Last Christmas I did a long post about Christmas traditions and while we had halloween traditions growing up there was not much other then trick or treating and going to the pumpkin farm.
***I will blog soon about Jilli's hospital stay and everything going on health wise soon***
But today as I wake up at RMH for our second large holiday of the year (we were also here for Easter) I am realizing I am learning to let go of the little things.
Several years ago me would have been very sad about not doing our traditions for a holiday, but this year me is just grateful to be having the holiday, a pause out of daily life for something a little different. While I still love traditions I am learning that each year is a gift and no matter what we do each year it is perfect for that year. Jilli's first year I was so worried about making traditions and planning everything out just right and now I am more of a go with the flow. We missed the normal halloween party we got to last Friday but that is ok, today we are celebrating at RMH at a pace that is right for Jilli with people that care so much about us. We have friends that are coming over to rmh to spend time with us (shh Jilli doesn't know that yet, we need to get through OT first this morning and I need her to focus on that) and are excited for the fun of the day. This might not have been what I was picturing we would be doing today, but it is perfect for what our family needs right now and I am so thankful for RMH and the staff here for their love and kindness.
Also a huge thank you to everyone who is providing non food things for trick or treaters! Jilli has never been trick or treating other then to one friend who lives by us who gets her something non candy, because frankly I think it would be mean taking her around having her collect candy she can't eat. We asked her this year before she got sick if she wanted us to figure out a way to make trick or treating work and she said no, she didn't want to go to houses and get candy she couldn't eat. I told her some people are having non food options and she still said no, it wasn't a sad no, just a practical no... but I am so grateful for people who are breaking tradition and handing something other then candy out! It makes me hopeful that maybe some day we could go trick or treating if the girls decided to.
Tuesday, October 31, 2017
Friday, October 20, 2017
Bye therapy
This week we had tears. Wednesday afternoon was hard for us.
We said goodbye to a place we have been going to weekly since Jillian was 20months old for several hours a week....
The therapy location in our county is closing on Tuesday and this past Wednesday was our last day there. It was hard. There are so many amazing memories there. Tears of firsts and working hard. Laughs and joys. Amazing therapists that came along side us. As Jilli's Ot session was finishing she stopped listening to us and it took us a minute to catch on that the behavior was coming from it hitting her that it was her last time in this place. This wasn't a wanted end on our part or any of the staff that works there which made it even harder.
We have made the choice for now to switch to the main campus of the company we have been using as they are moving our therapists there however it is now an hour drive to get there and I am not looking forward to that in the midwest winters. Also instead of having therapy two days a week we are cramming everything into one which is not what is best for Jilli but what we need to do in this situation.
I am still angry at the whole situation. The parent company has been rather crappy through the whole thing. They might be a non for profit but they act like a for profit that is not good at making money choices. There has been a lot of frustration since they announced that they are closing about coverage of therapists and my kids actually getting therapy which was not the therapists fault.
To help Jilli calm down we came up with a plan, we let her use my phone to take pictures so she would remember. For her that really helped.
I will always be grateful for all of the work that has been done in that building to help my kids and saying goodbye was hard but like most of life, we roll on and onto the next adventure and we are trying to find the positives in that.
Here are the pics either Jilli wanted me to take or she took herself:
We said goodbye to a place we have been going to weekly since Jillian was 20months old for several hours a week....
The therapy location in our county is closing on Tuesday and this past Wednesday was our last day there. It was hard. There are so many amazing memories there. Tears of firsts and working hard. Laughs and joys. Amazing therapists that came along side us. As Jilli's Ot session was finishing she stopped listening to us and it took us a minute to catch on that the behavior was coming from it hitting her that it was her last time in this place. This wasn't a wanted end on our part or any of the staff that works there which made it even harder.
We have made the choice for now to switch to the main campus of the company we have been using as they are moving our therapists there however it is now an hour drive to get there and I am not looking forward to that in the midwest winters. Also instead of having therapy two days a week we are cramming everything into one which is not what is best for Jilli but what we need to do in this situation.
I am still angry at the whole situation. The parent company has been rather crappy through the whole thing. They might be a non for profit but they act like a for profit that is not good at making money choices. There has been a lot of frustration since they announced that they are closing about coverage of therapists and my kids actually getting therapy which was not the therapists fault.
To help Jilli calm down we came up with a plan, we let her use my phone to take pictures so she would remember. For her that really helped.
I will always be grateful for all of the work that has been done in that building to help my kids and saying goodbye was hard but like most of life, we roll on and onto the next adventure and we are trying to find the positives in that.
Here are the pics either Jilli wanted me to take or she took herself:
#metoo
My head has been debating this post for days. I wanted to have something productive to add to the conversation before adding my voice but this whole situation was a parenting reminder for me.
I sat last night talking to one of my best friends about some of our #metoo stories. I honestly don't know anyone woman my age or older who doesn't have one+.
High school me was 5'11", 120lb and a DD. Comments about my chest size happened all the time. The first time I remember a guy saying things guys shouldn't say to a girl I was 12. By the end of high school I was rather use to guys making stupid comments or even being physically abusive when I don't don what they wanted (I had a guy one day walk up to me in gym class and tell me I was going to be having sex with him and when I said no he slapped me hard enough across the face that you could still see his hand print hours later... eventually, hours later a teacher realized there was a bruise the shape of a hand on my face and the guy was suspended but he and his friend still met me at my locker after school threatening me to beat me up, thankfully screaming worked and people came running to save me). I have so many stories of crappy guys in middle and high school. An ex-boyfriend who shoved me into a lab table, classmates who made inappropriate comments. I remember once reaching out to a guy classmate as another guy was saying things I didn't appreciate and the other guy shrugged his shoulders without helping.
And the crazy thing was that I dated my now husband part of my freshman year of high school and we have now been together since our junior year of high school, I was not single a lot in high school and got married in college. I was telling my friend last night night that I am one of the "lucky" ones because I never had to deal with college dating and bar scene. I was 19 when I got married to a guy who has never pulled any of the crap... ie guys, I married the guy that didn't treat me crappy.
Brent and I were talking about this in the car the other day. That thinking about the crap without a plan to do something positive is just reliving old hurts and that is not helpful.
I was a preschooler the first time someone of the opposite sex touched me in a way that wasn't right. The same age as my oldest and I will admit there has been a part of my that it was really hard for me when she became this age but I have a choice to make something good out of it.
So I sat with my friends last night (a family with two boys) and we talked about how we are going to make an impact for the next generation. Because often these things feel hopeless but God has gifted us the children that live in my home and the children that are around me to influence and I have a choice how I am going to use that influence. Here are some of the things we talked about:
-Our kids are likely going to have situations in their life that are not going to be the best, no matter the topic, but our job as parents is to limit those when possible. To set up boundaries to not knowingly or ignorantly put our kids in more crappy situations, life is hard enough all on its own, its my job to help when I can. Our kids might still be young but we are already having conversations about their technology use, cell phones, TV shows ect, but we need to have those conversations now so we have a plan. As a parent it is my job to set boundaries... my kids still need to have a life to live and wrapping them in bubble wrap and keeping them in the house isn't going to work...
-So I also need to teach them to have boundaries for others. I need to teach them what is right and what is wrong and what to expect from others. I need to teach them how to have a voice when something is wrong and who to go to. This is an area of parenting I need to work at more. My kids spend 99% of their life with me but it is not going to be that way forever so I need to give them the tools they need to help keep themselves safe and I need to work harder at that (if you have great book of TV show suggestions for stranger danger ect I would love to have a conversation in the comments about ideas)
-My friend has two boys and her comment was that it is her job to teach her boys the way they should treat others. That this "locker room" talk people keep talking about isn't something you join. That you treat women with dignity and respect as sisters in Christ.
-Our culture also over sexualizes kids, from clothing to entertainment, to things that are said to kids and my job as a parent is to help prevent that as much as possible. My kids are still young and I get a say in what they wear and watch ect but it is my job to teach them the why and that starts now.
-Brent and I had a conversation about how it is his job to show the girls how guys should treat them. We have had conversations about watching what we say in front of the girls, I don't mind if my husband says I have a nice butt but we need to watch how that is said so that the girls do not think it is ok for random guys to be commenting on their bodies. We need to teach them the difference about what is ok in a marriage and what isn't and it is our job to display a Christian marriage to our girls.
-We also need to love the kids around us that we have an influence on. I have taught a large diversity of kids and I have seen so many situations where kids are not being taught these things by the adults in their life and that perpetuates cycles and it is our job as a community to step up to the plate and help these parents and these children. Pointing the finger doesn't change things, actions do. Love does.
Being a parent is hard. Being part of a community is hard. But worth it and both gifts. We can make steps forward. This all isn't going to change over night, its a commitment for the long hall but I have faith that we can step up to the plate because I have seen people in generations before me do it and I see my generation stepping up. Lets support one another.
I sat last night talking to one of my best friends about some of our #metoo stories. I honestly don't know anyone woman my age or older who doesn't have one+.
High school me was 5'11", 120lb and a DD. Comments about my chest size happened all the time. The first time I remember a guy saying things guys shouldn't say to a girl I was 12. By the end of high school I was rather use to guys making stupid comments or even being physically abusive when I don't don what they wanted (I had a guy one day walk up to me in gym class and tell me I was going to be having sex with him and when I said no he slapped me hard enough across the face that you could still see his hand print hours later... eventually, hours later a teacher realized there was a bruise the shape of a hand on my face and the guy was suspended but he and his friend still met me at my locker after school threatening me to beat me up, thankfully screaming worked and people came running to save me). I have so many stories of crappy guys in middle and high school. An ex-boyfriend who shoved me into a lab table, classmates who made inappropriate comments. I remember once reaching out to a guy classmate as another guy was saying things I didn't appreciate and the other guy shrugged his shoulders without helping.
And the crazy thing was that I dated my now husband part of my freshman year of high school and we have now been together since our junior year of high school, I was not single a lot in high school and got married in college. I was telling my friend last night night that I am one of the "lucky" ones because I never had to deal with college dating and bar scene. I was 19 when I got married to a guy who has never pulled any of the crap... ie guys, I married the guy that didn't treat me crappy.
Brent and I were talking about this in the car the other day. That thinking about the crap without a plan to do something positive is just reliving old hurts and that is not helpful.
I was a preschooler the first time someone of the opposite sex touched me in a way that wasn't right. The same age as my oldest and I will admit there has been a part of my that it was really hard for me when she became this age but I have a choice to make something good out of it.
So I sat with my friends last night (a family with two boys) and we talked about how we are going to make an impact for the next generation. Because often these things feel hopeless but God has gifted us the children that live in my home and the children that are around me to influence and I have a choice how I am going to use that influence. Here are some of the things we talked about:
-Our kids are likely going to have situations in their life that are not going to be the best, no matter the topic, but our job as parents is to limit those when possible. To set up boundaries to not knowingly or ignorantly put our kids in more crappy situations, life is hard enough all on its own, its my job to help when I can. Our kids might still be young but we are already having conversations about their technology use, cell phones, TV shows ect, but we need to have those conversations now so we have a plan. As a parent it is my job to set boundaries... my kids still need to have a life to live and wrapping them in bubble wrap and keeping them in the house isn't going to work...
-So I also need to teach them to have boundaries for others. I need to teach them what is right and what is wrong and what to expect from others. I need to teach them how to have a voice when something is wrong and who to go to. This is an area of parenting I need to work at more. My kids spend 99% of their life with me but it is not going to be that way forever so I need to give them the tools they need to help keep themselves safe and I need to work harder at that (if you have great book of TV show suggestions for stranger danger ect I would love to have a conversation in the comments about ideas)
-My friend has two boys and her comment was that it is her job to teach her boys the way they should treat others. That this "locker room" talk people keep talking about isn't something you join. That you treat women with dignity and respect as sisters in Christ.
-Our culture also over sexualizes kids, from clothing to entertainment, to things that are said to kids and my job as a parent is to help prevent that as much as possible. My kids are still young and I get a say in what they wear and watch ect but it is my job to teach them the why and that starts now.
-Brent and I had a conversation about how it is his job to show the girls how guys should treat them. We have had conversations about watching what we say in front of the girls, I don't mind if my husband says I have a nice butt but we need to watch how that is said so that the girls do not think it is ok for random guys to be commenting on their bodies. We need to teach them the difference about what is ok in a marriage and what isn't and it is our job to display a Christian marriage to our girls.
-We also need to love the kids around us that we have an influence on. I have taught a large diversity of kids and I have seen so many situations where kids are not being taught these things by the adults in their life and that perpetuates cycles and it is our job as a community to step up to the plate and help these parents and these children. Pointing the finger doesn't change things, actions do. Love does.
Being a parent is hard. Being part of a community is hard. But worth it and both gifts. We can make steps forward. This all isn't going to change over night, its a commitment for the long hall but I have faith that we can step up to the plate because I have seen people in generations before me do it and I see my generation stepping up. Lets support one another.
 |
| I might not be Wonder Woman but we can all work together as a community on this... and maybe we could start by sexualizing Wonder woman less... hmmm.... |
Wednesday, October 18, 2017
mini vaca and award
I received a call about two weeks ago from my friend Stacy and her daughters Charlotte and Ellie. Stacy is Jilli's best friend Caroline's mom. Charlotte and Ellie participate in a program for siblings with disabilities and each year they take nominations for the caregiver of the year award and the kids who participate in the sibling program have to write up why they think the person they nominated should win. The phone call I got was from the girls letting me know they decided to nominate me and I won. I am still floored and surprised and so honored. What the girls wrote made me cry and was so sweet. It was so sweet of the girls to think of me and take the time to write about me.
I just keep thinking of all of the amazing caregivers I know in the special needs community. I think my life has help to prepare me for the girls but at the same time I also think that when you have a kid with different needs its your job to step up to the plate and I see so many amazing parents that do that every day, we love our kids and out of that we work to do what is best for them.
The event where the award was presented was a few hours from our house so Brent and I decided we would head to that area the night before and stay in a hotel and then come back home the next day after the event. After talking with someone who lives in the area we figured out a good hotel with an amazing pool for the girls. They had a kid pool with 12in deep water and little slide and water features. It was perfect! Stacy and her family also spent the night at the same hotel and the kids got to swim together! It was a fun little get away. Jilli kept calling it her special vacation!
The event was amazing. There was a purse fundraiser going on during it which was really fun to see. A former state governor presented the award and talked about his life story and taking care of his wife with Alzheimers. He was funny too! The girls were well behaved especially for a fancy event where they were the only kids there.
After the event we headed home but decided to take the long way home through little towns and back roads and go to a little store. I haven't been to this little store before but I have been to its sister store a few towns over. It is one of those stores you can find a little bit of everything at! But the really fun thing is toy shopping there! They have toys sitting on their shelves that have been there for years! It is like treasure hunting. We found Jilli's Bear in the Big Blue House game there when she was younger which it is so hard to find anything from that show anymore. They also sell Playmobil and have pieces sitting there that have retired a while ago and their Playmobile is always 25% off! Boxes of toys are stacked floor to ceiling. I had a lot of fun Christmas shopping there! The toys they have are not the same things you find at the big box stores and I love supporting a little store. We found Lydia's Christmas gift and gifts for friends. Jilli got to pick out a small Playmobil set for her good behavior and picked out the florist. She loves gardening and was so excited for a Playmobil with flowers.
We then headed home on more back roads. Brent and I were able to talk about life and the kids slept off and on. I managed to chip a tooth on the way home just by talking (yea EDS) so I go tomorrow to have that looked at.
It was a really fun couple of days. I am so honored for the girls to have nominated me for the award and for the selection committee for choosing me. Thank you to everyone who helps to support us and love us so we can support and love the girls and the special needs community around us!
***on a side note, if you mainly get to this blog from facebook (and I know by statistics most of you do based on referring url), if you want to stay up to date and not miss any posts subscribe to the blog on the side (web view only) because facebook decides to do funny things and sometimes my own hubby is never seeing on facebook when a post a blog post because a good amount of the time right now it doesn't show up in his news feed which means that is happening to others to***
I just keep thinking of all of the amazing caregivers I know in the special needs community. I think my life has help to prepare me for the girls but at the same time I also think that when you have a kid with different needs its your job to step up to the plate and I see so many amazing parents that do that every day, we love our kids and out of that we work to do what is best for them.
The event where the award was presented was a few hours from our house so Brent and I decided we would head to that area the night before and stay in a hotel and then come back home the next day after the event. After talking with someone who lives in the area we figured out a good hotel with an amazing pool for the girls. They had a kid pool with 12in deep water and little slide and water features. It was perfect! Stacy and her family also spent the night at the same hotel and the kids got to swim together! It was a fun little get away. Jilli kept calling it her special vacation!
The event was amazing. There was a purse fundraiser going on during it which was really fun to see. A former state governor presented the award and talked about his life story and taking care of his wife with Alzheimers. He was funny too! The girls were well behaved especially for a fancy event where they were the only kids there.
After the event we headed home but decided to take the long way home through little towns and back roads and go to a little store. I haven't been to this little store before but I have been to its sister store a few towns over. It is one of those stores you can find a little bit of everything at! But the really fun thing is toy shopping there! They have toys sitting on their shelves that have been there for years! It is like treasure hunting. We found Jilli's Bear in the Big Blue House game there when she was younger which it is so hard to find anything from that show anymore. They also sell Playmobil and have pieces sitting there that have retired a while ago and their Playmobile is always 25% off! Boxes of toys are stacked floor to ceiling. I had a lot of fun Christmas shopping there! The toys they have are not the same things you find at the big box stores and I love supporting a little store. We found Lydia's Christmas gift and gifts for friends. Jilli got to pick out a small Playmobil set for her good behavior and picked out the florist. She loves gardening and was so excited for a Playmobil with flowers.
We then headed home on more back roads. Brent and I were able to talk about life and the kids slept off and on. I managed to chip a tooth on the way home just by talking (yea EDS) so I go tomorrow to have that looked at.
It was a really fun couple of days. I am so honored for the girls to have nominated me for the award and for the selection committee for choosing me. Thank you to everyone who helps to support us and love us so we can support and love the girls and the special needs community around us!
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| Thank you to my friend Yoomi who sells Lularoe for letting me come over and shop and thank you mommy for the new outfit! |
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| The girls curled up in their stroller for bed with their blankets... they both love their blankets! |
Friday, October 13, 2017
Some questions are ok not to have answers to
This morning I read Jon Foreman's new article in Huffington Post. I frequent listening to interviews he does (its a good break from politics). Honestly he sends my mind searching into my faith more then many other people do. I have had to stop watching Switchfoot/Jon Foreman stuff late at night because otherwise my mind is just thinking too much to sleep.
Something Jon does is he asks a lot of questions... even when people are interviewing him. And the thing is that often he isn't looking for the other person to answer. Often they are deep questions. Questions you can tell he is wrestling with but I appreciate that he is willing to admit he is wrestling with something without having the answer to it.
I was driving to a mall today to meet one of my closest friends. I knew where the mall was because it is close-ish to where I went to college however I have never gone there from our house as this mall is about an hour from our house. I put it in my GPS and let it guide us there. It brought us to a road under construction. We bounced off and on the same highway multiple times. Some of the roads we were on I knew from having lived in that area several years ago (but am rarely in that area now) but other roads I am sure I have never been on. I was on county roads where I went miles without seeing anyone else. I laughed at one point in my head thinking how grateful I was for a GPS because if I had car troubles I had no idea where I was, just what I was between.
But I trusted the GPS. This was not the way I would have taken, however it was faster then my way. It wasn't roads I knew. But I knew I put the right place in for a destination so I knew it was getting me to the right place even if the route seemed odd to me.
I was in the car so that means my mind was thinking...
I started to think about life's unanswered questions. It we are honest there are so many of them. I am a church girl. I have been brought up in the same church my great grandparents went to. There is a lot about me that takes the Bible for what it says because it says it. And I am sure there are many of you that thinks that makes me crazy.
Brent has a pod cast that he likes to listen to that debates different Bible theory questions... I am not interested in it at all... I am often ok with knowing what the debates are but not joining them. I believe Jesus is the way, the truth and the light... I know my foundation, so for me the other stuff that doesn't impact that I often feel like I don't need an answer to those questions because it doesn't change my foundation.
I was also thinking about how that applies to my life experience. I was really annoyed and angry when Jilli was little that we didn't have a name for whatever is going on. I think a part of it was that there were some people in our lives who didn't see her struggles or understand and therefor said some hurtful things so I longed to have something definitive to tell them, a name. But we are almost 5 years into this journey and still no name. And you know what... at this point that is ok. That question isn't meant to be answered today. Maybe someday. Maybe not. Maybe forever we will be playing whack-a-mole with symptoms, and if that is what it is... then that is what it is.
At one point while walking the mall and shopping at all of the kids stores while pushing our strollers I thought back to college us. See this friend and I both had our own journey with infertility. I remember our days after graduating college where we both just longed so much to be moms. We longed for days like we had today. I don't know why exactly both of us struggled with infertility... but I know God has timing. I know He created our kids and is growing a sweet baby in my friend's belly. What I do know is that I am grateful for today. I am grateful for my time with my amazing friend. I am grateful my kids were able to have a day where they could be at the mall. I am grateful for God's peace in situations.
Sometimes not all questions need an answer and sometimes it is our job to be content with that. I am not saying that is always easy but something to think about when the answers are not coming.
Maybe every situation doesn't need an earthly answer?
Something Jon does is he asks a lot of questions... even when people are interviewing him. And the thing is that often he isn't looking for the other person to answer. Often they are deep questions. Questions you can tell he is wrestling with but I appreciate that he is willing to admit he is wrestling with something without having the answer to it.
I was driving to a mall today to meet one of my closest friends. I knew where the mall was because it is close-ish to where I went to college however I have never gone there from our house as this mall is about an hour from our house. I put it in my GPS and let it guide us there. It brought us to a road under construction. We bounced off and on the same highway multiple times. Some of the roads we were on I knew from having lived in that area several years ago (but am rarely in that area now) but other roads I am sure I have never been on. I was on county roads where I went miles without seeing anyone else. I laughed at one point in my head thinking how grateful I was for a GPS because if I had car troubles I had no idea where I was, just what I was between.
But I trusted the GPS. This was not the way I would have taken, however it was faster then my way. It wasn't roads I knew. But I knew I put the right place in for a destination so I knew it was getting me to the right place even if the route seemed odd to me.
I was in the car so that means my mind was thinking...
I started to think about life's unanswered questions. It we are honest there are so many of them. I am a church girl. I have been brought up in the same church my great grandparents went to. There is a lot about me that takes the Bible for what it says because it says it. And I am sure there are many of you that thinks that makes me crazy.
Brent has a pod cast that he likes to listen to that debates different Bible theory questions... I am not interested in it at all... I am often ok with knowing what the debates are but not joining them. I believe Jesus is the way, the truth and the light... I know my foundation, so for me the other stuff that doesn't impact that I often feel like I don't need an answer to those questions because it doesn't change my foundation.
I was also thinking about how that applies to my life experience. I was really annoyed and angry when Jilli was little that we didn't have a name for whatever is going on. I think a part of it was that there were some people in our lives who didn't see her struggles or understand and therefor said some hurtful things so I longed to have something definitive to tell them, a name. But we are almost 5 years into this journey and still no name. And you know what... at this point that is ok. That question isn't meant to be answered today. Maybe someday. Maybe not. Maybe forever we will be playing whack-a-mole with symptoms, and if that is what it is... then that is what it is.
At one point while walking the mall and shopping at all of the kids stores while pushing our strollers I thought back to college us. See this friend and I both had our own journey with infertility. I remember our days after graduating college where we both just longed so much to be moms. We longed for days like we had today. I don't know why exactly both of us struggled with infertility... but I know God has timing. I know He created our kids and is growing a sweet baby in my friend's belly. What I do know is that I am grateful for today. I am grateful for my time with my amazing friend. I am grateful my kids were able to have a day where they could be at the mall. I am grateful for God's peace in situations.
Sometimes not all questions need an answer and sometimes it is our job to be content with that. I am not saying that is always easy but something to think about when the answers are not coming.
Maybe every situation doesn't need an earthly answer?
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| I bet you don't know what this picture Lydia took is of... |
Monday, October 9, 2017
Tonight
Tonight I stood in the kitchen and smiled...
This is a picture of Jilli putting cup cake liners into the pan. I know it seams small and like an every day thing but tonight it made me smile.
If you know my grandma you know she is a good cook. For several years before I had the girls I was lucky enough to bake Christmas cookies with her. Growing up grandma made a different kid of cookie or candy for each step leading to the second floor. Baking is a way I bonded with her. If you are with my husband's boy scout troop you will know me by the name "Princess Cupcake" because when we were in high school (I met my husband the summer before high school when my brother joined the boy scout troop he was in) and we would do family scouting events I would always make cup cakes for everyone and thus got the nick name. I like to bake but cleaning up is a pain so I don't do it often anymore but at one point in my life I loved cake decorating and baking.
There is very little about the girl's needs that make me sad. I see their different medical devices as the best thing for them. Jilli's wheelchair helps her to be more free to move around the world. Her feeding tube helps her get the food she needs. Her oxygen helps her have the energy she needs to be a kid. Her leg braces help her walk. I see all of those things as help. I know how hard things are without those things so I am grateful for them.
When Jilli was really little I was sad for a very short time (probably a couple of days at most) about the fact that in my head that Jilli wouldn't want to learn to bake from me to pass down those traditions and because baking has been a part of me.
But as she has gotten older she has started to ask to learn how to bake. She is not interested in eating at all. We all know that the girls' tubes are amazing for them and honestly the thought of them eating gives me anxiety because I know how much that hurts their body. However she loves to pretend to cook. She loves to help me bake. She says she likes spending the time with mommy and she likes to be a big girl. She isn't sad she can't eat it but rather excited that other people get to enjoy something she made. While the rest of us are so focused on the end of a cupcake, she loves the making process and seeing other people happy.
So while she may not eat cupcakes she still loves to spend that time with me making them and that is all I had longed for... the time and memories. What I learned was that the actual eating of the cupcakes is not that big of a deal.
While the cupcakes were in the over Jilli went over and played in her play kitchen. We didn't buy her any play food until she asked for it. I wanted that to be up to her, but she enjoys playing with play food... the has funny names for things... its cute! Her favorite thing in her play kitchen is the play blender because that is how her food is made (we use a blender to make the girls' formula)
While Jilli and I were working on that (and Lydia was biting a teether... girl has mad cranky skills tonight!) Brent was on the phone with someone who called to ask for a small favor and was telling Brent about something going on in their life right now. The conversation was coming to a close and then I heard my hubby ask this other guy if he could pray for him and then he stopped right now and prayed for this other person. My heart fell more in love with him! If you knew him a few years ago this is not something he would have said. I love watching him grow in Christ!
Jilli also made me really proud today! I told her that after her birthday we were going to have move her little people toys to Lydia's play area because Lydia is hitting the point where she likes Little People and Jilli is moving on to playing with other things more and Jilli stopped and grabbed a bucket and started putting the Little People stuff in the bucket and brought it to Lydia because she knew she would love to play with it now and this way she could get her play area clean. Jilli's birthday is not for two more months! I am so proud of her!
Now back to debating politics and religion with my hubby... yes that is something we do at our house... no we don't agree on everything... but we always come from the foundation of loving people and that you don't have to fit into a category to be a valuable member of this country...
This is a picture of Jilli putting cup cake liners into the pan. I know it seams small and like an every day thing but tonight it made me smile.
If you know my grandma you know she is a good cook. For several years before I had the girls I was lucky enough to bake Christmas cookies with her. Growing up grandma made a different kid of cookie or candy for each step leading to the second floor. Baking is a way I bonded with her. If you are with my husband's boy scout troop you will know me by the name "Princess Cupcake" because when we were in high school (I met my husband the summer before high school when my brother joined the boy scout troop he was in) and we would do family scouting events I would always make cup cakes for everyone and thus got the nick name. I like to bake but cleaning up is a pain so I don't do it often anymore but at one point in my life I loved cake decorating and baking.
There is very little about the girl's needs that make me sad. I see their different medical devices as the best thing for them. Jilli's wheelchair helps her to be more free to move around the world. Her feeding tube helps her get the food she needs. Her oxygen helps her have the energy she needs to be a kid. Her leg braces help her walk. I see all of those things as help. I know how hard things are without those things so I am grateful for them.
When Jilli was really little I was sad for a very short time (probably a couple of days at most) about the fact that in my head that Jilli wouldn't want to learn to bake from me to pass down those traditions and because baking has been a part of me.
But as she has gotten older she has started to ask to learn how to bake. She is not interested in eating at all. We all know that the girls' tubes are amazing for them and honestly the thought of them eating gives me anxiety because I know how much that hurts their body. However she loves to pretend to cook. She loves to help me bake. She says she likes spending the time with mommy and she likes to be a big girl. She isn't sad she can't eat it but rather excited that other people get to enjoy something she made. While the rest of us are so focused on the end of a cupcake, she loves the making process and seeing other people happy.
So while she may not eat cupcakes she still loves to spend that time with me making them and that is all I had longed for... the time and memories. What I learned was that the actual eating of the cupcakes is not that big of a deal.
While the cupcakes were in the over Jilli went over and played in her play kitchen. We didn't buy her any play food until she asked for it. I wanted that to be up to her, but she enjoys playing with play food... the has funny names for things... its cute! Her favorite thing in her play kitchen is the play blender because that is how her food is made (we use a blender to make the girls' formula)
While Jilli and I were working on that (and Lydia was biting a teether... girl has mad cranky skills tonight!) Brent was on the phone with someone who called to ask for a small favor and was telling Brent about something going on in their life right now. The conversation was coming to a close and then I heard my hubby ask this other guy if he could pray for him and then he stopped right now and prayed for this other person. My heart fell more in love with him! If you knew him a few years ago this is not something he would have said. I love watching him grow in Christ!
Jilli also made me really proud today! I told her that after her birthday we were going to have move her little people toys to Lydia's play area because Lydia is hitting the point where she likes Little People and Jilli is moving on to playing with other things more and Jilli stopped and grabbed a bucket and started putting the Little People stuff in the bucket and brought it to Lydia because she knew she would love to play with it now and this way she could get her play area clean. Jilli's birthday is not for two more months! I am so proud of her!
Now back to debating politics and religion with my hubby... yes that is something we do at our house... no we don't agree on everything... but we always come from the foundation of loving people and that you don't have to fit into a category to be a valuable member of this country...
Sunday, October 8, 2017
Beautiful things
If you read the "getting pregnant" tab on this blog you will read about how we found out we were having Jillian, however that post only slightly goes into the 18months before finding out we were expecting Jillian.
We tried for 18mo to get pregnant. There were a lot of tears. A lot of heartbreak. Honestly it was one of the hardest parts of my life. It is one of the times I wrestled with God the most.
During that time the song Beautiful things by Gungor came out.
The song starts:
All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
I clung to this song. I cried to this song. I prayed during this song. I clung to the words that God makes beautiful things out of us.
Then when we became pregnant with Jilli I cried every time the song came on thanking God.
This morning we sang this song at church. I admit I don't listen to this song as much as I once did. I am in a different season of my life but today the song hit again and tears were in my eyes.
Today Jilli was using her new wheelchair at church. As the song started she started to use her chair to dance. She twirled in circles. She worshiped with her wheelchair.
It reminded me how far we have come from those days of longing to have a baby.
He makes beautiful things out of dust.
He made her.
The amazing girl she is!
I know many people see her wheelchair, oxygen, feeding pump and leg braces and think that nothing about that is beautiful but I challenge that.
This little girl knows how to use a wheelchair to worship instead of seeing it as a hindrance.
Her body gets its food a different way, and you know what, she thinks that is really cool and it annoys her sometimes that the rest of us have to stop to eat because she sees it as getting in the way of playing.
She loves her stickers for her oxygen.
She is beautiful inside and out.
I see God has shown us so much beauty by seeing life with her eyes.
The second verse of that song is:
All around
Hope is springing up from this old ground
Out of chaos life is being found in You
And that is so true! From the pain of wondering when or if we were ever going to have kids to being blessed with these two AMAZING girl. God provides.
We tried for 18mo to get pregnant. There were a lot of tears. A lot of heartbreak. Honestly it was one of the hardest parts of my life. It is one of the times I wrestled with God the most.
During that time the song Beautiful things by Gungor came out.
The song starts:
All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
I clung to this song. I cried to this song. I prayed during this song. I clung to the words that God makes beautiful things out of us.
Then when we became pregnant with Jilli I cried every time the song came on thanking God.
This morning we sang this song at church. I admit I don't listen to this song as much as I once did. I am in a different season of my life but today the song hit again and tears were in my eyes.
Today Jilli was using her new wheelchair at church. As the song started she started to use her chair to dance. She twirled in circles. She worshiped with her wheelchair.
It reminded me how far we have come from those days of longing to have a baby.
He makes beautiful things out of dust.
He made her.
The amazing girl she is!
I know many people see her wheelchair, oxygen, feeding pump and leg braces and think that nothing about that is beautiful but I challenge that.
This little girl knows how to use a wheelchair to worship instead of seeing it as a hindrance.
Her body gets its food a different way, and you know what, she thinks that is really cool and it annoys her sometimes that the rest of us have to stop to eat because she sees it as getting in the way of playing.
She loves her stickers for her oxygen.
She is beautiful inside and out.
I see God has shown us so much beauty by seeing life with her eyes.
The second verse of that song is:
All around
Hope is springing up from this old ground
Out of chaos life is being found in You
And that is so true! From the pain of wondering when or if we were ever going to have kids to being blessed with these two AMAZING girl. God provides.
 |
| big girl at lunch today... she likes Cracker Barrel because they have a store in the restaurant and she has one of their dolls so she loves looking at the stuff for the dolls. Her hair is getting so long... and no she does not want to cut it! |
Friday, October 6, 2017
Meds and wheelchair
Its been a busy week and while it is Friday and that normally makes people smile, this week has been a big smile.
Wednesday mid day I got a text from the pharmacy that Jillian's neb med was ready and listed $0 for the amount due. I headed off to Walgreens quickly and Medicaid came through... they paid for the neb med!!! This is a huge load off my mind! Jilli will have more crashes and we need this med during them and knowing that we have some now is amazing. Thank you to everyone who prayed for that! I started fighting for that med in April and months of work paid off!
As we were headed to dinner on Wednesday Brent grabbed the mail and in it was a package from Amazon from a friend of ours. Jillian takes multiple vitamins that are a part of her med routine and they really help however because they are not prescription drugs insurance doesn't pay for them. She takes CoQ10 in a large volume (60ml a day) and that is one we pay out of pocket for. We price hunt for it and when it goes on sale we stock up. I got a text on Saturday morning from my friend Stacy telling me that Amazon had it on sale for a good price and had a $5 off coupon! Caroline is on the med too so we frequently are letting each other know the best prices for it but this price was by far the cheapest it has been. Brent went on and ordered a few for Jilli. Wednesday we got a bottle with a gift note from Stacy... she wanted to make sure (she was ordering hers before we were up and moving) that we got some too at the grate price so she sent us a bottle as a gift. True friend there! I never thought I would be so touched by someone sending me vitamins in the mail but in this journey its those things that make me stop and be so thankful.
Yesterday we had 8:45am PT an hour away from our house (my children are not morning people) and at 9am the guy from the wheelchair place came with the rest of Jillian's parts for her wheelchair! He put the new wheels on which work so much better! He also put on brake extenders which make it easier for her to put the breaks on and a butterfly harness for days her body is too weak to sit up in the chair. He also helped with the Smart Drive more since he knows about them. Her wheelchair is now complete!!! This has been a challenging journey that took 8 months to get her the chair she needs but the day has finally come where all of that has paid off! We stopped at RMH yesterday to drop some stuff off since we were in the area and Jilli loved showing off her chair to everyone. She still has a ways to go with learning how to work the smart drive but she will get it, it will just take time and work. After we left the PT place (Jilli was tired they put her in this really cool contraption yesterday and she got to jump... jumping is not something Jilli's muscle can do on their own so being in this and getting to jump made her smile from ear to ear!) we ran to buybuybaby to pick up a diaper bag backpack because with Jilli in the wheelchair now I am just carrying Lydia more and the bag I was using wasn't working. I found a bag that fits an oxygen tank it it! Then we met Brent for lunch. When we got to lunch the scheduler from the wheelchair place called to tell me Jilli's wheels were in and asked when we could schedule a time to put them on... the wheels that had just been put on a couple of hours before. Yea...
Yesterday was also exciting as a mom because we headed to a teaching shop near RMH to look at their Playmobil. Jilli LOVES Playmobil and has decided that is what she wants for her birthday and Christmas this year and she loves to go to stores that sell Playmobil because then she can look at it. The large piece she wants for her birthday went on a great sale on Amazon last week so we picked it up. The big piece she wants for Christmas is a retired piece so I had been searching for it however since it is retired everyone has upped the price on it. We walked into the teacher store and there sitting on the clearance shelf was the piece she was looking for marked down in price! The very kind sales person helped me by grabbing it from the shelf so Jilli didn't see. She even wrapped it in Christmas paper for me! Then when checking out I as surprised to learn I could use my teacher discount there on top of the clearance price! And then on top of it they brought it out tot my car for me and put it in so Jilli wouldn't see. The service there was AMAZING! I use to work in an independent toy store and was taught how to have good customer service and this place yesterday was on their A game! Jilli didn't even notice that I bought anything and was just thrilled that they have the full sized Playmobil catalog that she got to take home and has been looking at since.
This has been a week of resolutions.
Wednesday mid day I got a text from the pharmacy that Jillian's neb med was ready and listed $0 for the amount due. I headed off to Walgreens quickly and Medicaid came through... they paid for the neb med!!! This is a huge load off my mind! Jilli will have more crashes and we need this med during them and knowing that we have some now is amazing. Thank you to everyone who prayed for that! I started fighting for that med in April and months of work paid off!
As we were headed to dinner on Wednesday Brent grabbed the mail and in it was a package from Amazon from a friend of ours. Jillian takes multiple vitamins that are a part of her med routine and they really help however because they are not prescription drugs insurance doesn't pay for them. She takes CoQ10 in a large volume (60ml a day) and that is one we pay out of pocket for. We price hunt for it and when it goes on sale we stock up. I got a text on Saturday morning from my friend Stacy telling me that Amazon had it on sale for a good price and had a $5 off coupon! Caroline is on the med too so we frequently are letting each other know the best prices for it but this price was by far the cheapest it has been. Brent went on and ordered a few for Jilli. Wednesday we got a bottle with a gift note from Stacy... she wanted to make sure (she was ordering hers before we were up and moving) that we got some too at the grate price so she sent us a bottle as a gift. True friend there! I never thought I would be so touched by someone sending me vitamins in the mail but in this journey its those things that make me stop and be so thankful.
Yesterday we had 8:45am PT an hour away from our house (my children are not morning people) and at 9am the guy from the wheelchair place came with the rest of Jillian's parts for her wheelchair! He put the new wheels on which work so much better! He also put on brake extenders which make it easier for her to put the breaks on and a butterfly harness for days her body is too weak to sit up in the chair. He also helped with the Smart Drive more since he knows about them. Her wheelchair is now complete!!! This has been a challenging journey that took 8 months to get her the chair she needs but the day has finally come where all of that has paid off! We stopped at RMH yesterday to drop some stuff off since we were in the area and Jilli loved showing off her chair to everyone. She still has a ways to go with learning how to work the smart drive but she will get it, it will just take time and work. After we left the PT place (Jilli was tired they put her in this really cool contraption yesterday and she got to jump... jumping is not something Jilli's muscle can do on their own so being in this and getting to jump made her smile from ear to ear!) we ran to buybuybaby to pick up a diaper bag backpack because with Jilli in the wheelchair now I am just carrying Lydia more and the bag I was using wasn't working. I found a bag that fits an oxygen tank it it! Then we met Brent for lunch. When we got to lunch the scheduler from the wheelchair place called to tell me Jilli's wheels were in and asked when we could schedule a time to put them on... the wheels that had just been put on a couple of hours before. Yea...
Yesterday was also exciting as a mom because we headed to a teaching shop near RMH to look at their Playmobil. Jilli LOVES Playmobil and has decided that is what she wants for her birthday and Christmas this year and she loves to go to stores that sell Playmobil because then she can look at it. The large piece she wants for her birthday went on a great sale on Amazon last week so we picked it up. The big piece she wants for Christmas is a retired piece so I had been searching for it however since it is retired everyone has upped the price on it. We walked into the teacher store and there sitting on the clearance shelf was the piece she was looking for marked down in price! The very kind sales person helped me by grabbing it from the shelf so Jilli didn't see. She even wrapped it in Christmas paper for me! Then when checking out I as surprised to learn I could use my teacher discount there on top of the clearance price! And then on top of it they brought it out tot my car for me and put it in so Jilli wouldn't see. The service there was AMAZING! I use to work in an independent toy store and was taught how to have good customer service and this place yesterday was on their A game! Jilli didn't even notice that I bought anything and was just thrilled that they have the full sized Playmobil catalog that she got to take home and has been looking at since.
This has been a week of resolutions.
Wednesday, October 4, 2017
100
I set a mental goal in my head each year of posting about 100 times in a year. Some years I hit that... other years I don't. Since this blog took the turn from teacher blog to special needs mom blog I have done 80+ posts a year.
Some days I feel like writing, it helps me to relax. Some days it is a form of note keeping. Some days I think I have no idea what I will blog about next because there are no topics on my mind. Sometimes there are blog posts that are only written in my head but are never composed.
This year there has been more political posting then I ever have before... I am not a person who likes to argue politics. Remember I am a conflict avoidance person. It doesn't mean that I haven't had views on things in the past but I have felt this year that the political world and my world with raising two medically complex kids have collided so my nature wants to keep quite about things but the advocate in me knows to best help my kids I need to speak out about laws that would negatively effect them. I still worry every time I post something political. I still hold my breath. Now that maybe healthcare is going to take a pause (still not opposed to working together to fix healthcare...) I need to spend time looking into H.R.620 because I need to know more about it and take a position and make my position known to those who represent me because this is another law that effects my kids (from what I have read so far I don't like this bill but I like to have all the facts first) I think it will always make me antsy when I post anything political... its who I am but that doesn't mean I should not talk.
This blog this year had also been a lot about Jilli's medical crashes. So far this year we are at 3 of them and they have taken a substantial part of our year. From the two "smaller" ones on Febuary and September to the massive one in April, these medical crashes have been on our minds a lot this year.
Jilli started school this year and hopefully as time goes on I will write about that more. Today we learned about color mixing and spelling color words. Jilli this year has grown in her friendships with others and thinking about others. I love her thoughtful spirit. She still loves her princesses and Daniel Tiger and Peppa Pig and Super Girls but is also growing up some and loves Playmobil... her big girl toys. She is excited to learn how to read and add.
This year has seen Lydia grow a lot. At the start of the year she was just sitting but now she is into everything. She has several words and makes her wishes known. Her sleeping is still not much better... maybe next year will improve that some. She is still just as cuddly! She lights up when her favorite people are around and Nate is probably close to the top of that list. She has a adventure spirit and it is fun watching her learn. She has developed a love for Elmo and baby dolls. And she has started to pt you back when she gives you a hug.
This blog also went to Disney this year. My heart and mind are already itching to go back. We are always talking about when can we go back. Jilli has a running bucket list of things she wants to do at Disney. The planning of a Disney trip is a stress relief for me and being there is magic. I know not everyone gets that, and thats ok, but for me it is "my place." We don't currently have any plans set of our next trip... that funny money thing... so for now I will keep watching my Disney pod casts and following my Disney groups but hopefully soonish this blog will go back to Disney again.
This year we have spent a lot of time at RMH. A lot of my posts have included pictures from there. Over the past year RMH has really become our second home. The staff and volunteers have become our cheerleaders. I even had one of the post from this blog featured on their site which is a huge honor. We are in their promo video for the year which is so sweet because we are so thankful to be able to help share their story and mission. Many amazing memories this year have been there.
So this year will have more then 100 posts because the year is not over yet! But for some reason 100 felt significant this year.
Some days I feel like writing, it helps me to relax. Some days it is a form of note keeping. Some days I think I have no idea what I will blog about next because there are no topics on my mind. Sometimes there are blog posts that are only written in my head but are never composed.
This year there has been more political posting then I ever have before... I am not a person who likes to argue politics. Remember I am a conflict avoidance person. It doesn't mean that I haven't had views on things in the past but I have felt this year that the political world and my world with raising two medically complex kids have collided so my nature wants to keep quite about things but the advocate in me knows to best help my kids I need to speak out about laws that would negatively effect them. I still worry every time I post something political. I still hold my breath. Now that maybe healthcare is going to take a pause (still not opposed to working together to fix healthcare...) I need to spend time looking into H.R.620 because I need to know more about it and take a position and make my position known to those who represent me because this is another law that effects my kids (from what I have read so far I don't like this bill but I like to have all the facts first) I think it will always make me antsy when I post anything political... its who I am but that doesn't mean I should not talk.
This blog this year had also been a lot about Jilli's medical crashes. So far this year we are at 3 of them and they have taken a substantial part of our year. From the two "smaller" ones on Febuary and September to the massive one in April, these medical crashes have been on our minds a lot this year.
Jilli started school this year and hopefully as time goes on I will write about that more. Today we learned about color mixing and spelling color words. Jilli this year has grown in her friendships with others and thinking about others. I love her thoughtful spirit. She still loves her princesses and Daniel Tiger and Peppa Pig and Super Girls but is also growing up some and loves Playmobil... her big girl toys. She is excited to learn how to read and add.
This year has seen Lydia grow a lot. At the start of the year she was just sitting but now she is into everything. She has several words and makes her wishes known. Her sleeping is still not much better... maybe next year will improve that some. She is still just as cuddly! She lights up when her favorite people are around and Nate is probably close to the top of that list. She has a adventure spirit and it is fun watching her learn. She has developed a love for Elmo and baby dolls. And she has started to pt you back when she gives you a hug.
This blog also went to Disney this year. My heart and mind are already itching to go back. We are always talking about when can we go back. Jilli has a running bucket list of things she wants to do at Disney. The planning of a Disney trip is a stress relief for me and being there is magic. I know not everyone gets that, and thats ok, but for me it is "my place." We don't currently have any plans set of our next trip... that funny money thing... so for now I will keep watching my Disney pod casts and following my Disney groups but hopefully soonish this blog will go back to Disney again.
This year we have spent a lot of time at RMH. A lot of my posts have included pictures from there. Over the past year RMH has really become our second home. The staff and volunteers have become our cheerleaders. I even had one of the post from this blog featured on their site which is a huge honor. We are in their promo video for the year which is so sweet because we are so thankful to be able to help share their story and mission. Many amazing memories this year have been there.
So this year will have more then 100 posts because the year is not over yet! But for some reason 100 felt significant this year.
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| January |
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| October |
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| January |
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| October |
Tuesday, October 3, 2017
American helping
I was in the kitchen this morning getting morning meds ready. Jilli was working on school work and Lydia was not happy I was not in the living room. This is not an uncommon situation at our house. Jilli said she would go help Lydia and I told her to work on her school work and I would be in the living room in just a second. Jilli was at the dinning room table which is right behind the couch and someplace you can see the entire living room. Next I heard Jilli tell Lydia that it was ok because she was in the living room with her. Lydia wasn't mad that there was no one in the living room, she was mad I wasn't in the living room. When I walked in the room Lydia was still crying and Jilli was playing iPad. I asked Jilli what she was doing and she said she stopped doing her school work and came into the living room because Lydia was lonely so she was waiting for me to get back in the room... while playing iPad... nice try Jillian.
But my head drew to how often that is the American way of helping. We see a problem... we don't look at the root cause of the problem and we try to solve the problem how works best for us.
We saw it this weekend with a golf trophy being dedicated to hurricane victims like that was going to solve the problem. We see it when people throw tax donation money at an organization. We see it when Americans go in to "fix" someplace. Too often we see it in American mission work.
And I am not saying that those things are all done with bad intentions (although on the topic of giving for tax brakes I feel there is some lack of purity there) What I am saying is we often look for an "easy" way for me to "fix" a problem.
One of the ways I have been evaluating this is my life lately is asking myself where I am joining along with people and where am I serving at people. Those are two different things and each one has its time and place but the joining along side with people often digs a lot deeper then serving at people.
Let me play this out for you:
Say you serve at a soup kitchen. You serve a meal. You do your duty and then leave. Someone was fed that needed to eat. That is not bad, but imagine if you invested more time into those people... imagine if you developed relationships... imagine if you mentored them and helped them thrive. Its more of a time commitment. Its more risk of getting hurt. But it helps move that person from just getting fed to thriving.
Its engaging with people. My dad taught me this by his actions when I was younger. My dad use to manage a traveling homeless shelter one Saturday night a month. Being a kid we didn't really understand that however what we did see was how my dad interacted in public with the people he helped in the shelter. I remember being at McDoanlds once and my dad bringing food to a guy dressed in a winter coat in the summer carrying all of his belongings. My dad knew his name and talked to him. He taught us with this actions that this person was a person too. It wasn't a show my dad was doing but caring for someone he had a relationship with.
We like to Americanize giving. There is times and places for money... there is times when that I best... I am on a committee trying to build an accessible playground... right now we need a lot of money for that, but we also need hands to join in helping fund raise and we will need a lot of hands to help build it.
Joining along side often takes you out of being the hero. When this is just a part of your life an relationships its not a pat on the back thing for you. It is so easy to get caught up in doing things for others with a selfish motivation. Look how great I am and all the people I help but that puts you above others and the last thing people who need help need is people looking down on them.
So I think the challenge to all of us... how can we have a balance in our helping others. There are times that money is the best donation and is what is needed... but push yourself to not only serve at people but find places where you can join along side of people too.
But my head drew to how often that is the American way of helping. We see a problem... we don't look at the root cause of the problem and we try to solve the problem how works best for us.
We saw it this weekend with a golf trophy being dedicated to hurricane victims like that was going to solve the problem. We see it when people throw tax donation money at an organization. We see it when Americans go in to "fix" someplace. Too often we see it in American mission work.
And I am not saying that those things are all done with bad intentions (although on the topic of giving for tax brakes I feel there is some lack of purity there) What I am saying is we often look for an "easy" way for me to "fix" a problem.
One of the ways I have been evaluating this is my life lately is asking myself where I am joining along with people and where am I serving at people. Those are two different things and each one has its time and place but the joining along side with people often digs a lot deeper then serving at people.
Let me play this out for you:
Say you serve at a soup kitchen. You serve a meal. You do your duty and then leave. Someone was fed that needed to eat. That is not bad, but imagine if you invested more time into those people... imagine if you developed relationships... imagine if you mentored them and helped them thrive. Its more of a time commitment. Its more risk of getting hurt. But it helps move that person from just getting fed to thriving.
Its engaging with people. My dad taught me this by his actions when I was younger. My dad use to manage a traveling homeless shelter one Saturday night a month. Being a kid we didn't really understand that however what we did see was how my dad interacted in public with the people he helped in the shelter. I remember being at McDoanlds once and my dad bringing food to a guy dressed in a winter coat in the summer carrying all of his belongings. My dad knew his name and talked to him. He taught us with this actions that this person was a person too. It wasn't a show my dad was doing but caring for someone he had a relationship with.
We like to Americanize giving. There is times and places for money... there is times when that I best... I am on a committee trying to build an accessible playground... right now we need a lot of money for that, but we also need hands to join in helping fund raise and we will need a lot of hands to help build it.
Joining along side often takes you out of being the hero. When this is just a part of your life an relationships its not a pat on the back thing for you. It is so easy to get caught up in doing things for others with a selfish motivation. Look how great I am and all the people I help but that puts you above others and the last thing people who need help need is people looking down on them.
So I think the challenge to all of us... how can we have a balance in our helping others. There are times that money is the best donation and is what is needed... but push yourself to not only serve at people but find places where you can join along side of people too.
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| This is a picture of someone who truly gets loving with people! This is Ann from RMH and she is incharge of the amazing garden and she joins with families in supporting them! |
Monday, October 2, 2017
The investors
I was talking with someone yesterday and after the conversation I started thinking about the people who invest in my kids.
My parents went by the motto that it takes a village to raise a child and I had a village around me. There are people that I can think of while growing up that invested in me. People that even though I don't see them all the time now still mean a lot to me.
I was thinking yesterday about the people who invest in my girls and how grateful I am for them. No matter how "big" or "small" because it all makes an impact.
The people who stop to tell Jilli how cool her wheelchair is... those who take the time to learn the medical equipment and can jump right in to help... those who do things to help their emotional development... the people who travel to spend time with them... the places that invest in them and help them grow as people... the people who invest time in them.
So if you invest time in my kids... thank you. You make a difference. You make me smile. You make them smile. And we are so grateful. Thank you for joining us in our journey. You are noticed and we are thankful for you!
My parents went by the motto that it takes a village to raise a child and I had a village around me. There are people that I can think of while growing up that invested in me. People that even though I don't see them all the time now still mean a lot to me.
I was thinking yesterday about the people who invest in my girls and how grateful I am for them. No matter how "big" or "small" because it all makes an impact.
The people who stop to tell Jilli how cool her wheelchair is... those who take the time to learn the medical equipment and can jump right in to help... those who do things to help their emotional development... the people who travel to spend time with them... the places that invest in them and help them grow as people... the people who invest time in them.
So if you invest time in my kids... thank you. You make a difference. You make me smile. You make them smile. And we are so grateful. Thank you for joining us in our journey. You are noticed and we are thankful for you!
Sunday, October 1, 2017
I love you and I hate you... music videos from children's hospitals
Have you ever listened to a song so many times you don't know if you love it or hate it...
let me explain...
Jilli has a youtube playlist titled "Hospital Songs." It is 19 videos that play over and over in our lives. When in the hospital... getting blood drawn... feeling tired.. or worried... or anxious... these songs are requested.
I hear them but yet I don't when they are on. Sometimes we go weeks between hearing them and in other seasons they play all the time. They get us through hospital stays and scary tests. Lydia joins right in dancing to them.
These are not a random collection of songs. Each one was filmed in a children's hospital somewhere in the world. That is very comforting to Jilli.
Many of the videos share the same songs as these songs seam to be popular with hospitals making their over music video. Roar, Brave, Fight Song, Shake it Off, Stronger, Thats What makes you Beautiful. I think more artists need to make songs with those same themes... and I vote more hospitals should make music videos...
For me, sometimes I struggle to hold back tears while listening to those songs. They have been played in some of our darkest moments. Other times I am grateful for them... how happy they make Jilli and for them supporting her through hard things. In times when they keep her calm during a blood draw I am so thankful. Listening to Jilli sing them again after being sick sometimes is more then my eyes can hold back. Her music therapist knows her favorites and they sing them together.
I love these songs but yet some days they sting...
But they remind me that many things in our life are that way. Joy and pain are often connected in the tensions of life. We choose to look at our life with the lens of "how can we find joy in this?" and some days that is hard and takes some work, but there is joy... even in listening to the same song for the thousandth time.
let me explain...
Jilli has a youtube playlist titled "Hospital Songs." It is 19 videos that play over and over in our lives. When in the hospital... getting blood drawn... feeling tired.. or worried... or anxious... these songs are requested.
I hear them but yet I don't when they are on. Sometimes we go weeks between hearing them and in other seasons they play all the time. They get us through hospital stays and scary tests. Lydia joins right in dancing to them.
These are not a random collection of songs. Each one was filmed in a children's hospital somewhere in the world. That is very comforting to Jilli.
Many of the videos share the same songs as these songs seam to be popular with hospitals making their over music video. Roar, Brave, Fight Song, Shake it Off, Stronger, Thats What makes you Beautiful. I think more artists need to make songs with those same themes... and I vote more hospitals should make music videos...
For me, sometimes I struggle to hold back tears while listening to those songs. They have been played in some of our darkest moments. Other times I am grateful for them... how happy they make Jilli and for them supporting her through hard things. In times when they keep her calm during a blood draw I am so thankful. Listening to Jilli sing them again after being sick sometimes is more then my eyes can hold back. Her music therapist knows her favorites and they sing them together.
I love these songs but yet some days they sting...
But they remind me that many things in our life are that way. Joy and pain are often connected in the tensions of life. We choose to look at our life with the lens of "how can we find joy in this?" and some days that is hard and takes some work, but there is joy... even in listening to the same song for the thousandth time.
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| Jilli with her music therapist Melissa at Ronald McDoanld House |
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