring book

We went to DQ to thank them for Blizzard day for the hospital

The really sarcastic part of me wants to send these all to our one team member who thinks we don't do anything but never asks us....



If you missed my last post you can click here to read it. Facebook was being weird with the link