Sunday, May 20, 2018

What if...

What if a diagnosis doesn't matter?

That question hit me like a ton of bricks tonight. I am reading "Love Lives Here" right now as well and "Love Does" and with the yucky weather today I curled up and flipped between the two books.

I read the line in "Love Lives Here" that said "We often find our safest and most beautiful places where lava once flowed." and I paused... and that question hit.

The topic for next month's Complex Child is on rare and undiagnosed (its not a secret its on their facebook page). When the author call when out I thought... hmmm, I should think about that... and then reminders came and facebook posts and each time I thought about it but did nothing. Today at lunch my mom asked if I was writing for next month's edition and I joked that its a topic I know so much about but couldn't think of something to write. This is odd for me, as often I have to do my own sorting though stuff before I submit things because I have too many ideas and need to narrow things down first... but for some reason I was stuck.

The question "what if a diagnosis doesn't matter" is a jarring question when you are in the mist of applying to NIH, and working with several doctors on figuring out a diagnosis...

When a lot of the last 5 years have been spent actively searching!

I remember this time 5 years ago. Jilli had an NJ tube. It was causing ear infections. She had croup. I knew in my heart we needed the GJ tube surgery but I was struggling with the idea of them cutting my baby open without them knowing why. I spent hours upon hours searching for the why. I still read a lot about stuff.... thats wise... however its not wise to let it consume.

There have been parts of this journey where all eyes were on finding a diagnosis. Where prayers and late nights were spent around that.

Today on my way home from church I listened to the Annie F Downs podcast with Jon Crist which you would think would be a super funny podcast and it was but it was also super deep and SO good and one of the things we often do in life is live for the next thing... once I get a boyfriend...once I'm engaged... once I'm married... once I have kids... we are always living for the next thing and putting all of our hopes and dreams in that... but thats not where our hopes should lye because while all of those are great things they will never fill you up. I use to a live for the next event person, but I have noticed in the last couple of years that I am less focused on next whatever and having a reason to be excited for today. (funny thing... for a girl who use to put her hopes in the next thing... our wedding anniversary is this week... and I totally forgot until my mom brought it up at lunch today... lol! Its not that I don't love my husband, I do, very much! however the next big event isn't what I am focused on... however I should plan something nice for him... we have been doing this life thing together for a while now lol)

So I just sat here after that question hit... not sure what to think.

I have always thought that someday we would have a diagnosis but that isn't promised. It might still be in the future.

So I sat here for a minute looking at nothing... what do you do with that question. I have been wrestling versions of that question for a while but for some reason today it felt like a ton of bricks.

What steps do you take in light of that question?

And the answer I came to... we do the same things we are currently doing. We believe most of our paperwork is at NIH at this point however there is still a box that I can't get NIH to tell me if they have and the post office says it is sitting in a distribution center. We are in the 8 week waiting period... and then a letter will come and it will say one way or another. There will be no arguing with the letter, it either says we are going to NIH or not. During this time there is nothing I can do to speed it along or help our chances...

But what I can do is prepare my heart. I can prepare for the letter... either way that letter is going to be intense emotionally. If we go there it will likely be very emotional.

I sat here as I pondered this question and thought "do we go still if we are invited" and I think yes, we still go even if it is not for us. Even if it doesn't help us at all, maybe it will help someone else. Maybe we get to help be a piece in someone's journey... someone we might never meet or know about but God is working pieces together. Maybe it will help us on our journey... I'm not ruling that out.

But God is preparing my mind and my heart for the next steps of this journey. I can't even begin to explain how different I feel about a diagnosis then I did 5 years ago. Sure I still think it might be helpful however my hat doesn't rest on it... and neither does my heart. I use to feel like I needed that name to prove to doctors that something really was going on, but I don't feel that anymore (if you spend time with either girl you know without much guessing that something medical is going on... I often joke that we are a walking billboard for disabilities lol).

God has this either way.

God has always had this.

God isn't limited by medicine or labels.

A diagnosis or lack of one doesn't surprise Him.

We don't need to justify things to Him.

Bob Goff often says that Jesus doesn't need a lawyer... but I think we also don't need to try to be our own attorney trying to justify ourselves to Him.

So what if a diagnosis doesn't matter... I guess in the grand scheme of creation a diagnosis isn't a turning point... so we keep focusing on eyes on the one who is.










    

Friday, May 18, 2018

Who I want to be...part of the story

An Amanda history lesson... some of you are newer to our story and I didn't just land as a late 20s mom with two kids... there is a lot that has shaped who I am.

High school me was involved in everything. Honestly thinking of high school year makes me tired! I ran at 1000mph and wanted a hand in everything and wanted to be of value in every situation.

By the time I went away to college I was worn out! I spent the summer between college and high school as a nanny and it was a slower pace at life then I had been living for years! Once I got to my second college (I did freshman year at a college near home to save money) I was ready for rest. I was more calculated in what I was involved in. I started to realize that I wanted depth. One of my good friends and I joke that neither of us excel at small talk.

I have always been a take charge person. Typically the head of whatever I was doing. And at times that was good, its a place I feel comfortable, there have been other times that I have been leading in positions where in hindsight a little more life experience could have helped some of the bumps.

This season in life has me at a different position and to be honest at times I have mourned the involved in everything me. There is an entire group of kids that I taught them in Sunday School and really invested in those kids and now I am someone who has been asked more then once if I was new at our church since having the girls... that stings because I had a place of influence, a place of value, and a place I could show for the things I was doing.

I always wanted to be the head of something... leading...

However as I am getting older I am seeing the beauty in being a part of the story.

Its not that I don't see value in leadership... I think leaders are still very important. I think it is very important who we let lead, especially if we put the label Christian on whatever is occurring. I am more interested in leaders who are worried about others then their glory... the ones that see the value in love. But at the same time sometimes as a society I think we only look to the leaders but forget about all the other people it takes to make the world work.

But I am becoming more comfortable in my skin of just being me today. And tomorrow taking the next step. I don't have some great plan or agenda and my dreams are less focused on specific things occurring and more about the heart...
-do the people around me know they are loved?
-am I actively helping the least of these with the eyes of love?
-am I treating people with dignity... even people who disagree with me?
-am I invested in people that have been placed in my life?

Being able to say that I am working on those things are my goals now.

And if somewhere along the way I end up doing those things and end up leading others to do the same thing then great... but thats not the goal.

Sure sometime I read things and wish I could be a part of all good things, but I've been called to the good things that I am doing and helping where I can, but I can always be looking for ways to love people, but that doesn't mean my name has to be listed as the head of a non for profit.


For now I am thankful that I am able to take calls from friends when they have feeding pump questions, or are worried about life. I am thankful I can play with baby dolls with Lydia. I am thankful I can teach Jilli how to think about math. I am thankful I have time to talk to Brent about life. Sometimes having time for those things means having less of a laid out plan for the next many year and more about looking at today and looking to see what love can look like today.

I want to be who Jesus called me to be today

Lydia playing with her dolls today

Thursday, May 17, 2018

clicking

If you knew Jilli well when she was little she would click her tongue frequently. But then for some reason she would loose that skill, we didn't understand her crashes back then, she would just loose skills randomly but when a baby looses skills its less drastic then when a 5 year old looses skills. We were always confused by the backsides but one of the illusive skills we all joked about was Jilli's clicking. It became infamous with our friends. When she would start doing it again after stopping for a while she would get so excited and would try to teach us how to do it too and when we made the sound she would clap for us.

Tonight out of no where she remembered how she use to click all the time and got all excited and taught Lydia. It was so cute! Lydia was so excited to learn something from her big sister! It made me laugh and think of little Jilli, different thing and people in our life during her clicking days, and all the ups and downs in the road.

Friday-Tuesday Brent probably asked me 100 times if I was ok. If you saw me in public I was faking a smile. But I didn't know why I felt so off... I don't necessarily have a word for my emotions but the people closest to me could read me and knew something wasn't right.

Jilli has been hanging on the edge of the cliff since April 28. She will have good times, where she is happy and has energy and interacting with life... but her vitals signs have not been great, I have found her curled up resting more then normal, therapy has been harder, she has struggled with behavior in ways she does when her body doesn't feel good... we have all been gripped to the edge for days on end.

Tuesday night I had a meeting and since non of my normal podcasts were updating in my phone I decided to listen to another episode of Fun Therapy... I am not sure why they call it fun... I have listened to 2 episodes and both have made me cry and I am not even the one doing therapy!!! I decided I would see if anyone I knew was on and Maria Goff was on an older episode and I had just finished her husband's book Everybody, Always (stop and go buy it... now) and he talks about her in the book so I figured it might me interesting listening to her.

As the episode went on and she talks about some of the darkness in her past that we share some similar cobwebs in she started talking about the sympathetic nervousness... now I have a degree in early childhood education, I have taken many psychology classes, I know all about flight or fight but as she was talking about it I understood why I felt so yucky...

My body had been in fight for days but for nothing to actually fight. She was on the edge but had not fallen off and on the edge there is nothing we can do but wait. We keep doing what we normally do because our team advises that is best and take breaks when she needs and we do things like the butterfly harness on her wheelchair but we keep chugging all... but I just kept waiting for the fall... my body had gone into fight before there was any need for hospital advocating and working hard to get her back to baseline. My body was worn out!

But naming it was so helpful! I got home and Brent and I talked about the podcast and how I had been feeling. We had a good conversation.

By the next morning I felt different. I felt less on edge. I felt like I was calmer when talking. I felt the joy within me that I normally feel. Brent said I looked like me again.

So tonight when Jilli started clicking I got sentimental and laughed a little. I am not sure why her clicking is a sign of normal at our house but it is lol!



We have also had a good few days! Yesterday the girls had therapy and Jaime, Jason and the boys came over. In Lydia's world Emerson and Oliver rank very high on her people order and her face lit up having them here to play with. This morning the girls and I ran to the Matel Store as the one by us is closing and prices have gotten really good! We went there with one main thing in mind... a Smart Cycle! We saw it the last time we were there and Jilli really wanted it but it was more then I could rationalize spending without Brent and I talking and planning but they marked it down more! I talked with Jilli's therapists and they thought that it would be very helpful for Jilli to work on her muscles inside when it is hot or cold out. I am very thankful for Brent's parents for getting it for her and she is very excited! She went on it for a while this afternoon and had so much fun! She battles muscle atrophy so helpfully this is something that will help with that. We then had to run to Target and get more allergy meds for the girls as it is spring and Lydia's nose would be happy to remind you of that so they upped her med for now to help her through but that meant we ran out of meds... thankfully we can buy extra Zyrtec! Yes I have seen all the Mickey stuff at Target... yes it is very hard to be wise lol but I did let Jilli get the Mickey nail polish and I painted her nails. Brent is at church tonight working on stuff and the girls and I are hanging out. Lydia is doing a puzzle which is one of her favorite toys... she has also been playing with her dolls all day... the girl and her dolls!

In health world there isn't too much going on... I am trying really hard to be patient about NIH but there isn't much I can do about that... we just have to wait for the letter and whatever the letter says we have to be ok with. Insurance denied the battery for Jilli's portable oxygen but we figured they would and we have a different funding source from a waver but we needed the denial first so having the denial is actually a step forward. VNA sent a pre auth for Jilli's IV pole... yup now we are playing the game with two kids... I called a few days ago and they are not calling me back. We have had this IV pole for 5 years... it was paid off in one payment... no one needs to pay them anything for a pole! I found the IRS paperwork I had put in a safe place and then forgot the safe place but I got the name change stuff filled out because for respite for Jilli the IRS spelled her name wrong... fun! But at least that is done!

Jilli on the Smart Cycle



The kiddos!

Friday, May 11, 2018

Book Fair!

Last night Holly, my mom, the girls and I attended a book fair warehouse sale with amazing prices that is open to teachers and homeschool parents. I use to go yearly when I taught in a school but have not gone in a few years but now that we are homeschooling Jilli we figured it was a good time to go!

We found some amazing books and I figured I would share some of my favorites because I know we are always looking at good children's books and I know several of my friends are as well!

This is a easy reader in graphic novel format that is really funny. Jilli has a goal of reading one of the Super Girl High graphic novels at Target so this book is a good step at teaching how to read graphic novels.

This is a good book with a message of liking yourself no matter what you look like

We read this book together this morning and I LOVE it. It talks about following your dreams and doing things that make you, you!

This is a cute book that talks about how you should always work to make good choices but if you mess up that your parents and God still love you

We have a lot of Boo Boos in our house and this book is really cute about Boo Boos and how its ok

Lydia has become very into Peppa lately and we are working on colors because she calls all of her colors by the names of the Sesame Street character that is that character (elmo= red, cookie monster=blue)

This is a chapter graphic novel that I will read to Jilli but it has a character in it who uses oxygen and a feeding pump so she has been asking for this book for a while

Lydia loves anything Elmo and a book about processing through boo-boos is always a hit at our house

I love pout-pout fish so Jilli was excited to find an easy reader Pout Pout

This years American Girl of the year dreams about space and so does Jilli so this is a good chapter book for Brent to read to her

Lydia chose this book.

This books is SO cool! It talks about the brave women in the Bible and has the Story of Lydia (who my Lydia is named after)

We have the Peppa set like this and really enjoy it and Jilli likes Star Wars

This is a Jilli goal book. While it might say its a number 1 it is still a little tricky

Books for Jilli to read to Brent

Jilli is starting to work on telling time and she loves Peppa so we figured this was a win win book

This is for my bed protesting Lydia

A book about compromising and playing together!

A book about kindness AND many of the pictures includes a child who uses a wheelchair which is a big deal at our house

A book of gardening science experiments

We use the Skip Hop backpacks to hold the girls feeding pumps so they thought it was so cool to have a book all about their backpacks

I feel like many of the leveled books are rather arbitrary, however this book I would label as a true level 1 which made Jilli excited!

Wednesday, May 9, 2018

Big girl car seat

As of last night Lydia officially has a big girl convertible car seat! She is still tiny at 19lb so she has still fit in her infant seat but she is starting to grow a tiny bit length wise so we needed to plan ahead!

I went yesterday and grabbed Jilli's old convertible car seat which has a lover rear facing height limit then her current one as we were planning on using it for Lydia since she is a ways from the height limit. I had read online that getting the Evenflo seat installed correctly in my Senna (we used this car seat in the Oddysey) was hard and they were not joking. I have installed a lot of car seats over the years between baby sitting and such that I've gotten pretty good at it but no matter what I did I could not get a safe install because of the angle of the seats in the Senna. That seat might work forward facing however we do extended rear facing at our house and Jilli is still very comfortably rear facing so turning Lydia around isn't happening any time soon.

So thankfully Brent works right by a Toys R Us that is going out and they marked all their car seats 30% off yesterday so he popped in and picked up a second Chicco Nextfit. Jilli has had a Nexfit for a while and we really like it! Its easy to use, clean and install. Jilli had a different infant seat then Lydia and for Jilli's I cried once when Brent took the base out because the base was such a pain to get in, but that is not a problem at all with the Nextfit. The latch system is so easy on it! Its not as easy to install as Lydia's infant base but I'm not sure any convertible seat on the market is!

So we are now the owners of two Nextfit seats! The girls are excited because the one Brent got yesterday is purple sparkles because thats the color they had!


My tops pics for seats we have used:

Infant:
Uppababy Mesa: It is SO easy to install that base. I have installed it in multiple cars and it goes in like a dream and shows you with an indicator if it is in right and leveled correctly. I never have questions if it is in all the way. The seat itself is nice and has some nice features. For every day use car seats I love non rethread harnesses, it just makes it easier to get the right fit, especially with kids who have muscle tone to sit up all the way some days but then slump really badly from low muscle tone other days. The only downside with this car seat other then its price tag is its limited stroller compatibility. We bought it when Baby Jogger still made adapters for their stroller with it however they have discontinued those. The UppaBaby customer service is also amazing too. The belt buckle accidentally got washed one day and they overnighted us a new one. The cover is also very easy to remove. We have been using this seat for 23mo now

Convertible:
Chicco Nextfit: It is easy to install.  It has been easy to clean, my kids don't eat "food" in their car seats so I don't have that mess to clean but we have had bathroom spills on it. It is super easy to adjust the height. With its rear facing limits Jilli (who is small for her age) has been able to stay rear facing til almost 5 and a half.





Tuesday, May 8, 2018

Maybe disabilities make me a differently engaged mom

Last week we were at the playground. We had run to Milwaukee to get my TB test read (all good... wasn't worried lol) but since its an hour drive there we decided to do more then just have them look at my arm for a couple seconds. Brent met the girls and I and we got lunch together and the kids and I hit up Toys R Us to shop the deals (that worked out well for Lydi's birthday shopping!) and then we decided to stop at the accessible playground that is nearby.

By this point in the day I was tired! The girls had just sat in the car, cart and wheelchair all day so they were well rested but I had run all over. There was a mom sitting on the sides looking at a book and boy was I jealous of her! For us just letting the girls play free at the park is not an option, even at a wheelchair park. Ramps are steep, you can't push the merry go round while in a wheelchair, and someone needs to carry Lydia's oxygen... the park is a full work out for me. If we go to a non wheelchair park (which most by our house are) we have to have two adults because neither girl can carry their own oxygen around at a park... there is nothing restful about the park in my eyes.

However we go to parks because its good for the kids. Its good for their social development. Its good for their bodies to get out and moving. Its good for their lungs to get fresh air and sometimes that makes their lungs get a bigger breath in which they both struggle doing.

So I was a little grumbly inside my head for a minute looking at the mom sitting on the sides (I'm not judging her at all! I wanted to join her) but then I stopped...

What if the girls disabilities make me more engaged?

Thats not a question I had really thought about before.

But parenting two kids with special needs changed how I parent (my idea of my parenting pre kids vs reality... I don't know what it is like to parent kids without disabilities so this is all theory).

Before kids my thought was kids sleeping in their own rooms and going to bed on their own at night... both kids sleep in our room still and you have to hold Lydia until she falls asleep or she tried to do some serous self harm but disconnecting her tube and oxygen.  Neither of my kids sleep great either, Jilli gave up naps at a little over 2 and Lydia is not napping at least one day a week at this point so I have a lot more awake hours with them.

Both girls still sit in the cart at the store so I get time to talk with them while a typical 5 year old would be out of the cart.

Before kids my plan was to teach and now I am homeschooling. Now their education rests on my shoulders and that has weight to it and makes me seek out making everyday things educational.

Before kids I figured so many things, and actually having kids changes you. It changes your views on things because of your individual kids.
  

But as I was tired and wanting to sit on a park bench my mind drifted to thankfulness for the extra time I do get to spend with my kids. Lydia is almost 2 and Brent or I still get to hold her as she falls asleep most nights (which the melatonin is helping a lot!). We make it more of a point then I think we otherwise would have to do experiences with out kids because their time is a treasure.

I've held little hands in the hospital for hours on end and while I don't wish for them to need to be there or having those tests done, we do get a lot of one on one time there.

So maybe a good side effect of disability is more engagement with my kids then I might have had otherwise and I'll take extra time with my kids as a plus!


Sunday, May 6, 2018

What I've been learning

I posted on Facebook the other night how Brent and I both feel like we are in a season of wait and preparing... but waiting and preparing for what we don't know. This is a scary yet exciting place to be. There is a part of me that feels like 6mo from now some things might look different... but I don't know what things might look different... I know this sounds crazy... I'm writing it so in 6mo from now when something is different I remember this. It might be big, it might be small... I don't know.

I feel like I have been on a multi year journey at looking at American culture and examining the things that are biblical and culture. I feel like in this country those often get confused. That is one of the problems of living in a "Christian society." I have looked at a lot of normal phrases... sayings I have heard all my life that suddenly stick out. One I realized I had let live in my heart and mind that I shouldn't have was "never pray for patience because God always teaches it to you the hard way." I don't believe God delights in us learning things the hard way... I most definitely do not agree with the Jonathan Edwards view of God dangling us like spiders... infact I would agree with the Brian Zahn view that it is one of the more dangerous sermons considering its historical significance. However I had let that view into my heart and it was massively effecting my prayer life because it shifted to not just praying for patience but that if I prayed for anything God was going to teach me the hard way. As a mom I never delight in my kids learning the hard way... that doesn't mean that they don't learn the hard way sometimes and it doesn't mean that I always prevent them from learning something the hard way after the easier way has been offered to them repeatedly... but I don't celebrate when my kid falls off the side of the chair when I have told them repeatedly not to climb on it like that... I still scoop them up in my arms as they cry. But this view of God teaching things the hard way filled my brain. It came as a road block when I went to pray. It was a stumbling block to my heart.

Over the past few months I have taken up reading. I have never been a huge reader. Its not really ever been my thing. Reading to me in school didn't come easy and unless it is a picture book I still have scars about reading in public. My past held a view over reading... but it all started with picking up Never Say No... which led to Wholly Jesus... which led to Sinners in the Hands of a Loving God... which led to A Farewell to Mars... which led to A Faith of Our Own... which led to Everyone, Always.... if you told me in January that I would have read this many books at this point in the year I would have laughed at you. But I see how these books have chipped at my heart. Then a couple of nights ago I was reading a blog post I wrote a few weeks back... "I am thankful that God blessed me to be their mom and I don't take that lightly. I am thankful that God granted me the longing of my heart." and it hit... I went to go highlight it like I do when I am in iBooks and then I realized I wrote those words lol! I then went searching the Bible and found Psalm 37:4 and it was like chains were freed. It hit me that God puts desires on our hearts for a reason and He doesn't delight in torturing us with them... He doesn't put them there to be mean, just like He doesn't give us things to pray for just so that He can teach it to us the hard way.

That night I went out and got canvas. I love to paint... I am not very good at it but it is very relaxing to me. We have several things I have painted around the house and each one of them have a meaning. There are some that the things going on in my life were very painful and the paintings are tucked away more (I painted on right after one of my students died, I can't look at that daily, its up in the spare room) and others are in times that were harder but have become beautiful... the most prominent painting in our house is of a tree. There is no leaves and there are lots of imperfections but I painted it as I prayed for my future children as we struggled getting pregnant. The tree hangs right behind our couch and it reminds me of the longing fulfilled. The other night I painted Psalm 37:4 (amplified translation) onto canvas as a reminder of what God has taught me over the last few months and the freeing of those chains. It doesn't mean that I no longer struggle with those thoughts creeping in... but I have the knowledge of the Word to stand on as a reminder that God delights in loving me.

As I was thinking about this today I was thinking about how that flows out into actions. Lydia has hit the age where she wants to be on the iPad all the time... in her perfect world the TV and the iPAd are both going to what she wants at the same time... however that is not good for her nor is it wise. I have been busy lately with LOTS of medical paperwork and sometimes it feels easier to just not fight her on things... she is a strong willed child who doesn't let things go easily. She was mad at me tonight about how I wouldn't let her have technology because she played iPad at church this morning and Jilli was mad at me because I was making her clean her play area... for a few seconds there I just wanted to give in to them both, sit down and zone out on facebook but then I paused and thought about it... I want to raise girls who have an impact on the world and there are life skills they need to know to do that... getting everything they want isn't going to get them there, doing everything for them isn't going to get them there, letting them cost though life just because they feel tired isn't going to get them there... so I stopped, I explained to Lydia that I was not getting her technology, and I handed her a baby doll... I then walked into Jilli's play area where she sat feeling overwhelmed by the mess and helped her come up with a plan of how we could work together to get the mess taken care of (she worked on cleaning the Barbies that were on the floor while sitting next to the bucket instead of walking around the play area). The easy thing in the here and now would to have let them both do what they wished... but in the long term that wouldn't have helped them. I see how often short term things feel so much better in the hear and now but in the long term they are not good. Jilli and I were talking about that today with her being tired and not wanting to clean. She said she had enough energy to sit on the couch but not enough to sit on the floor and clean 😏but we talked about how her muscles start out every day atrophied (thats what her muscle biopsy showed) and that it makes her want to rest more, but the worst thing for an atrophied muscle is to rest it all the time... running a marathon with an atrophied muscle is stupid but laying on the couch most of the time with one is equally not wise. We talked about how proud I was of her at the fashion show where her body was tired so she rested some until her turn but then she rocked it during her turn... that she did a good job of balance. She also did a good job of balance today when she asked to ride in the stroller at church instead of her wheelchair because her body was tired from all we did yesterday but she also worked hard at zoo class and the park yesterday. Yesterday she showed to me again how good she is getting at using her wheelchair while going down the ramps. When we got her wheelchair there was a bit of debate of if we should go with an electric or a manual with smart drive and her neuromuscular doctor said it was kind of a toss up but he would rather see her go with the manual for now to not give up on building every bit of strength we can but to have the smart drive as an option too. For things like the park we don't use the smart drive, there are too many kids running around. I will admit after she got the wheelchair there have been times I wondered if we made the right choice... the smart drive has not been as easy as I would have liked and a manual takes work to use, but I was so proud of her hard work yesterday and was thankful for our choice to try to foster all she can do. Life with the girls is a balance of putting just the right amount of supports in place but not putting too many in because too many could be dangerous.
I want to have these conversations with her now because as a person with several rare disorders I get how much bodies can feel yucky but how learning balance is a key and I want to pass that on because learning that for her is going to be a key to being a person of influence because while social media has its advantages there is so much to life outside of that world and I want her impact of loving others to stretch far beyond a computer screen. But the conversation reminded me that I don't ever set out to have Jilli work on things to be mean to her... we work on her stamina because I love her and I know she will never be able to be a Doctor and nurse on Tuesdays, Teacher on Wednesdays, Astronaut on Thursday, RMH manager on Saturdays and a art and music therapist on Sundays (yes that is Jillian's real carrier goals lol, and she talks about her plans for schooling of how she is going to make it happen... she better start applying for scholarships now!). Whenever I ask her to do something all the way or work hard at something it is because I love her deeply and know that sitting all the time isn't going to get her to her dreams. It reminded me that I believe our heavenly father loves me so much more then I can ever love Jillian so if something feels hard it might me that He is making me work though something because He loves me enough to not want me to half do something, he delights in restoration and growth in Him. I know sometimes I learn stuff the hard way because despite warnings I choose the hard way, but God doesn't delight in that, just like I didn't delight tonight in Lydia learning over and over that if you get the oxygen tube stuck in the doll stroller wheel you can't move. I can look back at life and be thankful for the lessons I have learned and even though I sometimes am scared to learn new lessons (that didn't go away overnight) I am thankful that I have my faith in Him and that He loves me and wants the best for me and has put desires on my heart out of love.
Something I have heard Jon Foreman say multiple times in interviews is that is is a lot easier to believe that there is a God then that God loves you and I feel like what I have been learning recently really speaks to that. I believed that whole time that God existed... however that is different then knowing that He loves me and puts the desires on my heart for a reason. I remember in the early days when Jilli was little that I felt like I had often justify that there were medical needs going on and I longed for a diagnosis so that it was easier to explain to people and to feel justified but somewhere along the line my thinking switch to not needing justification and to knowing that the best thing for her was to do what we could in the here and now... that if we figured out a diagnosis but it did nothing to help her more and was only just a name on a piece of paper then it was just that... words on a page while we didn't help the here and now... so I joke now that we play whack a mole with symptoms now but the reality is that maybe that helps the girls more then some words on paper... If I spent all my time searching for an overarching diagnosis but didn't give them their meds today I would be failing them, even on days like this week when Jilli's tummy hurt with meds, but I would be failing her if I didn't give her all the meds her body needs... its like knowing there is a God... but not understanding He delights in me... then I reduce God to just a word on paper but I am effectively treating the needs.

So life has been a bit of a journey lately... but in reality it always should be.

My painting

I am so thankful for all the hours we have worked to help her learn her wheelchair... all the tears in Target and therapy as she said it was too hard... to see her smile on her face yesterday while she was on this swing.