There is so much value in feeling understood. I have written a couple of times about the issues I have been having with my teeth and my absolute fear of the dentist.
I had an appointment for next Monday for a new dentist but they called this morning asking if I was able to come this afternoon so I jumped on it! I have been mainly eating foods I didn't need to chew for about a month (on top of giving up soda) and have lost about 15lb. While I wanted to loose some baby weight, a non chew diet was not a fun thing, but I knew I already had one chipped tooth and I didn't want to risk any more damage before I saw the dentist.
The appointment today went AMAZING! The dentist had learned about EDS in school and has worked with people who have EDS before! She really cared and was great with my dislocating jaw. By the time I left I was holding back tears from being so excited that someone listened and wanted to help me. We had a good conversation about the one chip in my tooth and it is not as big of a deal as I worried. We also figured out that one of the other issues I was having was from my wisdom teeth. I only have two of them but one is oddly shaped and it is sore at times when pressure is put on it because of how tight things are, it is the issue I have been having on the one side of my mouth. We worked together to come up with a plan that works best for me and my issues. I am so hopeful that we will be able to help my mouth so I have less issues!
Today I also got to deal with more insurance fun. For some reason our insurance company is saying that suddenly December 1st our deductible and out of pocket for last year became unmet!? Jilli took care of her deductible in January last year and her out of pocket not too long after. We met the family deductible and out of pocket when Lydia was born. Our insurance paid for appointments (meds are separate) at 100% from July-November, but then suddenly now we owe money for December because now they say it was not met. I spent Friday night arguing with the insurance company but eventually they agreed to have someone look into what happened. Well because of this bills started showing up. One was for Lydia for med supply and it has a $46 charge for an IV pole for Dec 1st. We got an IV pole in July when she got her supplies (her pump hangs on it at night, this is common practice) but we didn't get a new one in December for there to be another charge for it. I can buy an IV pole for $17 on Amazon and I get med supply charges a mark up for delivery and what ever else, but an extra $30 seemed a little high. So I called today... apparently our insurance company has been paying $30 a MONTH since JULY to rent this IV pole!!! Umm, no, that is crazy! This is not a special IV pole, its not even one of the nice folding ones, it is a basic as IV poles come. I asked them why in the world they were charging my insurance company this much for it and they looked into it and said they wouldn't charge my insurance company any more since they already paid over the price to buy the pole. How long would they have kept charging and how long would they have been paying if I didn't notice. VNA also didn't send Jillian's January bill to Medicaid so I got to talk to them about that. Oh insurance!
Last night I got most of the rest of the paperwork done for Medicaid. I am thankful that this time around I was smarter and ordered Lydia a birth certificate right after birth because Jillian's I had to scramble to get ordered and delivered in time for our home visit for Katie Beckett (incase you don't know Katie Beckett is Medicaid in Wisconsin for children who are medically complex, there are a lot of guidelines you have to meet). I just have one section left to finish on the paperwork.
We also ran to Target this morning before 10am meds. We ran out of Zyrtec so we needed to get more. The girls love Target! Jilli likes it when I write out a shopping list. She holds it the whole times and checks stuff off.
Tomorrow we have neuromuscular clinic at Children's. I'm not expecting it to be a big appointment.
Tuesday, January 31, 2017
Monday, January 30, 2017
Oh the poop
Some days are well.. poopy!
I just looked at Brent and said that I needed to change my shirt because it had poop on it... like everything else that was around Jillian when she pooped! I mean like everything! Floor, rug, all clothing on her, between her toes witch is interesting since she had socks on, on her oxygen and feeding tube, everywhere. It was bad. This is rare for this child since she normally has issues going but still no fun. I'm glad her intestines decided to work today.
This happened while I was working on Lydia's Katie Beckett paperwork. Lydia also didn't like that we were not paying attention to her while cleaning up the poop storm so she screamed the entire time. Oh somedays.
I ended up with a runny nose Friday night after Brent and Jilli did a dino dig thing and Sunday morning it went to my chest. Today I feel ok but I have next to no voice. Sometimes thats ok, sometimes we all need a reminder to shut up sometimes.
I started re-reading a book today that I read in high school. Its called Messy Spiritually, it talks about how none of us are prefect, we are all messed up and fail all the time but our job is to keep seeking God. Its a good reminder right now. In all that is going on it is easy to get caught in a holier then though thou attitude thinking we are better then other people. I have admitted to close friends and family that if my faith was not rooted in Jesus in all of the past year with the political seen and everything around it that I most likely would have left the church because the American Church as a whole has done and said some really crappy and unbiblical things during this all. Thankfully my faith isn't rooted in the American church and I have christian friends around me that let me admit my struggles and frustrations and we are able to dive into scripture together and have healthy conversations. My worry is for those who didn't have that. My heart breaks for them. This book is a good reminder of how messed up we all are and how much it doesn't help anyone to pretend like we are not. Its a good read and what my heart needed today. If we act like we don't sin then why would people join the church when they know they do? Instead we need to admit our sin and openly say we are engaging in a journey with God and we don't have it all together but He does. I spent some time today thinking about 1 John1:8-9 today and what the means, it was good verse to dig into given some of the things that have been said about what the christian faith is.
The girls had PT this morning. Jilli worked hard today and so did Lydia. Lydia protested more to working today then she has in the past but she was rubbing her eyes so much so I think she was tired.
I am also struggling with the lack of fact believing today. I feel like we are at the point where you could say the sun in yellow and someone would argue with you. It is this hard moral balance of when do you say something to someone and when don't you. Brent is more of the person to jump in and give facts and sources, and I would rather not argue with people (in fact I have commented on things more then once the past few days and then someone turn around and say something skewed and I comment the original poster personally to tell them I am out because I am not getting into a fight online but that I agree with the point they are trying to make) But at the same time I see the problem Brent brings up with sitting totally silent. If someone says the sun is purple, and then they convince other people the sun is purple now we have an even big issue because as an idea gains popularity there is a likelihood the idea will keep gaining steam no matter how crazy it is and no matter what the facts prove. Fights are useless, but sitting by feels wrong. So for now I just keep loving people as I wrestle.
On the lines of loving, thank you to those who have already talked to me about #roguesnowflake! You are awesome. From people talking to me about how they are going to get involved to two bags being brought to me at church on Sunday full of supplies. If you are someone who is also interested in going to RMH to help serve a meal in April please message me, I am working on the details of that right now but will need 10-15 people to help! If at any time you know a group that would like to go to RMH to help with a meal the guidelines are on their website. My heart was so touched last week when family in Indiana posted that they are working on getting a group together to serve at their local RMH!
Also a huge shout out to Stacy who sent Jilli a social story today with pictures about the testing she is having done in February. Caroline already had this test done so they are helping Jilli with it. I am so grateful for amazing friends who help us in this journey.
Well, now I need to go back to filling out Medicaid paperwork and work on cleaning the house. I am the type of person who can't handle a mess when someone is coming over (I do make exceptions at times) and especially when we are having a state home visit. Not that we have anything to hide, but I would rather people be comfortable in our home and it is not comfortable when you have to manage where to place your foot in a room of Duplos. Also its a good reason to need to deep clean but while having the home visit is plenty of motivation, that actual act of cleaning sometimes doesn't make it to the top of the list, especially when you have setbacks of poop volcanoes! Oh the juggle of life!
I just looked at Brent and said that I needed to change my shirt because it had poop on it... like everything else that was around Jillian when she pooped! I mean like everything! Floor, rug, all clothing on her, between her toes witch is interesting since she had socks on, on her oxygen and feeding tube, everywhere. It was bad. This is rare for this child since she normally has issues going but still no fun. I'm glad her intestines decided to work today.
This happened while I was working on Lydia's Katie Beckett paperwork. Lydia also didn't like that we were not paying attention to her while cleaning up the poop storm so she screamed the entire time. Oh somedays.
I ended up with a runny nose Friday night after Brent and Jilli did a dino dig thing and Sunday morning it went to my chest. Today I feel ok but I have next to no voice. Sometimes thats ok, sometimes we all need a reminder to shut up sometimes.
I started re-reading a book today that I read in high school. Its called Messy Spiritually, it talks about how none of us are prefect, we are all messed up and fail all the time but our job is to keep seeking God. Its a good reminder right now. In all that is going on it is easy to get caught in a holier then though thou attitude thinking we are better then other people. I have admitted to close friends and family that if my faith was not rooted in Jesus in all of the past year with the political seen and everything around it that I most likely would have left the church because the American Church as a whole has done and said some really crappy and unbiblical things during this all. Thankfully my faith isn't rooted in the American church and I have christian friends around me that let me admit my struggles and frustrations and we are able to dive into scripture together and have healthy conversations. My worry is for those who didn't have that. My heart breaks for them. This book is a good reminder of how messed up we all are and how much it doesn't help anyone to pretend like we are not. Its a good read and what my heart needed today. If we act like we don't sin then why would people join the church when they know they do? Instead we need to admit our sin and openly say we are engaging in a journey with God and we don't have it all together but He does. I spent some time today thinking about 1 John1:8-9 today and what the means, it was good verse to dig into given some of the things that have been said about what the christian faith is.
The girls had PT this morning. Jilli worked hard today and so did Lydia. Lydia protested more to working today then she has in the past but she was rubbing her eyes so much so I think she was tired.
I am also struggling with the lack of fact believing today. I feel like we are at the point where you could say the sun in yellow and someone would argue with you. It is this hard moral balance of when do you say something to someone and when don't you. Brent is more of the person to jump in and give facts and sources, and I would rather not argue with people (in fact I have commented on things more then once the past few days and then someone turn around and say something skewed and I comment the original poster personally to tell them I am out because I am not getting into a fight online but that I agree with the point they are trying to make) But at the same time I see the problem Brent brings up with sitting totally silent. If someone says the sun is purple, and then they convince other people the sun is purple now we have an even big issue because as an idea gains popularity there is a likelihood the idea will keep gaining steam no matter how crazy it is and no matter what the facts prove. Fights are useless, but sitting by feels wrong. So for now I just keep loving people as I wrestle.
On the lines of loving, thank you to those who have already talked to me about #roguesnowflake! You are awesome. From people talking to me about how they are going to get involved to two bags being brought to me at church on Sunday full of supplies. If you are someone who is also interested in going to RMH to help serve a meal in April please message me, I am working on the details of that right now but will need 10-15 people to help! If at any time you know a group that would like to go to RMH to help with a meal the guidelines are on their website. My heart was so touched last week when family in Indiana posted that they are working on getting a group together to serve at their local RMH!
Also a huge shout out to Stacy who sent Jilli a social story today with pictures about the testing she is having done in February. Caroline already had this test done so they are helping Jilli with it. I am so grateful for amazing friends who help us in this journey.
Well, now I need to go back to filling out Medicaid paperwork and work on cleaning the house. I am the type of person who can't handle a mess when someone is coming over (I do make exceptions at times) and especially when we are having a state home visit. Not that we have anything to hide, but I would rather people be comfortable in our home and it is not comfortable when you have to manage where to place your foot in a room of Duplos. Also its a good reason to need to deep clean but while having the home visit is plenty of motivation, that actual act of cleaning sometimes doesn't make it to the top of the list, especially when you have setbacks of poop volcanoes! Oh the juggle of life!
 |
| Jilli and her "Super Ladies" (thats what she calls them) She has a whole thing about the princesses and Bat girl working together to save the day and they use her computer and change in Pappa's house. She has "repurposed" many different toys to her whole seen, it is cute! |
Saturday, January 28, 2017
#roguesnowflake
I was up last night messaging with a friend about things going on in the world. What price are we willing to pay for one thing, while others are striped away. Conversations like this, while not happy have given me the glimmer of a snowflake, so once again this week I was up til 1am but this time it was coming up with this.
#roguesnowflake
At first I was offended when my generation was being called snowflakes and part of the reason was because we seek social justice. My generation was heavily taught that in school and in TV growing up and now we are adults and are not giving up those lessons. I get that there are other reasons why we have been called snowflakes, and while it still annoyed me that it is the generation that raised us that is calling us this, I am going to embrace it.
Yesterday was also Holocaust remembrance day and all week I have been struggling to shake the thoughts of what happened during the Holocaust to people with disabilities. All that plays in my head is "what if that happened to my kids."
So this is where the #roguesnowflake project is coming in.
I am going to be a #roguesnowflake. I am going to strive to do the right thing even when others don't. I am going to cause avalanches of change for the better by the way I live my life and the things I do.
What is a #roguesnowflake:
-Using LOVE as a communication tool. Love first, questions later.
-Loving people and building relationships with them in such a way that they see God's love. Investing in people continuously.
-Acts of service to help people.
-Seeking new ways to help others
-Asking why someone is doing something before judging
What is not a #roguesnowflake:
-Hateful speech or actions
-Yelling, screaming or calling names
-excluding others because of differences, Jesus ate with tax collectors and talked to a women at the well, if we want people to see God, then we need to love them.
Being a #roguesnowflake just takes doing everyday things to love people. Not some big show, not some big corporate project, love. Loving people.
I see people say all the time that gun violence is not going to be stopped with gun laws (thats a debate for a different day) but if that is the logic we are using then rape, murder, crime, parent less children and many other things are not going to be stopped with law (while I fully believe laws on these things are good and right for a functional society) what is going to stop them is love. People's actions come from something. If we love people the cycles of pain stop holding as tight of a grip on their life.
So I blogged about my first #roguesnowflake event yesterday and I would love for you to join me in that, and I will keep coming up with things to do to love others, but also if you are a reader of this blog I challenge you to be a #roguesnowflake too. Use the hashtag to talk about things that you are doing for others, cause I can't change the world myself, but I can be a snowflake that loves people, and that beauty of genuine caring will cause avalanches. Lets make a blizzard.... are you in? Share with others, because sometimes it gets hard and our minds and hearts get heavy, but seeing other #roguesnowflakes around you helps to push you forward.
#roguesnowflake
At first I was offended when my generation was being called snowflakes and part of the reason was because we seek social justice. My generation was heavily taught that in school and in TV growing up and now we are adults and are not giving up those lessons. I get that there are other reasons why we have been called snowflakes, and while it still annoyed me that it is the generation that raised us that is calling us this, I am going to embrace it.
Yesterday was also Holocaust remembrance day and all week I have been struggling to shake the thoughts of what happened during the Holocaust to people with disabilities. All that plays in my head is "what if that happened to my kids."
So this is where the #roguesnowflake project is coming in.
I am going to be a #roguesnowflake. I am going to strive to do the right thing even when others don't. I am going to cause avalanches of change for the better by the way I live my life and the things I do.
What is a #roguesnowflake:
-Using LOVE as a communication tool. Love first, questions later.
-Loving people and building relationships with them in such a way that they see God's love. Investing in people continuously.
-Acts of service to help people.
-Seeking new ways to help others
-Asking why someone is doing something before judging
What is not a #roguesnowflake:
-Hateful speech or actions
-Yelling, screaming or calling names
-excluding others because of differences, Jesus ate with tax collectors and talked to a women at the well, if we want people to see God, then we need to love them.
Being a #roguesnowflake just takes doing everyday things to love people. Not some big show, not some big corporate project, love. Loving people.
I see people say all the time that gun violence is not going to be stopped with gun laws (thats a debate for a different day) but if that is the logic we are using then rape, murder, crime, parent less children and many other things are not going to be stopped with law (while I fully believe laws on these things are good and right for a functional society) what is going to stop them is love. People's actions come from something. If we love people the cycles of pain stop holding as tight of a grip on their life.
So I blogged about my first #roguesnowflake event yesterday and I would love for you to join me in that, and I will keep coming up with things to do to love others, but also if you are a reader of this blog I challenge you to be a #roguesnowflake too. Use the hashtag to talk about things that you are doing for others, cause I can't change the world myself, but I can be a snowflake that loves people, and that beauty of genuine caring will cause avalanches. Lets make a blizzard.... are you in? Share with others, because sometimes it gets hard and our minds and hearts get heavy, but seeing other #roguesnowflakes around you helps to push you forward.
Friday, January 27, 2017
Step one
I blogged yesterday about being an avalanche for change. After I wrote that post (thank you for all the feedback!) I went to work on first steps I could do. Sure I have all these magical plans of big impact, but doing something starts with taking one step at a time. I have other things in the works but the first thing I am doing is to support Ronald McDonald House.
February 6th-10th is Feeding Tube Awareness week. We participate in that each year. This year in conjunction with that we are going to be helping Ronald McDonald House in Milwaukee since they support so many families with tubies. I reached out to RMH and asked them what is their greatest need right now. Below is a list of the things we will be collecting. We will be collecting donations until February 12th. Please remember that anything donated to RMH must be new in its original packaging.
RMH Needs:
#rougesnowflake
February 6th-10th is Feeding Tube Awareness week. We participate in that each year. This year in conjunction with that we are going to be helping Ronald McDonald House in Milwaukee since they support so many families with tubies. I reached out to RMH and asked them what is their greatest need right now. Below is a list of the things we will be collecting. We will be collecting donations until February 12th. Please remember that anything donated to RMH must be new in its original packaging.
RMH Needs:
- Tothbrushes
- Travel sized tooth paste
- Travel size shampoo
- Travel sized conitioner
- Travel size lotion
- Travel sized mouthwash
- Travel sized hand sanitizer
- Travel sized Kleenex
- Stuffed animals
- Decks of cards
- Journals
- Travel sized games
- Baby toys
#rougesnowflake
Thursday, January 26, 2017
THIS IS POLITICAL
The title is a warning, this is going to be political...
I have seen a lot of people complain lately about how celebrities shouldn't be saying anything about politics because it is not their place, and while I am not a celebrity person (honestly, pop culture is not my thing), I don't think its fair to say that because these people have a following that they loose their voice and opinion. Several of these people were also the same people praising Tim Tebow when he was talking about God, but when someone is supporting the other party then what you voted for the suddenly shouldn't have a voice, remember freedom of speech goes two ways.
I have a platform, and while small, I feel like it is my job to use it.
I was up until 1am this morning after watching the ABC interview with Trump last night. I am normally asleep a little after 10, I have two young kids and their feeding pumps go off at 2am and 6am. If you want someone to hang out with you late at night Brent is your guy.
So as I laid their last night my heart in turmoil I tried to focus my mind back to the Bible. The verses I meditated on were Isaiah 1:17, Romans 12:19, Matthew 5:42, James 4:7, James 4:17, and Psalm 34:14.
Our new president has been in office for a week now. Last Friday I was really hoping for good things (remember I am the one who will be greatly effected by the changes in ACA) and a week in my heart is heavy and sad. As I was crying to Brent last night I said I feel like I can make no impact in this situation, he reminded me that my job is to raise our children the best that I can so they also stand up to say when something is wrong. I taught multiple age groups and we did lessons about bullies in each one of them and every time I taught that if you see a bully doing something you don't like but you let it happen you are empowering the bullying.
So here is my stance:
-I will not be ok with media censorship. If you don't know I went to a special high school with an emphasis on communications, I have taken multiple media courses and in them I have learned about what happens in places of media censorship.
-I will not be ok with waterboarding or any other kinds of torture. It makes us no better then the countries we claim to be fighting against. Bush outlawed it in 2006... I was still in high school then. It is inhuman and the documents from the CIA says it does not work and often leads to wrong information.
-I will not be ok with "alternative fact" or misrepresentation of the truth. I don't need fact checking sites, I am able to find the information on my own. I will not accept something as truth just because someone says it, I don't care who that someone is.
-I will not be ok with people with pre existing conditions not being covered, healthcare maximums coming back. Last night Trump said again that they are going to come up with a new plan... wanna know what that tells me... they still don't have one, they are working to get rid of the ACA but they still have no plan to show us. I also read the Trump website again this week and it talks about block grants for medicaid... what happens when a state's money runs out in July? It also talks about scaling back medicaid.
-I will not be ok with not taking care of the earth. That is our job. It is very disrespectful to God to say "thanks for the earth now watch me destroy it." We need to be searching for ways to best take care of the earth
-I will not be ok to shutting our doors and boarders. Remember we are ALL IMMIGRANTS!
-I will not be ok with criminalizing women who have had abortions. I know Trump has since back peddled on this but it still worries me. Criminalizing these women just deepens the heartache and pain they are already going through. Instead we need to be loving people. We need to provide healthcare so they can have a safe pregnancy. We need churches to step up and take care of these children. We need to destigmaize disabilities because many of the babies who are aborted have disabilities and as a culture we still don't handle disables well (look at my post from Tuesday). Just making something illegal doesn't solve the problem. It doesn't solve sex slavery, rape, disability views, broken homes, the church not teaching grace, and brokenness. But I am really afraid that if it is made illegal then the church will think they are done and wash their hands, have a victory parade and leave these broken people behind telling them they are unwanted. I have seen the facebook posts that God couldn't love someone who had an abortion but then my mind thinks back to the story of Paul and how many people Paul killed "in the name of God" before he met Jesus and am reminded that facebook post is untrue.
-I will not be ok with someone being in charge of education in this country that doesn't understand IDEA and is not willing to take a stand that she will protect the rights of all students.
-I will not be ok with a wall. Look at history and see how well walls work but also think about the environmental impact. We only think of people but we forget about plans and animals that also are in that area.
-I will not be ok with discrimination based on ANYTHING! We are all God's children and right now there is a lot of acting like "I'm the favorite" and not caring who we hurt in the process.
-I will not be ok with the idolization of leaders. I don't care if it is the president or christian leaders. Doing something just because someone who uses the name God in their speech is not right. Our minister tells us to read the Bible for ourselves and make sure that what he is preaching is correct. I worry about the blind following of christian leaders without making sure that what they are saying is Biblical. There is a difference between a mentor and an idol. Read entire Bible passages to make sure that by just quoting one verse that it is not being taken out of context.
-I will not be ok with the dialog that everything here in America is broken. Yup we have our issues, but all I am seeing preached is how bad we have it. We have some great things going on. Our country is not a war zone. Our country is not burning to the ground. Our country sure is not Aleppo, but in the things I am hearing we are acting like it. Yes we need to keep striving to do better but we also need to wake up to how good we have it. America is not its own planet, we are not the kings of this world, and no where in the Bible does it call us God's chosen country; we need to play nice with everyone.
So I was up late last night and this morning my gut just feels ill because stress all goes right to my gut.
But I see people responding in one of two ways about this all:
1. Yelling, screaming and calling people names
2. Burying their heads in the sand.
I want to be somewhere between those two answers. Insulting people doesn't work and causes people to stop listening. But I refuse to be ok with many different things that are going on. I refuse to sit quite. I refuse to blindly follow.
So where does that leave me. At the moment, I'm not totally sure my next steps. I have been texting with two of my friends as we wrestle with this. I feel like I need to do something, but I don't know what. But as I work on that I am going to continue to love others and invest in them. I am going to keep the dialog open because even though taking politics literally makes me feel like vomiting, sitting quite is worse. I will continue to contact my representatives. I will support places like the Ann Frank Center and the rouge parks department as they stand up. I will continue to do things to support others. Ronald McDonald House in Milwaukee yesterday said they need snacks for families, I need to go to Target today anyhow so I can pick stuff up for them while I am out. Target also has tons of toys on cartwheel this week that would be prefect for the magic room. I will continue to write about my kids to spread disability awareness. I will keep looking for opportunities to love others. I will keep learning history so I can learn from its lessons. And while tons of people are calling my generation snowflakes I will become an avalanche for change. I will not be ok with something that is wrong because it is what we have always done. I will do more then just pray about it because I look at people in the Bible and God asks for actions (Jesus, Jonah, the disciples, and so many others). And my goal in this is not for my fame, but for His glory! We point people back to God's love with grace, mercy, kindness, hospitality and generosity... not walls, discrimination, greed and hate.
I have seen a lot of people complain lately about how celebrities shouldn't be saying anything about politics because it is not their place, and while I am not a celebrity person (honestly, pop culture is not my thing), I don't think its fair to say that because these people have a following that they loose their voice and opinion. Several of these people were also the same people praising Tim Tebow when he was talking about God, but when someone is supporting the other party then what you voted for the suddenly shouldn't have a voice, remember freedom of speech goes two ways.
I have a platform, and while small, I feel like it is my job to use it.
I was up until 1am this morning after watching the ABC interview with Trump last night. I am normally asleep a little after 10, I have two young kids and their feeding pumps go off at 2am and 6am. If you want someone to hang out with you late at night Brent is your guy.
So as I laid their last night my heart in turmoil I tried to focus my mind back to the Bible. The verses I meditated on were Isaiah 1:17, Romans 12:19, Matthew 5:42, James 4:7, James 4:17, and Psalm 34:14.
Our new president has been in office for a week now. Last Friday I was really hoping for good things (remember I am the one who will be greatly effected by the changes in ACA) and a week in my heart is heavy and sad. As I was crying to Brent last night I said I feel like I can make no impact in this situation, he reminded me that my job is to raise our children the best that I can so they also stand up to say when something is wrong. I taught multiple age groups and we did lessons about bullies in each one of them and every time I taught that if you see a bully doing something you don't like but you let it happen you are empowering the bullying.
So here is my stance:
-I will not be ok with media censorship. If you don't know I went to a special high school with an emphasis on communications, I have taken multiple media courses and in them I have learned about what happens in places of media censorship.
-I will not be ok with waterboarding or any other kinds of torture. It makes us no better then the countries we claim to be fighting against. Bush outlawed it in 2006... I was still in high school then. It is inhuman and the documents from the CIA says it does not work and often leads to wrong information.
-I will not be ok with "alternative fact" or misrepresentation of the truth. I don't need fact checking sites, I am able to find the information on my own. I will not accept something as truth just because someone says it, I don't care who that someone is.
-I will not be ok with people with pre existing conditions not being covered, healthcare maximums coming back. Last night Trump said again that they are going to come up with a new plan... wanna know what that tells me... they still don't have one, they are working to get rid of the ACA but they still have no plan to show us. I also read the Trump website again this week and it talks about block grants for medicaid... what happens when a state's money runs out in July? It also talks about scaling back medicaid.
-I will not be ok with not taking care of the earth. That is our job. It is very disrespectful to God to say "thanks for the earth now watch me destroy it." We need to be searching for ways to best take care of the earth
-I will not be ok to shutting our doors and boarders. Remember we are ALL IMMIGRANTS!
-I will not be ok with criminalizing women who have had abortions. I know Trump has since back peddled on this but it still worries me. Criminalizing these women just deepens the heartache and pain they are already going through. Instead we need to be loving people. We need to provide healthcare so they can have a safe pregnancy. We need churches to step up and take care of these children. We need to destigmaize disabilities because many of the babies who are aborted have disabilities and as a culture we still don't handle disables well (look at my post from Tuesday). Just making something illegal doesn't solve the problem. It doesn't solve sex slavery, rape, disability views, broken homes, the church not teaching grace, and brokenness. But I am really afraid that if it is made illegal then the church will think they are done and wash their hands, have a victory parade and leave these broken people behind telling them they are unwanted. I have seen the facebook posts that God couldn't love someone who had an abortion but then my mind thinks back to the story of Paul and how many people Paul killed "in the name of God" before he met Jesus and am reminded that facebook post is untrue.
-I will not be ok with someone being in charge of education in this country that doesn't understand IDEA and is not willing to take a stand that she will protect the rights of all students.
-I will not be ok with a wall. Look at history and see how well walls work but also think about the environmental impact. We only think of people but we forget about plans and animals that also are in that area.
-I will not be ok with discrimination based on ANYTHING! We are all God's children and right now there is a lot of acting like "I'm the favorite" and not caring who we hurt in the process.
-I will not be ok with the idolization of leaders. I don't care if it is the president or christian leaders. Doing something just because someone who uses the name God in their speech is not right. Our minister tells us to read the Bible for ourselves and make sure that what he is preaching is correct. I worry about the blind following of christian leaders without making sure that what they are saying is Biblical. There is a difference between a mentor and an idol. Read entire Bible passages to make sure that by just quoting one verse that it is not being taken out of context.
-I will not be ok with the dialog that everything here in America is broken. Yup we have our issues, but all I am seeing preached is how bad we have it. We have some great things going on. Our country is not a war zone. Our country is not burning to the ground. Our country sure is not Aleppo, but in the things I am hearing we are acting like it. Yes we need to keep striving to do better but we also need to wake up to how good we have it. America is not its own planet, we are not the kings of this world, and no where in the Bible does it call us God's chosen country; we need to play nice with everyone.
So I was up late last night and this morning my gut just feels ill because stress all goes right to my gut.
But I see people responding in one of two ways about this all:
1. Yelling, screaming and calling people names
2. Burying their heads in the sand.
I want to be somewhere between those two answers. Insulting people doesn't work and causes people to stop listening. But I refuse to be ok with many different things that are going on. I refuse to sit quite. I refuse to blindly follow.
So where does that leave me. At the moment, I'm not totally sure my next steps. I have been texting with two of my friends as we wrestle with this. I feel like I need to do something, but I don't know what. But as I work on that I am going to continue to love others and invest in them. I am going to keep the dialog open because even though taking politics literally makes me feel like vomiting, sitting quite is worse. I will continue to contact my representatives. I will support places like the Ann Frank Center and the rouge parks department as they stand up. I will continue to do things to support others. Ronald McDonald House in Milwaukee yesterday said they need snacks for families, I need to go to Target today anyhow so I can pick stuff up for them while I am out. Target also has tons of toys on cartwheel this week that would be prefect for the magic room. I will continue to write about my kids to spread disability awareness. I will keep looking for opportunities to love others. I will keep learning history so I can learn from its lessons. And while tons of people are calling my generation snowflakes I will become an avalanche for change. I will not be ok with something that is wrong because it is what we have always done. I will do more then just pray about it because I look at people in the Bible and God asks for actions (Jesus, Jonah, the disciples, and so many others). And my goal in this is not for my fame, but for His glory! We point people back to God's love with grace, mercy, kindness, hospitality and generosity... not walls, discrimination, greed and hate.
Wednesday, January 25, 2017
Applying for Medicaid
I have seen a lot of posts places lately about how many people abuse the government and how medicaid needs to be cut back because the people that are on it are freeloaders. So since I am in the midst of the process I will detail for you what it is like because I understand how easy it is to get behind that idea and get riled about it when it is a "those people" thing but sometimes we need to stop and look at things before grabbing pitchforks.
1. I called the woman from the local agency that does the medicaid enrolling and talked to her about Lydia's needs and why I thought she qualified. This was not a 30sec phone conversation, I had to answer multiple questions before she would agree to send me the paperwork.
2. The paperwork. Have you ever had to sit down and write all of the things your child struggles with, can't do or is delayed in? It is emotionally exhausting. I like to think of all the wonderful things about my children, but this paperwork is not for writing the amazing things about my kids, its writing all the struggles. There is form after form after form to fill out and you have to be as detailed as you possibly can be. This makes those new patient forms at doctors offices look tiny.
3. Collecting of records. I need to have therapy progress notes, information about where each of the different doctors and therapists Lydia sees, and any records that I think would help them in understanding Lydia's needs. For many of these things it is a process to track stuff down.
4. Home visit. Next week a woman from the state will come to our house. I will need to rehash all of the things Lydia can't do. It is like a job interview but for healthcare for my child with just as much stress as a job interview, just this takes place in our house so the house needs to be clean as well.
5. We turn all of the paperwork in and then it goes to the state where they request all of Lydia's medical records. The review of her records and all of the paperwork takes about 3 months while you sit there waiting.
6. You get a letter in the mail telling you if you child has been deemed disabled under the state's standards. When you get that letter either way it goes is like a punch in the gut, either they say your child is not and therefor you do not qualify, or your child is and it is like a punch to the heart getting a letter saying the state has deemed your child disabled. I know it doesn't change anything about my child but it is like the first time I heard the doctors label each of my children as "failure to thrive" it is hard.
7. Then you wait for a letter to find out if you are being enrolled in medicaid or not, when we went through it with Jilli they told us that there always is a small chance that your child will be deemed disabled but the state says no to medicaid.
8. Once you get the letter saying you have been enrolled in medicaid, it is not a one and done thing, this process happens EVERY YEAR to make sure your child still qualifies. And just because your child qualifies doesn't mean they pay for everything no questions asked. For therapies we have to get a prior approval every 6mo where they like to ask lots of questions, and currently for Jilli they will only approve 6 visits in a 6mo time-frame, which is less then 1/4 of the therapy visits she gets during a 6mo time frame. There are also many things not covered by either insurance, the belts and pads the girls wear to help to prevent the tubes from being pulled out, Jillian's oxygen stickers, vitamins and probiotics (Jilli's one vitamin is over $60 a month, her probiotic is another $30, plus the 3 other vitamins she is on), Jillian's special bed, and tons of other things we pay out of pocket for.
For us medicaid is a secondary insurance. We pay 2,090.40 a year in premiums, then $4,200 in deductible and $10,000 in out of pocket max for insurance through Brent's work. Remember we are a one income household with student loans, mortgage and car loan plus all of the other bills. Without medicaid we will go bankrupt. It is not even the end of January and we have already blown through our $4,200 deductible.
We also do what we can to save our insurance companies' money. We combine procedures when we can, we only do tests that we have to, we get our tubes changed out every 3 months so they don't have to pay for an emergency admission if it breaks outside of IR hours, we pay for things that help to keep the tube secure.
There are always going to be people who scam things, always and I agree there needs to be accountability, but are you will to cut funding to the program and risk people dying? I hope this post helps you to see how many checks and balances are already in place in our state (I can't speak for other states).
1. I called the woman from the local agency that does the medicaid enrolling and talked to her about Lydia's needs and why I thought she qualified. This was not a 30sec phone conversation, I had to answer multiple questions before she would agree to send me the paperwork.
2. The paperwork. Have you ever had to sit down and write all of the things your child struggles with, can't do or is delayed in? It is emotionally exhausting. I like to think of all the wonderful things about my children, but this paperwork is not for writing the amazing things about my kids, its writing all the struggles. There is form after form after form to fill out and you have to be as detailed as you possibly can be. This makes those new patient forms at doctors offices look tiny.
3. Collecting of records. I need to have therapy progress notes, information about where each of the different doctors and therapists Lydia sees, and any records that I think would help them in understanding Lydia's needs. For many of these things it is a process to track stuff down.
4. Home visit. Next week a woman from the state will come to our house. I will need to rehash all of the things Lydia can't do. It is like a job interview but for healthcare for my child with just as much stress as a job interview, just this takes place in our house so the house needs to be clean as well.
5. We turn all of the paperwork in and then it goes to the state where they request all of Lydia's medical records. The review of her records and all of the paperwork takes about 3 months while you sit there waiting.
6. You get a letter in the mail telling you if you child has been deemed disabled under the state's standards. When you get that letter either way it goes is like a punch in the gut, either they say your child is not and therefor you do not qualify, or your child is and it is like a punch to the heart getting a letter saying the state has deemed your child disabled. I know it doesn't change anything about my child but it is like the first time I heard the doctors label each of my children as "failure to thrive" it is hard.
7. Then you wait for a letter to find out if you are being enrolled in medicaid or not, when we went through it with Jilli they told us that there always is a small chance that your child will be deemed disabled but the state says no to medicaid.
8. Once you get the letter saying you have been enrolled in medicaid, it is not a one and done thing, this process happens EVERY YEAR to make sure your child still qualifies. And just because your child qualifies doesn't mean they pay for everything no questions asked. For therapies we have to get a prior approval every 6mo where they like to ask lots of questions, and currently for Jilli they will only approve 6 visits in a 6mo time-frame, which is less then 1/4 of the therapy visits she gets during a 6mo time frame. There are also many things not covered by either insurance, the belts and pads the girls wear to help to prevent the tubes from being pulled out, Jillian's oxygen stickers, vitamins and probiotics (Jilli's one vitamin is over $60 a month, her probiotic is another $30, plus the 3 other vitamins she is on), Jillian's special bed, and tons of other things we pay out of pocket for.
For us medicaid is a secondary insurance. We pay 2,090.40 a year in premiums, then $4,200 in deductible and $10,000 in out of pocket max for insurance through Brent's work. Remember we are a one income household with student loans, mortgage and car loan plus all of the other bills. Without medicaid we will go bankrupt. It is not even the end of January and we have already blown through our $4,200 deductible.
We also do what we can to save our insurance companies' money. We combine procedures when we can, we only do tests that we have to, we get our tubes changed out every 3 months so they don't have to pay for an emergency admission if it breaks outside of IR hours, we pay for things that help to keep the tube secure.
There are always going to be people who scam things, always and I agree there needs to be accountability, but are you will to cut funding to the program and risk people dying? I hope this post helps you to see how many checks and balances are already in place in our state (I can't speak for other states).
 |
| The paperwork packet. When I posted this picture on facebook every person who has had interactions with these forms expressed how much they suck or gave me a pep talk about how I could tackle this challenge, because the people who have done them understand how hard the process is |
Tuesday, January 24, 2017
Loving families of kids with medical needs
As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.- John 9:1-3
I have clung to that passage so many times in the last 4 years. There has been more then one time since having Jillian that someone either insinuated or outright asked what I did to cause the girls to be sick. It is heart crushing to sit at a party and here the next table over talking about you and your kid and coming up with the laundry list of things they thought you did wrong to cause her medical needs. They decided on over antibiotic use which in all honestly is rather funny because I don't take any while pregnant with Jilli and am one of those people who will push out using an antibiotic as long as possible, I had C-diff in college, and once you have C-diff once you work hard not to get it again.
I just kept reminding myself of the Biblical truth in the end of that passage that the things going on in our life is so the works of God might be displayed in my kids. My prayer for the girls since before they were born is that God uses them for His glory and I see Him doing that all the time.
Being in the special needs world I have made it a priority to be involved and love on others. This blog is one way, facebook support groups and making time for people in this community. I want to invest in others and use our life events to help others. One of the parts of doing life with people is being invested and celebrating with them when they are happy and morning with them in the hard times.
But there is one thing I just don't understand.... why is the Church not teaching John 9:1-3? Did we forget about it? I mean I see so much "feel good Bible" online, and this verse fits in with feel good Bible memes, so why is this getting lost?
There are tons of Bible passages that we leave out of normal life, I mean most people can quote John 3:16 but ask someone to quote you a verse from Leviticus and they will likely have a harder time. Its a big book, doesn't mean we shouldn't be in it and reading it, but there are always going to be more popular sections.
So why does it matter if we are highlighting John9:1-3... because I have heard the story over and over and over from so many special needs families that the opposite is be preached all over the world.
Imagine you are a family with a little boy who loves to ride on trains, so you get tickets to a church's Christmas Train. You are all excited to go and get on the train and then on this train ride they start showing pictures of people that are sick and malnourished and then say that if these people had faith this wouldn't happen to them. WHAT!? Now imagine you are sitting on that train with a little boy who is sick, who has a feeding tube and needing organ transplants.
Imagine if you are going to church someplace and you get the results back that your child needs open heart surgery. You go to your church looking for love and support. They say they will pray for you but do nothing else. They pray for a miracle for your child and insist that you get another echo done right before surgery to see if their prayers worked, but then when the child still needs surgery the church abandons the family because what the church prayed for didn't happen and they only wanted to be involved in this families life if they could use it as "inspiration porn"
Imagine you are a family who has a baby that is born with a rare genetic disorder and the baby dies very shortly after birth, now imagine you are at your baby's funeral and the preacher says that if the family just had the faith of a mustard seed their baby would not have died.
Imagine you have cancer and it is nearing the end and the members of your church come to visit you and tell you that they thought you were such a good christian but things like this don't happen to good Christians and they question if you have faith. Imagine you are left laying there crying because you thought you were a good Christian but now have been told if you have cancer you must not be.
Imagine those stories... now realize they are all true stories. Each one of them. Shared with me from different families, from different areas who didn't attend the same church or even same denomination.
How would those situations make you feel?
All of those situations pushed the families away from the church. In times when those families needed the church the most they were pushed away and their faith mocked. Being pushed away from your church because you have a sick kid.... sounds like the opposite of what Jesus says.
But it also makes it so that you would feel as a Christian that you don't need to do anything to help the widows, orphans or sick because if those people just prayed hard enough and had faith then they would no longer be hungry, cold, lonely, or hurting. We are rather quick at blaming someone for their problems instead of helping which is not what the Bible calls us to do. We are good at using the judge verse, but we forget the the judge verse is to be used with other Christians not the rest of the world and that God is not a magical fairy in the sky just granting our wishes, He has the whole world in his hands, every person, and it is our job to pray for His will and sometimes we go through hard stuff and going through hard stuff doesn't mean that God doesn't love someone. God has taught me so many things in the midst of hard stuff. But sometimes the church portrays that once you accept Jesus that all the hard goes away but that is not Biblical, instead now we have God to walk with us during the hard and help to ease the burden and one of the places that should be helping to ease the burden is the church.
So my goal now is to share the John 9 story with as many special needs families as I can because I do go to a church that does preach John 9 and I have seen how it works when people support others with the view of this passage. I also watched the relief on someone's face recently as they were telling me their story and I shared the the John 9 passage, they had just heard from churches that it was their fault for their child's sickness but this verse was a change from the guilt and a freeing of chains. Special needs parents blame themselves for so many things already and are always wondering what more they can do for their child when they are already giving over 100%, the last thing they need is the church saying it is their fault and they don't have enough faith. I get the want to pray for healing but sometimes in that then we miss the amazing people these individuals are. We discount them because they are sick. My kids are still amazing people despite their genetic disorder and because of their disorder they have learned things many kids at their age have not. Jilli is so compassionate! She understands doing things you don't want to do. Her sickness has shaped who she is today. I want to help love people and lighten their load, I'm not always good at it but I try to focus my eyes back there.
We need to remember ALL PEOPLE are children of God. He loves each one and longs for them to be close to Him, so lets love people more so that they see the Father working in us.So if you know a special needs family please share the John 9 passage with them and let them know that you are there to support them, love them and do not judge them.
3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.- John 9:1-3
I have clung to that passage so many times in the last 4 years. There has been more then one time since having Jillian that someone either insinuated or outright asked what I did to cause the girls to be sick. It is heart crushing to sit at a party and here the next table over talking about you and your kid and coming up with the laundry list of things they thought you did wrong to cause her medical needs. They decided on over antibiotic use which in all honestly is rather funny because I don't take any while pregnant with Jilli and am one of those people who will push out using an antibiotic as long as possible, I had C-diff in college, and once you have C-diff once you work hard not to get it again.
I just kept reminding myself of the Biblical truth in the end of that passage that the things going on in our life is so the works of God might be displayed in my kids. My prayer for the girls since before they were born is that God uses them for His glory and I see Him doing that all the time.
Being in the special needs world I have made it a priority to be involved and love on others. This blog is one way, facebook support groups and making time for people in this community. I want to invest in others and use our life events to help others. One of the parts of doing life with people is being invested and celebrating with them when they are happy and morning with them in the hard times.
But there is one thing I just don't understand.... why is the Church not teaching John 9:1-3? Did we forget about it? I mean I see so much "feel good Bible" online, and this verse fits in with feel good Bible memes, so why is this getting lost?
There are tons of Bible passages that we leave out of normal life, I mean most people can quote John 3:16 but ask someone to quote you a verse from Leviticus and they will likely have a harder time. Its a big book, doesn't mean we shouldn't be in it and reading it, but there are always going to be more popular sections.
So why does it matter if we are highlighting John9:1-3... because I have heard the story over and over and over from so many special needs families that the opposite is be preached all over the world.
Imagine you are a family with a little boy who loves to ride on trains, so you get tickets to a church's Christmas Train. You are all excited to go and get on the train and then on this train ride they start showing pictures of people that are sick and malnourished and then say that if these people had faith this wouldn't happen to them. WHAT!? Now imagine you are sitting on that train with a little boy who is sick, who has a feeding tube and needing organ transplants.
Imagine if you are going to church someplace and you get the results back that your child needs open heart surgery. You go to your church looking for love and support. They say they will pray for you but do nothing else. They pray for a miracle for your child and insist that you get another echo done right before surgery to see if their prayers worked, but then when the child still needs surgery the church abandons the family because what the church prayed for didn't happen and they only wanted to be involved in this families life if they could use it as "inspiration porn"
Imagine you are a family who has a baby that is born with a rare genetic disorder and the baby dies very shortly after birth, now imagine you are at your baby's funeral and the preacher says that if the family just had the faith of a mustard seed their baby would not have died.
Imagine you have cancer and it is nearing the end and the members of your church come to visit you and tell you that they thought you were such a good christian but things like this don't happen to good Christians and they question if you have faith. Imagine you are left laying there crying because you thought you were a good Christian but now have been told if you have cancer you must not be.
Imagine those stories... now realize they are all true stories. Each one of them. Shared with me from different families, from different areas who didn't attend the same church or even same denomination.
How would those situations make you feel?
All of those situations pushed the families away from the church. In times when those families needed the church the most they were pushed away and their faith mocked. Being pushed away from your church because you have a sick kid.... sounds like the opposite of what Jesus says.
But it also makes it so that you would feel as a Christian that you don't need to do anything to help the widows, orphans or sick because if those people just prayed hard enough and had faith then they would no longer be hungry, cold, lonely, or hurting. We are rather quick at blaming someone for their problems instead of helping which is not what the Bible calls us to do. We are good at using the judge verse, but we forget the the judge verse is to be used with other Christians not the rest of the world and that God is not a magical fairy in the sky just granting our wishes, He has the whole world in his hands, every person, and it is our job to pray for His will and sometimes we go through hard stuff and going through hard stuff doesn't mean that God doesn't love someone. God has taught me so many things in the midst of hard stuff. But sometimes the church portrays that once you accept Jesus that all the hard goes away but that is not Biblical, instead now we have God to walk with us during the hard and help to ease the burden and one of the places that should be helping to ease the burden is the church.
So my goal now is to share the John 9 story with as many special needs families as I can because I do go to a church that does preach John 9 and I have seen how it works when people support others with the view of this passage. I also watched the relief on someone's face recently as they were telling me their story and I shared the the John 9 passage, they had just heard from churches that it was their fault for their child's sickness but this verse was a change from the guilt and a freeing of chains. Special needs parents blame themselves for so many things already and are always wondering what more they can do for their child when they are already giving over 100%, the last thing they need is the church saying it is their fault and they don't have enough faith. I get the want to pray for healing but sometimes in that then we miss the amazing people these individuals are. We discount them because they are sick. My kids are still amazing people despite their genetic disorder and because of their disorder they have learned things many kids at their age have not. Jilli is so compassionate! She understands doing things you don't want to do. Her sickness has shaped who she is today. I want to help love people and lighten their load, I'm not always good at it but I try to focus my eyes back there.
We need to remember ALL PEOPLE are children of God. He loves each one and longs for them to be close to Him, so lets love people more so that they see the Father working in us.So if you know a special needs family please share the John 9 passage with them and let them know that you are there to support them, love them and do not judge them.
Friday, January 20, 2017
Jilli sayings
Jilli has been working hard to try to cheer me up today (my post from this morning explains why) but man this kid says the darnedest things!
Jilli: mom, do you have any friends
Me: Yes
Jilli: Who
Me: Lists off several of my friends who all happen to be female
Jilli: (in a disgusted tone) your friends are all.... MOMS!!!
imagine that Jilli, I have mom friends!
Jilli starts poking her diaper. I ask her if she is ok. She says "yea, I just have a grown up sized poop in here" So I search for the wipes which for some reason are by the toaster?! Lay her down to change her diaper...just some pee. She was so disappointed there was not a grown up sized poop in her diaper.
We were getting ready to leave to go to Target. I look over at Jillian and she has the oxygen from her teddy around her head. I tell her to take that off of her head because I don't want her to strangle herself... She said but mom, its a light, I need it to see. Love your imagination baby girl but lets not put ourselves in danger please.
We get into Target and I head to Starbucks, Jilli grabs a coffee holder for the cart. She says carts having coffee holders is very important to her. I ask her why, she says because mommy really need real coffee, fake stuff just wont do. I buy my coffee and the barista gives Jilli the receipt. They know us at our Target Starbucks and know that I drink the coffee and Jilli gets the receipt. Advantage of having a tube fed child, it saves me money at Starbucks, all she wants is the receipt!
We then walked through the toy clearance and Jilli picked out toys to donate to Ronald McDonald House. She didn't ask for any for herself, she loves to donate toys to RMH. She was mad at me the last time we stayed there because we didn't bring any toy dinos with us to donate. Her giving spirit makes me smile. We did pick up a new Paw Patrol movie for her, but if I admit it was half for me too because we only owned one and it only had one Paw Patrol episode on it and my sanity was running thin watching that same episode.
Right now she is sitting in her high chair waiting for me to bring her play dough (ps there were some really cool new learning playdough sets today at Target) and she is singing Joy to the World at the top of her lungs. Jilli thinks any time she plays her guitar that singing must be screamo!? And she will stop singing every once and a while and say "family you need to exercise" and then go back to singing. Thanks Sid the Science kid for telling my kid that we all need to exercise...
I am thankful for her care about me and wanting me to be ok. She keeps telling me she needs to see my face up (what she calls a smile). She doesn't understand all that is going on right now but she gets that mommy is sad and she wants to help. Its hard though because she is trying to understand it all and so every once and a while today she will look at me and say "no one dies at our house, right mom, we stay here on earth forever" Its hard to explain to a four year old and it hits rather close to home in more ways then one (Luke is the same age as my brother, we all grew up together, and read the section about my fears in the This Little Miggy Spotlight today). So today I am thankful for Jillian's kindness and wanting to making me smile and Lydia's sweet cuddles.
Tonight as I stood in the girls rooms folding laundry with my trusty Jon Forman station playing the Phil Wickham song Beautiful came on and as he sang "when death is just a memory and tears are no more" the floodgate of tears flowed but was a good reminder of when we enter into eternity with God. A reminder of this world and God's forever plans.
Jilli: mom, do you have any friends
Me: Yes
Jilli: Who
Me: Lists off several of my friends who all happen to be female
Jilli: (in a disgusted tone) your friends are all.... MOMS!!!
imagine that Jilli, I have mom friends!
Jilli starts poking her diaper. I ask her if she is ok. She says "yea, I just have a grown up sized poop in here" So I search for the wipes which for some reason are by the toaster?! Lay her down to change her diaper...just some pee. She was so disappointed there was not a grown up sized poop in her diaper.
We were getting ready to leave to go to Target. I look over at Jillian and she has the oxygen from her teddy around her head. I tell her to take that off of her head because I don't want her to strangle herself... She said but mom, its a light, I need it to see. Love your imagination baby girl but lets not put ourselves in danger please.
We get into Target and I head to Starbucks, Jilli grabs a coffee holder for the cart. She says carts having coffee holders is very important to her. I ask her why, she says because mommy really need real coffee, fake stuff just wont do. I buy my coffee and the barista gives Jilli the receipt. They know us at our Target Starbucks and know that I drink the coffee and Jilli gets the receipt. Advantage of having a tube fed child, it saves me money at Starbucks, all she wants is the receipt!
We then walked through the toy clearance and Jilli picked out toys to donate to Ronald McDonald House. She didn't ask for any for herself, she loves to donate toys to RMH. She was mad at me the last time we stayed there because we didn't bring any toy dinos with us to donate. Her giving spirit makes me smile. We did pick up a new Paw Patrol movie for her, but if I admit it was half for me too because we only owned one and it only had one Paw Patrol episode on it and my sanity was running thin watching that same episode.
Right now she is sitting in her high chair waiting for me to bring her play dough (ps there were some really cool new learning playdough sets today at Target) and she is singing Joy to the World at the top of her lungs. Jilli thinks any time she plays her guitar that singing must be screamo!? And she will stop singing every once and a while and say "family you need to exercise" and then go back to singing. Thanks Sid the Science kid for telling my kid that we all need to exercise...
I am thankful for her care about me and wanting me to be ok. She keeps telling me she needs to see my face up (what she calls a smile). She doesn't understand all that is going on right now but she gets that mommy is sad and she wants to help. Its hard though because she is trying to understand it all and so every once and a while today she will look at me and say "no one dies at our house, right mom, we stay here on earth forever" Its hard to explain to a four year old and it hits rather close to home in more ways then one (Luke is the same age as my brother, we all grew up together, and read the section about my fears in the This Little Miggy Spotlight today). So today I am thankful for Jillian's kindness and wanting to making me smile and Lydia's sweet cuddles.
Tonight as I stood in the girls rooms folding laundry with my trusty Jon Forman station playing the Phil Wickham song Beautiful came on and as he sang "when death is just a memory and tears are no more" the floodgate of tears flowed but was a good reminder of when we enter into eternity with God. A reminder of this world and God's forever plans.
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| My sweet girl |
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| Tinker Bell Jilli |
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| It looks like it might be time to pack up the mamaroo |
This Little Miggy
About a week ago my friend Stacy sent me an email that said that our story would be a great one to share on the blog "This Little Miggy." This Little Miggy is a blog written by a mom with a daughter with limb differences. She has taken her platform to share stories of other special needs families to raise awareness. She interviews families and shares their story on her site. This week I had the opportunity to be interviewed by Miggy and today our story was shared.
CLICK HERE TO GO TO THIS LITTLE MIGGY
On an even more personal note, please keep my entire family in your thoughts and prayers. I am sure somewhere on here though the years I have talked about my twin cousins with CF. Last night one of the twins, Luke, passed away. We are all heartbroken. We all grew up together and while we knew what CF was, it is still so hard to see him go! Please pray for his parents, brothers and sister and all of the extended family as we all grieve.
Here are some pictures from my wedding of my cousins
CLICK HERE TO GO TO THIS LITTLE MIGGY
On an even more personal note, please keep my entire family in your thoughts and prayers. I am sure somewhere on here though the years I have talked about my twin cousins with CF. Last night one of the twins, Luke, passed away. We are all heartbroken. We all grew up together and while we knew what CF was, it is still so hard to see him go! Please pray for his parents, brothers and sister and all of the extended family as we all grieve.
Here are some pictures from my wedding of my cousins
Sunday, January 15, 2017
Hard stuff
I was talking with someone online today and having the conversation about how everyone has hard things in their life.
Sometimes I feel torn about some of the special needs post out there because they make is sound like special needs parenting is the hardest thing in the world... its hard, I'm not going to downplay that, I try to be honest about the challenges on this blog, but at the same time its not the hardest thing in the world...
WE ALL HAVE HARD STUFF GOING ON IN OUR LIVES!
Each and every one of us. Our "hard" might look different, but looking back, each season of my life had hard things.
-Struggling with school so much when I was little
-being in high school and wanting to be and adult
-Being in college and being frustrated because I wanted to make my impact with kids and sometimes the assignments drove me crazy
-Being newly married and figuring that out while still being in school
-Trying to get pregnant with Jillian, I wanted to be a mom so bad
-Being pregnant, I am SO sick while pregnant
In different seasons there are different hard things. Yes, sometimes I a guilty of seeing something someone is struggling and thinking to myself "If only that was my biggest stress" but then I try to refocus, because something being hard for someone feels really big and overwhelming and it is not loving to dismiss their feelings. Yes sometimes we all need a push to see past our day to day lives, I think often in our country we forget about all the other things going on in the world, and even things going on outside our front door, but that doesn't diminished what is going on in someone's life.
So my goal is to love people in their hard. Love them where they are at. I'm not always perfect and I fully admit that sometimes I get very caught up in my own life and forget about others. But something I have learned is that when you come along side others and love them your hard feels less overwhelming and hopefully to them their hard feels less overwhelming too because they have someone along side of them to help carry the load.
Sometimes I feel torn about some of the special needs post out there because they make is sound like special needs parenting is the hardest thing in the world... its hard, I'm not going to downplay that, I try to be honest about the challenges on this blog, but at the same time its not the hardest thing in the world...
WE ALL HAVE HARD STUFF GOING ON IN OUR LIVES!
Each and every one of us. Our "hard" might look different, but looking back, each season of my life had hard things.
-Struggling with school so much when I was little
-being in high school and wanting to be and adult
-Being in college and being frustrated because I wanted to make my impact with kids and sometimes the assignments drove me crazy
-Being newly married and figuring that out while still being in school
-Trying to get pregnant with Jillian, I wanted to be a mom so bad
-Being pregnant, I am SO sick while pregnant
In different seasons there are different hard things. Yes, sometimes I a guilty of seeing something someone is struggling and thinking to myself "If only that was my biggest stress" but then I try to refocus, because something being hard for someone feels really big and overwhelming and it is not loving to dismiss their feelings. Yes sometimes we all need a push to see past our day to day lives, I think often in our country we forget about all the other things going on in the world, and even things going on outside our front door, but that doesn't diminished what is going on in someone's life.
So my goal is to love people in their hard. Love them where they are at. I'm not always perfect and I fully admit that sometimes I get very caught up in my own life and forget about others. But something I have learned is that when you come along side others and love them your hard feels less overwhelming and hopefully to them their hard feels less overwhelming too because they have someone along side of them to help carry the load.
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| Some friends of us loved my girls and sent them vinyl name stickers for their feeding pumps. Jillian loves hers we like that it is easier to tell the two pumps apart |
Saturday, January 14, 2017
Roanld McDoanld House
I am giving a speech tomorrow to a church group who is volunteering at RMH soon. Many people have asked me about what all RMH does and what roll it serves to help families. Here is the gist of the speech I am giving tomorrow and hopefully it helps to answer those questions.
"To our family Ronald McDonald House is more than a building,
their slogan is that RMH is the house that love built and they show that every
day.
We have two daughters, Jillian who is 4 and Lydia who is
6mo. They both are considered to be undiagnosed. Their digestive system does
not work properly so they are fed with a GJ tube. Jillian is on oxygen anytime
she is awake and she also wears leg braces. We have had over 100 doctors
appointments at Children’s Hospital of Wisconsin in the past 4 years. Between
the two girls there have been 16 hospital admissions and 9 trips into the operating
room. We are at Children’s a lot! We live about an hour away which makes it
difficult to commute back and forth when we have to be there multiple days in a
row. That is where RMH comes in.
RMH is a place to lay our heads at the end of a long day.
When we check into RMH the girls are given tokens to go to the Magic Room. In
the Magic Room, they get to pick out a toy and a book. This is a very exciting
thing for Jillian! She gets so excited on the elevator ride down to the Magic
Room. Jilli loves Peppa Pig and one time on a trip to the Magic Room they had a
Peppa Pig toy. Her face lit up and she plays with the toy she gets in the Magic
Room while we are at appointments or in the hospital. A trip to the magic room
is something for her to look forward to when she knows some scary medical
things are coming up.
We then go up to our room where there is a bag on the bed
with toiletries in case we forgot anything which helps with my piece of mind to
know that if we forgot a toothbrush or soap that it is there in case we need
it. There is also always a stuffed animal waiting on our bed for us which
always makes Jillian smile. Last week when we got to our room there was a teddy
bear on the bed and this bear and Jilli have been inseparable this week. She
always sleeps with the stuffed animal that is on the bed.
There are three sections of rooms at the RMH in Milwaukee.
There is the original section where all of the rooms are around the great room.
These rooms have two twin beds in them. There is the new section and in those
rooms there is one queen sized bed and a love seat. The third section is long
term rooms. These rooms are larger and have a small living room area in
addition to the bed room and bathroom. Long term rooms are for families that
have been at RMH for longer then 60 days. We have some friends who have been at
RMH from out of state since July. 70 families are able to stay at RMH in
Milwaukee at one time.
After we get settled into our room we typically head to the
playroom. Jillian loves to play dress up in the playroom. Behind the playroom
is the green room which has the coffee maker and has plants growing inside of
it. Behind the green room is Jillian’s other favorite room, the art room. 4
days a week there is art therapy. The hospital and RMH share two art therapists
who come in and help families process what they are going through with art. One
night a week there is music therapy where kids get to play different instruments
and sing songs. There is a lot of healing in expression therapies because it
helps families to take their minds off of the things that are going on and it
lets kids just be kids for a bit.
In the middle of the house there is a large warming
fireplace. Frequently around the fire place there are puzzles, books, small
toys and coloring things for families to use. Jillian loves it when there are
sticker books around the fire place as they entertain her while we are at
appointments. Also in the great room from time to time there are therapy dogs.
Jillian is allergic to dogs so we stay in different parts of the house when
they are there but I know many children get great joy out of seeing the therapy
dogs.
The house has multiple different kitchen that families can
use. Families are not allowed to have food inside of their rooms so everyone is
assigned fridge and pantry space. There are also general use fridges and
pantries stocked with basic things like milk, jelly, bread ect in case a family
ends up at RMH and is not able to run to the grocery store right away to get
things. At night, there are family dinners and on the weekend there is brunch.
These meals are only provided on days when outside groups come in to make the
meals. These meals are a huge blessing to families. Not having to worry about
cooking a meal takes stress away. It also gets very expensive when you are
living in the hospital because hospital food is expensive especially when you
are having to buy hospital food three times a day. This is a huge cost savings
for us when we are in the hospital. It also gives families time to relax
together. Frequently during dinner you will hear families asking other families
how their day went, how the testing was and how their kid is doing. This is a
time that lets parents vent and also share ideas which can help a child’s
treatment. These meals might seem small but in the reality they are large.
Ronald McDonald House is connected directly to Children’s
Hospital of Wisconsin by a bridge which makes it so convenient. They also have
a van that will transport people back and forth to the hospital which is
helpful on cold days.
Outside of the house is a beautiful garden that is taken
care of by a group of master gardeners. There is also a swing set out there for
kids to play on. It is a very peaceful
and calm area.
At the house there is a wide range of kids there. All
children whose families are staying there must be receiving treatment at a
local children’s hospital. They must also not live close to the hospital their
child is receiving care at. The statistics of who stayed at RMH in 2015 are
that 16% SE Wisconsin, 4% SW Wisconsin, 45% NE WI, 7% Central WI, 3% NE WI, 25%
5outside of WI. The families that are staying at the house are not there for “little”
things. These are kids with complex medical needs. Seeing medical equipment
around RMH is common. From feeding tubes, oxygen, wheelchairs, port lines, to
different orthidic supports. I know it can be scary to see some of these things
but in reality, they are a blessing, they are keeping that child alive. To many
kids their medical equipment is just what it is, Jillian is so non cholent
about her medical equipment, if you ask her why she has oxygen she will matter
of factly tell you it helps her breathe. Many of these kids see these things as their
chance at life and for that they celebrate.
It takes a lot of people to run a house that serves so many
people every day of the year. There are
a few full time staff members that work at RMH but it also takes a lot of volunteers
to make it run. From cleaning around the house, to making meals, and welcoming
families when they arrive, there are always volunteers busy around the house.
Ronald McDonald House’s goal is to keep families close to
their child receiving medical care and they do that but also so much more. I am
so grateful for everything they have done for our family and continue to do for
families like ours. RMH helps to carry the weight of caring for a medically
complex child."
How you can help RMH:
- Donate toys for the magic room. These are toys that's value are typically above $15 (new in package)
- Donate things for in front of the fire place (puzzles, small toys for babies, coloring books, sticker books, small art kits, small card and board games)
- Food for the general use pantry
- Toiletry items
- Serve a meal, there is a calendar on their website of open dates
- Collect pop tabs (a significant portion of their operating funds come from pop tabs)
- volunteer time to help clean around the house
- Help with the lunch 2 go program that makes sandwiches for families to take with them to the hospital
- New stuffed animals
- On their website is a wish list of other things they are needing
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