Monday, October 15, 2018

Capri's first day of preschool

Capri finally graduated the early intervention program to move on to preschool! I can't think about her teacher of the visually impaired (TVI) that we had with us for three years with out tearing up.  It was a really sad but a happy day to see how much Capri has grown.  She would come doctors appointments with us to help support me in asking the right questions or clarify for me.  She would be in our home every week to teach Capri how to navigate evey day things and help us know how to best help Capri. We'll miss her so much.

We had to do alot of paperwork and meetings to transition her out of the program and have the district decide where the best placement for her would be.  A school for blind children or the district special needs classroom.  I love writing special needs now, by the way. First, because it's true. It's a special classroom with kids with speech impedements and some other learning disabilities. Second, because it doesn't make me sad like it would have a year ago.  It's just a part of our life now and it's kind of sad but it's also the best thing for her all at the same time.  I'm just been so grateful that there are options for my kids. We are so lucky to have access to these different schools and to live in a city that has great resources for our kids. Anyway, the meetings were great and they walked us through all of it and we decided to keep her in the school district and we felt really good about it. She'd be with peers more her speed and she would be pressured to keep up with them.


We realized after we got her school schedule that there wouldn't be enough time to get Winnie from school and drive to pick up Capri so we would have to send Capri on the bus.  Her orientation and mobility teacher was hoping she would have to take the bus because it would help her confidence and help her be more independent.  Capri's number one song is wheels on the bus, so she was obviously ready to go on it.











Her new TVI was there the entire day today (normally she will only be there 30 mins a day to help Capri out) and would snap pictures and send them to me.  I got these in wal-mart today and I started crying in one of the aisles.  This is Capri with her teacher and I want to frame it.  She is the sweetest and I love how she is just in the moment listening to Capri probably going on and on about her picture she painted.  


Getting on the bus!!

When she got home it was the greatest reunion ever. We ran out the second we heard the bus coming down the street and squealed and cheered for her until she came down the steps.  This is the best time of my life I think.  Seeing my babies do what I didn't know that they would do.  Our family look s different than I thought it would but exactly what I know I needed seeing it play out now.  I have been spoiled with a life that I don't feel like I deserve. It seems like sometimes we've come out of this too easy.  Both of our girls are very typical.  We have a very normal life and I feel like it hasn't been hard enough. I might regret saying that one day and I probably haven't lived long enough to experience more stuff that is definitely going to come.  But at this point its been the easier side of life.  I try not to forget all the support from Heaven I've felt in those more sad days the past couple years.  Not take for granted all that is going well right now.  But how could you take for granted your little three year old with a cane climbing onto her school bus? It's as monumental as it looks.

First day of school!


 I'm jumping back to the first day of school for Winsley to also update on Capri's first day of preschool!

Winnie is finally a kindergartner and it's as mind blowing as people say. She was so excited and so ready. All summer we had been practicing little kinder workbooks and she did great at them so I was curious to see how it would go in the real classroom. I just wanted to be a fly on the wall during class! We had been at my mother-in-law's preschool which totally helped prepare her for kindergarten, but I didn't know how she would do with a brand new teacher that wasn't family.  That's a big jump for her and honestly a big change for us to not get an honest update on her every single day. 

We did little reminder pep talks leading up to the first day of school about including everyone and reaching out to kids in her classroom.  During the summer I'd see her in the ocean with some random 10 year old playing and splashing because she would just wander up to them and ask them to play.  I think it's partly being a innocent five year old, but partly a gift she has to notice other people's needs. She's been trying to handle rejection better because it happens when you ask every kid you see to play.  She'll come up to me after, a little bummed, and tell me they didn't want to play and lately she'll just move on. 

I'm trying not to throw around "I'm so proud of you." when she gets a good grade on a little test at school or get recognition of some kind.  I don't want her to think we would ever not be proud if she didn't get good grades or something like that.  So I'm trying to praise her on working hard.  How good it feels to push through something tough and notice how good it feels to finish something hard. We push little affirmations--I think that's what they're called? (Everyone is all about those lately it seems like.) Stuff like "I can do it. I can do it. I'm so strong." Even if she's doing a little jump off the couch or about to go down a big slide. And every once in a while I'll catch her whispering it to herself when we're out playing somewhere and she doesn't think I'm looking.  I love that she is starting to believe in herself so young and valuing some hard work. 


Day two of school I told my mom I was over homework and she just laughed with me and she's like try and take a deep breath and remember this isn't going away any time soon.  Homework is more of a pain for me but I think we finally have it down. She'll get a big two hour break after school to play with Capri (AND WATCH TV ;)) and then we start homework after Capri goes down for naps, and she usually breezes through it.  My friend's daughter has the same teacher but is in the afternoon class and we both talk about how we want to suck up to the teacher and be her friend and get her to love us.  Not for our kids sake--they're fine. But for our insecurities. We're planning christmas gifts and showering her in Diet Coke.


We love you Winners!!









The sunday before--not so sweaty. 

Wednesday, January 31, 2018

Christ


I found this picture online just before Christmas and I fell in love right away.  This miracle is obviously a very significant one for our family.  So I framed it and packaged it up for Dayton for Christmas.  We hung it up a week ago and every time I pass it, it just fits.  During the time we were figuring out Capri's stuff I worked on cultivating my testimony of Christ.  I think I remember reading somewhere, maybe from Elder Holland, or maybe I just made it up haha I don't know. But something to the effect of "if you don't know where to start reading in the scriptures or you're kind of stuck, study the life of Christ.  So that's what I did during 2016.  I studied his miracles, his parables, and the things he endured in life.  It was such a good foundation to start from when I felt pretty desperate.

There's an actual quote from Elder Holland haha that says "Brothers and sisters, we say we want to be disciples of Christ.  Well what does that mean? I want to be a disciple, but I don't want to walk where he walked, I don't want to say what he said, I don't want to feel the way he felt, and I sure don't want to shed the tears he shed."  That rang so true for me when I first heard and I honestly felt really guilty.  Think of what Christ went through in his life.  He was abused, bullied, betrayed, and beaten.  Things happened to him out of his control.  He was at the mercy of someone else's agency---almost always.  And his response was always "Father, if it be thy will".  I spent alot of time fighting all of this hard stuff.  I wanted to walk with Christ, even be like Christ but I didn't want to accept this trial.  So as I studied His life I usually found myself simultaneously studying the Plan of Salvation. Why are we here? Why do I have to experience pain.  I kind of have had this thought in the back of my head that if I do everything right nothing bad will happen.  Kind of a defense mechanism to suffering.  I know that sounds like such an immature thought, but I really have felt that.  And what that year of focused studying taught me was hard stuff is going to happen and I need to allow it.

I am always re learning that opposition isn't always punishment.  That's been confusing for me a lot of my life.  Sometimes trials are a natural result of our sins, an effect of someone else's agency, or simply something out of our control. BUT no matter how they come, they are always an opportunity to strengthen our relationship with God.  Over the span of a year I would get little bits of revelation along the way.  I have always known God is with me in my trials.  It has never been my experience to feel abandoned.  But I knew I did not understand why Christ had to come and die for us, and how this fit into the purpose of life as well as I should of.  I needed to get my own personal testimony of that and little Capri and even Winnie were going to teach me that.

When things come up, related to Capri or not, I just try to take deep breaths, say a quick prayer, jot down some things I'm grateful for, and remind myself that this is part of life.  The push and pull. The good and bad is necesssary.  I plead for help to be ok with all of it.  Along with becoming like Christ/ being His disciple, we also believe, as members of the church, that we are working towards being Gods one day.   I see life now like Godliness training.  Again, I thought about what God experienced.  He sent his perfect son to be sacrificed for his children.  And now he gets to watch his other children struggle and make mistakes alllll day long.  It's excruciating to think about.  We will experience a variety of suffering and part of our job on earth is to invite Christ into our life through all of those times.  

Capri's therapy has taught me some really important truths.  When her therapist comes over every week we usually work on structured play.  We assess what she needs work on and then find activites to help her!  Blind kids tend to use just their thumb to press on buttons so we regularly practice "using pointer".  We had to get her comfortable using her pointer finger and then practice over and over pressing buttons with it so she could strengthen her muscles.  She had this one toy she couldn't push easily with her index finger so we would work with that toy.  Most times she would go 90% of the way, but she couldn't quite get the last 10.  It was so frustrating for her and its painful for me because she's SO close to getting it.  There were times, in the beginning, I would push her finger to show how little she had to go to hear the music on the toy.  But it came to a point where I had to let her get frustrated and gain that muscle in her finger by repetition.  I would cheer her on and encourage her and just tell her how close she was.  One specific time, I had a really clear, sweet feeling that this was how God felt about us.  He does not sit back and watch us struggle.  He's right here.  And what I really realized was he allows things to happen to us, but it is not with malice.  He doesn't say, "Here are your babies with hard lifetime medical issues, or a devastating divorce, or dark family problems and now you're here and just deal with it."  It is so loving. He's rooting for us.  Of course he can easily take us out of our struggles much like I could have pushed the button for Capri.  But that smile on her face and the pride she felt when she actually got it is second to none.  But she had to work it out on her own.  That is a principle I had to learn how to feel about God in a big way.  It is not in his nature to rescue us from everything, like parents can't and wouldn't rescue their children from everything.  And what God does every day goes beyond anything I could do for my kids.  He provides support, but most importantly eternal hope and promises. 

Right now in our lives, things are pretty great.  I walk around anticipating that other shoe to drop a little bit.  What's it going to be this time?  And when I get that anxiety now I try and remember how close I felt to God last year.  I'm not alone.  Whatever comes will hurt.  It will stretch me and push me.  But I will get a chance to change.  It's an opportunity take a broken heart to a loving Heavenly Father and ask for help and know that, without a doubt, it will be made whole.  "And we get back something better than we gave."  You don't even get just a fixed broken heart!  You get it back gold plated, shiny, bigger, stronger.  It's really incredible.  I look forwards to that day of relief for my kids so much.  But I hope neither of them, including myself, waits until the end of our lives to find relief.  We can find it woven into the details of our life every day.

Friday, November 24, 2017

Cane

What a week! When we got back from Florida and moved back into our rental I noticed immediately Capri bonking into the couch, counter, table, and tumbling off the back step.  Capri adjusts so quickly and well that within a day she was find and remembered our house but it was a huge eye opener for me.  We had been in Florida in the same house for 3.5 months and she knew the house almost perfectly.  But coming home and seeing her run into stuff reminded me how poor her vision really is. I think I've kind of confused people saying Capri is blind. She is.  At a legal level she is blind.  But we always knew she had some vision.  She walks, talks, identifies objects, and has a lot of useful vision.  She is a very normal little girl and so many people, if she wasn't wearing her glasses, don't even know something is "wrong" with her.  She adapts well which just confuses people even more.  But her eyes are googly and she has a hard time focusing and what I rediscovered as we moved home was that her peripheral vision is extremely poor.  She has difficulty noticing things up or down or side to side.  She has to actually move her head in the direction an object is to see it.  You'll hear us constantly say "Capri look down!" because she's running right over a bag of wipes because she just doesn't have that lower vision to get a full picture of the entire room.  Truthfully, we don't know how much she can see or exactly how much her glasses help but as time goes on and we have experiences in new places we learn more.

Anyway, when we got home we met with her vision therapist and her orientation and mobility therapist to do her IEP I told them what I was noticing.  They agreed that she needs some support in her movement.  O&M decided to introduce the cane! You guys, a year ago that would have had me in tears but that day I was so peaceful and excited about it.  She needs it so badly.  So we waited a month to get a cane and her therapists prepped me for just 30 seconds a day of cane work.  Don't stress over it, make it enjoyable and have low expectations.  They told us to get a command strip and hang it on our wall in an open area and just ease into it.  We were all so excited to introduce it to her! I couldn't wait to see how she would do with it.










She took off! 
Update: She now takes it to church, to the store, to the park and loves it!  We talk about everything when we walk around with it. We're constantly narrating our outings.  "Cane in front!" "Cane found the rocks!" "Cane helps you find the street!" "Can cane find Mom's leg?!" That totally help her pick up how useful her cane is.  She loves finding the different textures around her.  She loves the bumpies (truncated domes)!  Thats the bumps on the pavement where the street meets a side walk. She always bends down to touch them and says "oh bumpies!!"  You learn fun new words for things you never noticed when you have a baby who is blind! We've learned to be quiet while crossing the street so she understands it's a very special time to be aware.  Even when we take walks in the stroller Winnie always makes us be quiet when we are in the street now haha.   


Perfect costume for our girls! 







No more tears about how scary a cane is!  I've only got time for a new hope of how normal a life she will live! We love you Capri pie! 

Tuesday, September 5, 2017

Disneyworld

We just got back from Disneyworld about a week ago and it was sweaty!! haha Seriously though, we were drenched. The weather was one of the things I was stressed out about most. I kept checking the weather  a week in advance and looking up weather history from past years in Orlando.  Who does that.....But you do not want to be around me when I'm hot.  :/ Somehow I think we were all on a high from being there we just paced ourselves and prepared pretty well!


We spent three days there and went to Magic Kingdom twice and then Animal Kingdom!  We talked this trip up sooo much to Wins and I had been planning it for months.  It really was the best/easiest family vacation we've taken all together.  I used to be so overwhelmed "being the parent" now on these types of trips.  I would always sleep the entire time and gave my Wendy's order to my mom while I listed to my emo songs in the backseat.  But it really is so much fun now!  It's like you're playing house.  Getting lunches packed for the day, snacks, water bottles, figuring out hotels and cutting up Mickey waffles.  I kind of live for all those mundane kind of things we do for the girls to have this trip.



Even this little babe was so excited!! Capri does not stop talking.  The night before her and Winsley were giggling until maybe 11pm.  They sleep in a pack n play together every night and have been for a month.  Sisters are the sweetest.


I love them! 


 We survived, babe. And honestly survived isn't the right word because we were just on it the whole time.  haha Doing diaper changes while feeding one kid and swapping rides while one baby naps.  We high fived a couple times.  



9am and just so sweaty haha Dayton and I begged Winsley to take her jacket off so many times that morning because it killed us looking at her wearing another layer.

And Capri's squinty eyes.  She is so sweet.  I can't tell you how many times people taking our picture told us "Uhhh the baby isn't looking this way." And I'm just thinking she doesn't know who or where you are, it's fine. We got a couple good ones though!





The princess meet ups were my favorite part.  Wins totally down plays it and barely smiles but then squeals as we leave and talks about it for the rest of the day.


Another sweet squinty eye picture and Winsley looking indifferent. haha







As I was looking through the pictures of Wins and Buzz I kept trying to find pictures of us all smiling and then I looked to make sure Buzz was smiling.....haha he had that covered.





Any rides with a breeze were our favorite!


Can't take it.  They're best friends. They loved the teacups and Dumbo type rides together.  Capri loved It's A Small World and loves singing it to us.  Wins would prep Capri before the rides that she already knew.  "Ok Capri it's going to be kind of dark but you'll be ok, you'll ride with mama!  Are you so excited!?" She leans down to her and talks to her like a little mom. haha 


Animal Kingdom! The safari ride was so fun and Capri loved the Na'ali river ride because there were sooo many lights.  She was dying over them. She kept saying "Touch! Touch! Light! Cute!" and then she touches her face with her finger and says "So niiiccee" like as if we're telling her to be nice and not hit. I don't know why she picked that up when she see's lights but I feel like they make her so happy she just associates that word with it?  It's really sweet!




We grabbed tickets to the Lion King show that night and I ran over to see if we could get some better seating for Capri.  I explain her situation and they were so accomodating and kind about getting her front row.  The Lion King songs are emotional enough but seeing Capri light up the way she did was on a whole other level.  Her vision close up is much better and if she was back row or even a few rows back she just doesn't understand who is infront of her moving or what the lights are for.  She was way more engaged and enjoyed it like I'd hope she would!  Those small little things make such a difference for all of us.




Back to Magic Kingdom 

This cinnamon roll was ok. What I loved from Gaston's Tavern was the pretzel sandwhich with ham and cheese. I couldn't pin point why I liked it so much and what it was about the cheese I loved.  Then I realized it was a glorified hot pocket.  I am proud trailer trash!


At about noon every day I just gave up trying.  We ran through the splash pad right after this.  Winsley loved the Barnstormer and the videos from this ride are amazing haha.


Doesn't get better looking than a man with softserve.


That's it! I'm so grateful we got to take this trip and spend so much time with Dayton as a family.