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.



Wednesday, June 7, 2017

Florida

We're here in Florida for the summer and we're finally together after almost 2 months.  I didn't know how much I would love it here!  It's kind of different from what I thought it would be and people honk alot hahah, but I'm getting tough skin and we're settling in.  It's been really rainy for the past couple weeks and it will be for the next two weeks, but those sunshiny days are so good. 

I knew we would be close to the beach and I was really excited but I figured we would spend most of our days at the pool like Houston last year.  I get overwhelmed sometimes packing up the girls with snacks, towels, and all the other beach stuff you need so I kind of mentally planned we'd only go maybe once a week.  Plus, I get grounchy in the heat.  My mom knows this about me I think. (She for sure does)  Before I left she said, "Figure out a system to get to the beach.  This is such an incredible opportunity to spend the summer near some of the world's best beaches, so don't stay inside! Figure out how to make it easy.  Don't pack too much stuff and just go!" I love her. And if my car wasn't currently in a half foot of rainwater in the parking lot right now I'd be keeping my word to her.

The beach is perfect.  Really!  Last time we were in California with the girls we parked 100 yards from beach and then we had to walk 200yards+ to the actual water with all of our stuff and kids. haha Dayton and I looked at eachother and we're like "We're definitely the parents now." Walking in sand is hard too. haha But the parking here on weekday morning is really open and you can usually park front row and you take, I dont know, 50 steps and you're at the water. Ahh and the water.  It's so warm.  You don't even flinch getting in at all. Capri just walks around playing right along the shore line.  She'll walk around listening to her feet barely tap the water and Wins is building sand castles with me and jumping waves.  I look at them and I get a little teary haha.  I hope they will have the best memories spending their childhood summers at the beach.  I keep looking through my phone and I have so few pictures of them at the beach, but I kind of like it that way.  It means we're all too busy being together to remember to grab our phones.

I keep texting Dayton how happy I am.  My mom was right, this really is such a unique opportunity and I'm trying really hard not to take it for granted.  I love the slowness of summers.  Every meal is eaten at home, no home normal home responsibilities, and hours at the pool. We get a little bored sometimes, so I'm forced to think of little charts to make, going to the library, or random activities since we don't have family to hang out with!  

Aside from the beach we go to the pool most of the other days and play with the other babies that are here!





 Capri will be wearing that little boy rashguard and bucket hat all summer.  Just prepare for 80,000 pictures of her in it.




We love Florida. 






Sunday, January 1, 2017

2016

Ah this year is basically over and I'm pretty sad about it.  My heart has been broken this year and at almost the exact same time it's been healed perfectly from the inside out.  There's more room for love and understanding.  I remember the day after we got home from the beach the day we found out about Capri and I was taking a hot shower alone while my mom had Capri in the main house.  I would start to cry and then force myself to stop and just felt so numb and empty.  I'll never forget those feelings and I cry everytime I think about it.  Somehow, though, this year wrapping makes me nostalgic.  I've come out of that dark hole almost completely.  Sometimes I pay it a visit haha but it's never that long.

Gratitude has played a huge part of my life this year.  It's the one of the main reasons my heart has healed.  I have never practiced active gratitude like this in my life.  There would be times I would be waiting for a phone call from a doctor or I was stressed out.  In those situations I would literally run to my room or hide my phone in my lap and start listing the tiniest things I was grateful for.  I would do it just rapid fire bascially before another negative or pessimistic thought could enter my head.  If I let myself even for a second linger on what could possibly happen or what was currently going wrong I would spin into a dark place.  I'm in a better habit of just subconsiously thinking more gratefully, but it's a practice.

I used to think every year that goes on is "my hardest year" and be kind of exhausted at that.  If we're going off the current trend it's probably not going to get easier.  My heart will break another 100 times.  I'm kind of counting on that now haha.  But every single year we learn something new.  We get the opportunity to refine the strengths we have and realize weaknesses we didn't know we had.

I've talked about this a little bit before but I think I tend to be a pretty heavy friend.  I don't really like small talk.  I know it's a natural/necessary way to get to know someone but the faster we move on from the surface topics the better, in my opionion.  I love to get to know someones heart.  What have they been through that makes them think a certain way.  I love talking about parenting, marriage, families, the Gospel, Christ, and past experiences.  I know those can be deep topics for all of us and sometimes I feel like when people are done talking with me they're like "whoa that took everything out of me" (I feel like that too!)  But maybe they also feel like "I learned something about myself by just talking outloud." I know that happens with me every single time I meet up with a friend and converstaion heads that direction.  I have a few goals for next year that I need to get written in my journal but one of them is about being a better friend.  I have so much to learn from other people and other moms.  We have a great ward and I love the women I've talked with.  They have shared their hearts with me so quickly and I want to work on being a better listener.  This year I've had countless people who have spent time listening to my heart, watching our girls, or sending me notes of encouragement.  I would be incredibly ungrateful if I didn't reach out to whoever  might need me to just listen.


I'm really sad to see this year in our past but we leave on a cruise this week so what a way to start 2017! haha

Friday, December 30, 2016

Foundation for Blind Children

Today we went to the Foundation for Blind Children.  Capri's therapist encouraged us to go on a day she was going to be there and our schedule's finally calmed down so we made a point to going!  I've heard nothing but good things about the campus and their programs so we were excited! Their program director has walked me through every step of getting Capri set up with a therapist over the phone and getting evaluated.  There was one time over the summer I called her and kind of let it all out to her and she was just the most loving and encouraging person, so I was super excited to put a face to her name. It was pretty nerve racking deciding to finally go.  I didn't know what the set up would be or if Capri would like it.  It felt like this would kind of make it real.  I was scared to see kids with canes.  That sounds so superficial, I know, but I told Dayton I would have to finally accept that that's what Capri's future would be.  He made a the point that she may not need a cane (he's being optimistic I think ;)) so we don't need to worry about that right this second.

We got to the campus (they have a preschool for blind children attached to the facility) and were greeted by Capri's therapist.  Immediately, I felt at ease seeing a familiar face.  When I walked into the gym and saw all those sweet perfect children and their parents I wasn't scared anymore.  Ok, I was still nervous, but the longer we sat with them I just wanted to squeeze all of those parents and those angel kids.  

We immediately split into groups to focus on different developmental skills.  Sensory, language, and vision.  Capri wanted to put everything in her mouth haha!  They did an activity with mashed potatoes on a sheet and she just ate all of them!  Dayton has so much time off now he's been to alot of doctors appointments and got to come that day! Uh I didn't know what I was missing all this time!  He asks the right questions, he asks a lot of them, and is just so social with everyone!  In situations like being at the foundation I tend to keep to myself.  I try and take it all in and just focus on Capri and I think he can sense the tension.  So he'll ask the mom next to us how old her little boy is (who was having a hard time) and just try and lighten the mood.  



We went to a few stations, met some other parents, and some of the staff.  It was sweet to have something so personal in common with someone who doesn't speak the same language as us or live in the same area.  We could relate on a much deeper level aside from both being parents.

They had a few volunteers helping out with crafts and activities for the siblings while the kids did their rotations. Wins was in heaven!  I don't even think she would have cared if we left.  We tried to explain before we got there that there were going to be special little kids like Capri at the place we were going, but she obviously didn't even notice.  I don't think we'll mention things like that to her again.  I want her to become accustomed to having friends that are different that she just doesn't even think twice if she see's someone like the friends she met today.

After the rotations they assigned a volunteer to Capri to watch her while the parents gathered in a conference room.  The topic for the parent support group was grief.  It was a heavy topic for our first time being there.  We have been in our own little world for the past couple months.  We talk about blindness sometimes. It is still hard for me to categorize Capri as blind.  I usually just say visually impared if it gets brought up at church or in public. We talk about it occasionally when her therapist comes, but mostly we're trying to live as normal lives as possible.  When we sat down everyone went around the room and people started introducing their families.  They would give a little summary of the vision problems their child had and what they hoped to get out of coming to the foundation programs.  It seemed like most people were fairly new in coming so there was a lot of fresh emotion.  It was heartbreaking to hear some of the things these parents and children have gone through and what they will continue to struggle with.  You know there are kids like this around you, but to look their parents in the eye from across the table and listen to them tell their story it just gives you a small insight as to what they deal with every day.  I can't explain it.  I wasn't a complete mess.  Luckily, I didn't go full ugly cry but I did manage to cry just enough to give myself a headache haha. I had Dayton do our introductions because I knew I couldn't talk about Capri without going to that bad blubbering spot.  I'll open up the more we come, but I just couldn't so soon.  It has been a while since I've cried for about Capri so this will definitely help me deal with it.

Everything any parent talked about, I had experienced. There was a lot of nodding going on from the entire room.  I felt really understood and grateful for the road we're on.  One man who spoke spanish had a translator relay his introduction to the rest of the group.  He finished his intro by saying, "I believe and love God and I am so grateful for my beautiful son and that we are his parents."  Maybe that's when I just realized I couldn't say anything more profound and true than what he just did.  It was such a sweet moment.

When the meeting was over, Mary, the program coordinator, gave me a hug and told her to call her anytime.  She could tell I was really struggling.  You know when someone hugs you and it's a real hug?  Or when they ask you how you're doing.  Not like, "Hi, how are you?" like it's a habit, but they really want to know how your heart is doing. Usually mom's know just how to say things like that just right to make me want to burst into tears.  Thats exactly how she said it.  She even handed me her card again as we were leaving the building.  Was it that obvious I was not OK? haha






My angel girl! 

This was written a while ago and we've been another time since I wrote this.  I get gun shy about posting these really personal posts but oh well!