Grateful

I was laying in bed last night after a really long day thinking about how grateful I was.

When I was 17mo old my dad got me a doll for Christmas. He went out and picked it out himself at ToyRUs (😭) and gave it to me for Christmas (he has also bought each of my girls a special doll, that is who Lydia's Bitty Baby came from). It was my top Christmas gift that year and I tried ripping it out of the packaging. I slept with that doll through high school (no shame in that). The doll's name is Stuckhead because thats what toddler me named her. I remember middle school and high school me looking at my doll and longing one day to be a mom (seriously prayed about being a mom and for my future children while in high school). I once did a horrible devotional (with a name along the lines of the hardest x amount of days, looking back I know I was wanting to grow spiritually but this book was probably an unwise choice) that was about not having anything before God, which is a good idea however its practice it had some issues and assumed that everyone has the same roadblocks to that happening. One of the days what to get rid of your childhood security object... I cried, my parent stepped in and took the devotional because the saw the book was actually creating a much larger roadblock for me then my doll ever had. I still have my doll today, she is in the guest bedroom in my wooden doll cradle. I don't look at her often anymore, but she still makes me smile.

As I laid in bed last night Lydia was curled up next to me. Her body is still fighting from the pneumonia and ear infection, although she is getting better each day. I put my arm around her like I did for so many years with my doll and was so thankful. God has always known the longing on my heart to be a mom, He made me, and in that moment I was so thankful to Him for the blessing of getting to be a mom.

The past few days have not been easy between the ER, having a sick kid at home, a second kid looking for attention too and in the mix of redoing our front entry way, life has been crazy and by last night I was worn. Lydi's tummy was bugging her from the meds and she couldn't get comfortable and I just wanted to sleep but as I put my arm around her my heart refocused.

Despite every challenge I am still thankful to be Jillian and Lydia's mom. 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. I am thankful for two of the most wonderful girls!

Today on the drive to therapy I listened to The Faith Angle about being grateful despite all that is happening in the world and how that changes our world view. It was a great reminder to the value of a grateful heart.

So today I am grateful. I'm grateful for my kids.I am grateful that the meds are helping Lydia. I am grateful that enough of our medical records came in for me to send them out to NIH. I am grateful for our oxygen delivery driver who despite hitting a tree with his first truck today still came to our house in the sleet (it looked like dippin dots were falling from the sky) to deliver oxygen to the girls. I am thankful for our therapists who worked hard with the girls. I am thankful for the community around us that walk with us in life.

Im grateful for the 3 hour nap Lydia just took while not on me because I was able to get SO much done (this is very very rare!). I was able to finish the application to try to get Jilli and adaptive bike and work on some stuff for NIH and blog, all things that went much faster while Lydia napped! 

Me opening Stuckhead

Me and Stuckhead after my ear tube surgery. I don't remember this however this photo is in my photo album from my childhood which my parents kept in our living room so I looked at it often as a child. This photo influenced my choosing to volunteer with Tubie Friends because my parents talk about how much it meant to me to have Stuckhead dressed in hospital clothes and for her to go back into surgery with me and I want to give that joy to other kids

Little me and Stuckhead (I was about 3yr old here)

Lydia is not loving nebs!

I love those smiles

Lydia last night when she couldn't get comfy

Good Cry

I just had a good cry.

My facebook "on this day" popped up with a picture of Jaime, Emerson, Jillian and myself after Emerson's baby dedication. Lydia was the large bump in my abdomen. That picture made me smile so I clicked open the "on this day" and there sat the pictures from last year at this time... Jilli in the hospital, very sick. I started to cry. I'm not much of a cryer. This was ugly tears cry. I don't know why that hit me like it did... maybe the last few days had something to do with it...

Last week I went to the dentist because at my teeth cleaning they looked at the crown they put on a few months ago and said it wasn't sitting right and that if I got it fixed now that its covered under warranty but if I waited and it broke it wouldn't be. Have I mentioned before how much I HATE this tooth?! So I agreed to doing it now. I went in last Monday and they drilled the old crown off and took the impression for the new one. In the process part of my tooth broke, it was a long afternoon where I spent almost 2 hours at the dentist with both kids. Tuesday I got a call, when the mold went to the crown making place there was an issue so they needed me to come back in and take the temporary crown back off and remold it again so I did that on Thursday (and my mouth has hurt enough I have had to take something for the pain most days since and if you know me you you how I fight taking any pain meds, including over the counter, but I have had to take Alive the past few days). When the kids and I got home on Thursday our plan was to run to Target and then meet Brent in Burlington to play at the park and get ice cream before the snow storm, but we got home and Lydia felt warm. Both of my girls and I have a normal temp around 97.4 so its rare that we rise enough to be in the fever rank... well Lydia was at a 99.5. She was cuddly but didn't have any other symptoms so we decided to just stay home and watch her but let her body fight (we didn't give her any meds for the temp). Friday she was fine all day. Saturday Jilli had zoo class, then we dropped off donations at rmh and then we headed over to Smiths to hear all about Nate's wish trip and for dinner. We drove home in the slush storm and there was a car rolled over by our house but thankfully we made it home safe. Sunday morning Brent got up and headed to church but it took him close to a half hour to get the ice off his car. When I got up it was freezing rain and I made the choice to stay home which given the amount of reports online about issues with cars between me and church I think I made the right choice. The kids and I had a calm day watching movies and playing. Brent came home and we started working on our latest house project, redoing our entry way so you don't trip over medical supplies and shoes as you walk into our house. We are still majorly mid project with this (the walls got painted, but everything that once was in the closet is in our front entry right now and all of our cleaning supplies are across our kitchen).
Sunday night into Monday Lydia was restless in her sleep. She had a slight cough but nothing remarkable. Brent works from home on Monday mornings so he was still here when Lydia woke up burning hot... 102.5! Yikes thats high for her! I put the pulse ox on and her pulse rate was over 200! I called our ped office and asked the nurse what hospital they wanted me to take her to and she said to try my best given the roads to get to chw so I called the special needs oncall line and and left a message that we were headed to the ER, gave Lydia meds for the fever and got in the car. Thankfully Brent was able to work from home so he stayed with Jilli.
Thankfully the roads were not too bad and we made it up to chw. There was a line but someone recognized us and took us to a room. She still had a fever despite the med and was tachycardic. The fellow came in and look and said that Lydia's ear was infected but that they were also going to look into things. The attending came in and listened to her and we talked and came up with a plan. They cathed her for a urine culture (came back clean), drew labs (off but white bloodcell count fine), started an IV and ran a bunch of fluids, and did a chest x-ray. The chest x-ray showed the start of pnemonia. If I needed to bet I would guess its from last week when we were driving home and she opened her med port and sucked formula out of her tube as she laughed at me. Just that amount (I pulled off the interstate and closed her tube) is enough for it to end up in her lungs. Sometimes I start to second guess myself if we are making all of the right medical choices for the kids and then things like this happen and I am reminded how little it takes for things to go south quickly. They also checked out Lydia's butt because she was on flagyl for 10 days (ended last wednesday) for a bacterial overgrowth (she gets those every few months) and last Wednesday she ended up pooping bile and it ate her poor little butt and the skin opened up and bleed. They looked at that and said her butt looks ok and to keep doing what we are doing.
Lydia was so good in the ER. Nothing they did was fun but she was a trooper. She asked a few times if Jilli had done something before and when I told her yes she would calm down. It was like she knew if her Jilli has done it then she could too. 
They prescribed an antibiotic and sent us home (she got IV fluids for 4 hours).
Last night Lydia and I hung out on the couch watching youtube for hours (same thing we did in the ER) and then we gave both girls baths. While Brent gave Lydia a bath Jillian and I talked about aspiration pnemonia. Its been a long time since Jilli aspirated because she is old enough to not put things in her mouth anymore but when she was younger she aspirated a lot. Jilli often tells people she doesn't eat because she is allergic to food, which she is allergic to at least dairy, but that isn't the true reason, she doesn't eat orally because she aspirates and has gastic motility issues from her mouth to her rectum.
Lydia is doing alright if we alternate fever meds and do nebs every 4 hours plus she is on 10 days of antibiotics. She is playing a little today and watching a lot of hospital songs.

So today seeing that facebook reminder of a year ago and yesterday still being very fresh in my head my heart cried. I took a moment to feel (I can't honestly tell you an emotion I was feeling, it wasn't sadness or anger... it was just tears) and then dove back into being a mom. I finished reading the book A Faith of our Own this morning (very good, I wish I could hand copies out to everyone, it spoke to a lot of what my mind and heart have been feeling, I can't say enough good things about it, just go read it!) and have taken a slow day around here. I might go make myself a second cup of coffee and soon will snuggle with Lydia for her nap.

I also got to deal more with the IV pole saga... I thought that was over but last night we got a letter from our insurance company saying that VNA asked for a preauth for an IV pole for Lydia. I about flew through the rough! If you don't know what I am referring to, VNA keeps charging $58 a month for an IV pole that Lydia has had since July of 2016, the same pole, we have never given it back nor have they brought us another one. The pole costs $34 from the catalog. Our insurance paid $43 a month for 6 months before a bill mistakenly came to me instead of them and then I figured out what they were doing and flipped... they were paid most then the price of the pole month one, there is no reason they should be getting paid monthly for this pole. Then last April we switched insurance and they started charging this new company for the pole despite our former company having paid for it many times over. I argued and fought but they said it was in their right to charge the new company for it since we were renting it. I called there today and asked why they asked for a preauth for this (which our dumb insurance company that denies stuff all the time approved to pay for the IV pole they have already bought many times over!!!) and our person at VNA isn't sure why billing sent for the preauth so she was going to look into it. This is fraud!!!

Life pauses

We don't spend a lot of time talking about the past of the future at our house... there is always a lot going on in the here and now.

April 14th last year was one of the hardest days of my life and one of the scariest. I fought hard that night as I watched my child become unresponsive in my arms. I pleaded with doctors at 2am that they couldn't give up on her, that we were not going to just give up. And a year later I know I was right.

Those images are still there. All the events of that week are still fresh in my head a year later. There are moments in this journey where I think back and I can still feel the emotion.... so is hard... others is tears of joy.

Every once and a while we have little moments where life catches up to us. Most of the time we don't dwell in the hard.  Our house is a very happy place. As I write this I can hear Brent and the girls playing xbox together and giggles.

Tonight Brent has a life pause moment. Jilli came over while I was eating dinner and asked me to teach her how to read another book. This girl LOVES to read! I love that her learning is self motivated (that doesn't mean as a homeschool mom that I don't get eye rolls at times). After I worked with her on the book she went over by Brent to read to him.

A few minutes later the girls were coloring and I looked over at Brent and he had a sad look on his face. I have known Brent since 2003 and we have been together continuously since 2005 (we dated for a month in 2004 lol) so I know that look at this point. I walked over and gave him a hug and asked him what was wrong. We had discussed a few different things at dinner, politics, other friendships and family ect so I asked him if any of that was what was wrong (I mean, Brent likes politics but not enough to look like that lol)

He said "For a while there I was unsure if we would get to the point where she would have the opportunity to know how to read." There is some heavy weight for you! A little less then a year ago I had to tell him they thought she would never speak again. Milestones like reading are not taken lightly at our house... they are big stinkin deals! Its a celebration!

We gave each other a hug, had a few tears and then went on with the night of taking care of the kids. I am so thankful for the fact that we made the choice together to rely on each other on this journey... that doesn't mean it has always been easy, marriage isn't a fairy tale, but I am thankful we have each other to turn to. I am thankful he is mine and he loves the girls and I so much. I;m thankful that he and I can have deep conversations about life.

I often see how dads of kids with special needs don't get the same support mom's do. There are not tons of facebook groups for dads of special needs kids. The community isn't the same for them and sometimes I morn for him about that, I have these amazing women around me that I talk to all the time, but guys are different. But I am thankful that he and I have each other to turn to.

I am also thankful that Brent and I are able to have our moments, but those don't consume us.  We can take a pause, be sad and grateful... and then go on with life. We can join back in the the giggles. We can play a game with the girl.

I feel like I have been learning a lot about balance lately. We are such a black and white... good and bad... all or nothing society that balance isn't really our thing. We swing the pendulum from one end to the other... balance isn't really the American way, but I feel like I have been learning the importance of balance. Its ok to be overwhelmed by something... just don't live in that place. Its ok to feel, just don't live in the extremes, you are not always going to be happy and you are just going to be depressed if you think you are going to be happy.

So there is my rambles tonight on life here. Sometimes life just hits and thats ok. Tonight I'm thankful for the giggles. I'm thankful for my amazing husband. And I'm thankful I can hug my girls tonight.

My silly girls coloring the Tsum Tsum coloring book

Lydia and her baby dolls!

Jilli "helping" Brent the other day at church. Our church is redoing a room and Brent has been working on the sound and lighting stuff for it. I love his heart in serving. It has been amazing watching his faith grow since we met to the man I am able to have theological conversations with and we are able to push and grow each others faith.

Last night we had Jaime and Jason and the boys over. We all had a lot of fun! 

I posted a blog post yesterday of a facebook post about a podcast I am listening to. You can click HERE to read that blog post. I HIGHLY recommend this podcast! It reminds me that I am luck to get to work on reading with my kids, that is not something all parents are able to do for a wide variety of reasons. As the images of Syria flash again and I listed to an episode on refuges today I am reminded of the gifts I have and it breaks my heart even more to love others... sometimes that is money to help and other times that is stepping up someplace and saying I can help.

Facebook post

Ever have those things in life where one thing leads to the next... I listened to a podcast Jon Foreman was on a couple months ago, which started me listening to the podcast the interview was on (I know I'm really late to the podcast world for a millennial) which then lead me to listening to the New Activist podcast.
If you know me well there is always a bit of activist bubbling up in me, and while it has looked very different in different points of my life it's there.
As I drove to the dentist today tears rolled down my face and then as I drove home more tears rolled down my numb cheeks. The picture below is the two podcasts I listened to today.
The first one is a woman who bought a one way ticket to Africa and what has come of her life since. A few weeks ago Brent and I were in the car and I told him I was having my version of a midlife crisis. I'm a planner. We are homeschooling our kids but then what?! What am I going to do with my life after that? Do I want to go back into education?! I know that's a long way away but it was freaking me out more off of perceived society pressures then anything else. Brent looked at me and said he has told people that someday he might be the one stateside making money while I go around the world doing something to help and love people. Man he knows me. I laughed. He might be very right. Or maybe I'll be doing something in the country... there is lots of years and life between that time. I do love that my husband knows me enough that none of that freaks him out. But God has been reminding me lately that I can be love in the situations I'm in right now. That I don't need to start a big organization and I don't need to be a star in the spotlight... my job is to love and while it looks different then ways I once expected it doesn't make it less valuable work. Honestly this stage of life that I'm in right now, getting to love the people I get to love and be involved in the communities I am fills me up so much. I don't wish time away or live for the next big thing anymore, but am happy in the here and now.
The second podcast rocked me. This isn't the views of that day that you hear much. I know someone who is deeply impacted by the loss of life that day and it made it all much more real to me, I think in our 24 news hour world we are too use to hearing about death, that we are numb, but knowing someone effected made this event hit home. It was also the reality that for me in that world of a white girl, who was taught in school that racism ended when schools were desegregated, that the lies of the devil still had a stronghold on hearts and minds about race.
I was also listening to these podcasts with my kids in the car. And as the second one finished with tears in my eyes I had to explain to my 5yr old what that was about. And to explain it to a 5yr old who is different then the norm... trust me I have seen enough to know far too many people think people with disabilities are less of a person then others. I explained it simple, in her terms as not to overwhelm her.
Then she was silent. The car was quiet. And then she started to sing "the shadow proves the sunshine" and "I won't let you go." Those little hands went up in my rear view mirror as she sang about God not letting us go. I love her heart, that in the midst of darkness she turns to God for comfort. There was so much hope in her words.
So this is a really long podcast suggestion. I promise you that you won't cry every episode... some are funny, but if you are looking for how to make a world impact I highly suggest it, and listen to it with your kids, it might lead to interesting conversations but you grow from those... I want kids that are the hands and feet... not a bubble. And I know that it's a privilege I have to even have the option to have these conversations, for many families they experience racism that they have to talk about it with their young kids.

Here is the screen shot of the two pod casts I listened to yesterday. I have listened to several others from this podcast that are really good as well!

What we are reading

I posted the other day what I am reading right now (I finished Sinners in the Hands of a Loving God, and started A Farewell to Mars since then, another make you think book about the connection of empires and God) But it got me thinking, as a teacher I have always loved kids books and we love kids books at our house so I thought I would share our favorites right now, maybe you will get ideas of some good books, and feel free to add to the conversation in the comments (blog comments are moderated... thanks crazy people posting conspiracy theories... true story! so your comment will not show up right away but I will try to stay up to date with comments)

Doctors are very important at our house... so is our girls learning to not let people put them down because they are girls (The Faith Angle podcast had an interesting conversation about women and faith last week) so when I came across this book it had to have a home at our house

Lydia LOVES the peekaboo books! She laughs and says peek boo! When I use to work at a toy store I was really good at selling these books and now as a mom I still really like them

This is a really good story!

My kids love these easy look and find books... they get hours of love! The Sofia one is literally falling apart from how much it is read

My girls love to look at pictures of vacations, these autograph books are very well loved! Next time we go to Disney I might need to find a book that will last long term better

Any books about gardens!

These books are amazing about things girls have done around the world. It doesn't matter how you feel about the Clinton family, these books are really good!

We have a few of these books and really like all of them. The are great for taking with us and Jilli will play with the figures for hours

This book is cute. There are several along these lines out right now about since and they are done well.

Princesses and pineapples... this book is so Jilli! It is all about how fancy clothes are for sometimes but sometimes you need to wear other clothes so you can get messy in life!

Lydia loves these books with the reader

These shine through books are very cool!

It wouldn't be a Jilli book list without a body book. She reads a body book almost daily

This is a really cute book about a job, we like to read books about lots of different jobs

This is a cool book form the Indy children's museum. We bought it last year while visiting the museum and it is a really cool keepsake

I like these books because they are repetitive and filled with sight words

We don't own this book but Ann at RMH brought it to garden time and it is so cool how it engages the reader

With Jilli learning to read we have a few Bob books... this kit is my favorite because it has a workbook that goes with the books with coloring and writing to work on the sight words in the books

This book has pictures of kids in wheelchairs and talks about how beautiful everyone is 

So what kids books are you reading?

April is here

Ever have times you just look at your kids and go... "your smart... like scary smart." I buried the safari app on the ipads this week because Lydia figured out how to get to youtube once she was in safari. So she figured out if she went into the app for Jilli's Codji and hit "watch videos" it takes you to youtube to show you videos of how the product works and that she could hit suggested videos and find Elmo or hospital songs. One smart little girl!
She also blew Brent and I away last week. She was standing at the fridge where we have the Leapfrog letter bus and she would pick up a letter (not put it on the bus) and walk over to Brent and tell him the name of the letter... she did this with 9 letters!!! Brent looked at me and asked if this was normal and I said no, she isn't even 2 yet! We thought maybe it was just those specific letters she knows because of the bus but then the next day she was at PT and they have a magnetic wall with letters on it and she walked over and started picking up letters and telling us the names. Yup, Lydia knows at least 9 letters. No one has sat down and worked on letters with her, although she is around during Jilli's school time, she just learned by playing and watching. We were at the museum yesterday and she walked up and pointed to a 5 and said five so apparently she knows some numbers too. Her speech path was talking the other day how sometimes its hard to think of activities to do with Lydia because doing typical 1yr old toys is too easy for her. She is also one of those people who once she is determined to do something she is going to work at it with everything she can, however the flip side goes too, if she decides she doesn't want to do something she will come up with some creative ways to get out of it.
Lydia has also made a lot of improvements in speech and will soon be dismissed! Starting her on oxygen made a huge impact... imagine that, it takes oxygen to talk! She talks most about her friends Emerson and Oliver, infact most mornings she wakes up babbling all about them. The worlds Elmo and Fight (for Fight song) are also very frequent in her vocabulary.... as well as saying ow any time someones does anything she doesn't like, so much so that sometimes its hard to tell when something is hurting her or she is just mad.

Jilli also reached a huge milestone last week... ladies and gentlemen... we have a reader! She has been asking to read for a while but I wanted to work on foundational skills some more first but last Monday we got out her first Bob book and she did great. She now has a list of 11 books she can read. A couple of them she still needs a small amount of help but several of them she can read all by herself and has read them over and over. She is doing a great job! Wednesday we went to Barns and Nobel and for the first time ever she was able to pick up a book and read it (with a small amount of help). She was SO proud of herself! And it was a book called "I Love Pink" so even better in her world. I am so excited for her. We have reading time every morning once she wakes up and we work on reading skills, letter sounds, reading a book and writing. We are kind of doing a Readers Workshop style and it is working for her. Then when Brent gets home from work she reads her book for the day to him. The challenge right now is finding the right books for her. Some of the Bob books are perfect, others are still too hard, the leveled books at large retailers vary in skill so much (I often feel like those leveled books like that have little standardization to them) and I want to take this at the right pace for her. Its not like when I was teaching and had bins of level A books, honeschooling reminds you the cost of education! Thankfully both my mom and Brent's mom have gotten her some books to get her started.

This week we also had our meeting for the CTLS waver. This is a waver for people in our state who qualify for Katie Beckett. This waver is to help pay for medically needed things that KB doesn't pay for like respite and home modifications. Jilli has been on the waitlist for this waver since she was 18mo and her name just came to the top of the list due to a funding increase. I wish this process has been smoother then it has been but we are approved for 10 hours of respite care a month! This will help when I have things like dentist appointments for myself.

This week I was also had the privileged of being published again in Complex Child magazine! The article is adapted from a blog post I wrote on John 9, as this month's edition was on faith. I was really blessed that I was able to have my friends Jaime, Lauren and Elisha to message with to get their Biblical views on it to help check it for biblical accuracy. I am so thankful that college brought the three of us together. You can click HERE to see the article and I would love for you to pass it along to others you know, its not just for parents with special needs but also for everyone that knows someone with special needs.

We have most of the records in for NIH and I am really hoping the rest come in the next few days so I can get that sent in. I have finished all of the 36 page questionnaire for that as well. On Wednesday Jilli's PT and I worked on finding the right adaptive bike for Jilli so we can continue to work on the paperwork for Shriners to hopefully be able to get her a bike!

I also have never been much of a reader, I am more of a vlog watcher (mainly Disney lol) but I stumbled upon a few books and have spent more time reading lately. I just finished Never Say No, a really good parenting book (seriously, go read it if you have children in your house! and this is said by someone with a degree in early childhood education who has read lots of child development and behavior books). I am also in the middle of Wholly Jesus (good) and Sinners in the Hands of a Loving God (not a casual book, it is has started a lot of interesting conversations between Brent and I and also my friend Yoomi, its not a book for everyone, I think knowing what you believe and why is a good place to start before picking this book up). For someone who is not a reader (above kids books, I taught 4K, I LOVE kids books) I have been enjoying reading these books. I have also become more of a podcast listener (now I feel like a millennial lol) and have been really liking the Relevant podcast (faith with humor and similar world views), The Faith Angle (politics and faith, first one made me irritated, but the second two have been amazing) and The New Activist (ways to help others).  

So life has been busy here but it is rare that it isn't. Our Easter ended up calm because Jilli had a stomach bug that day that Lydia and I also got the "fun" of experiencing. The normal kid stuff still happens in our life too. Lydia also is on meds for a gut bacterial overgrownth again.  She is on probiotics to help stop these but every 4-6mo she needs a few days of meds to help her body keep the right balance in her gut.

So back to our calm day now, Lydia is napping on me as she woke up too early and Jilli is going between playing and resting, the children's museum yesterday was a lot of fun but we are warn out today!

Jilli's book list so far (plus the one she learned today)

learning about plant parts

story yoga

How Jilli's hand looks

Made a few Tubie Friends a couple of weeks ago (no worries, a while before the stomach bug hit, I don't make them if anyone in the house doesn't feel their best)