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!


Wednesday, October 19, 2016

Ok so what have we been doing....


We moved into a cute new house in Gilbert in the middle of September.  We're all obsessed with it! We've lived in prettty rough places our whole married life which was no big deal.  It was the stage of our marriage and it worked out just fine, but at this point we were ready to be somewhere where we could let Wins ride her bike down the street and wouldn't worry.  The house has this covered little courtyard Wins will play in while I make breakfast and it's kind of picture perfect and I really have to stop and soak in those moments.  It feels so surreal!! I can't believe this life is mine! The girls are starting to play and read books together and it's pretty cute! It's exactly what I pictured when I found out we were having another girl.  Dayton is also home every single day all day and it's heaven.  I haven't grocery shopped with my kids in a month!!!! The best part!  haha He can run Winsley to pre-school and we get to eat dinner together every single night.  We also moved back closer to our free babysitters! Date nights to the movies or double dates with friends keep us both sane so it's nice to have everything so convenient!

Living in Arizona has so many perks but I get stuck in a rut.  I get in the habit of not reaching out in my ward as much.  Not attending all the extra ward activities or calling random women in the ward to go to the park with our kids.  So I have to cut that out and push myself a little bit! I'm excited, though, our ward seems great and I get a calling Sunday, so we'll see!






I loved having a family day, but this was way too expensive for quality time together. haha I'm cheap and next time we'll take a walk...... 



Capri is always banging on something or sitting at my feet crying while I make dinner.  I think this night I turned on music and we were all dancing.  You should see that girl body roll.




Best helper.  It takes 3x longer to unload the dishwasher when Wins helps me,  but she absolutely loves it.  Gathers each utensil that matches and then she makes me pick her up so she can put them pretty in the drawer.



Wins is in school at Daytons Mom's preschool.  She loves it!  She has been going to preschool classses since maybe 8 months so she's used to the schedule but being an actual student has been a whole new thing!  It's been really good for her to be in a classroom setting.  She has needed some practice sharing and not throwing tantrums.  Thank goodness Dayton's mom is her teacher! :)  Her cousin Tala is in class with her and they're little buddies!







Wins is also in the Why stage.  It drives us nuts.  Let's just say that.  Sometimes I'm in the middle of trying to explain in depth why the carwash is closed at 7pm at night and then I'm thinking WHY am I doing this?  I'm 25, she's 3! It's closed at 7pm and that's it.  Because I said so! haha but then I'll be up at night thinking how sweet and curious she is and I promise to more patient the next day.



Wins also has two surgeries she needs to get done by the end of the year.  We're trying to get every expensive healthcare thing done before the end of the year so hopefully next year will be a little bit more kind to us in that area. haha They both will be pretty long but we're anticipating a smooth recovery.  I'm sure they'll go well, I'm just worried about her getting put out now that she's so aware of what's going on.  When we went to her plastic surgeon to talk about that surgery, she told everyone she saw the rest of the day her "really nice doctor".



Capri has been having a visual therapist come every week and it's been amazing!  The first day we met her therapist they clicked instantly.  Capri has been fussy around strangers lately, but she was drawn towards B right away! We just started really getting into the structured play type visits.  Helping her learn to reach inside something to get an item or learning cause and effect with toys.  All those times Wins would pull out all my tupperware from my cabinets in Washington at this age would drive me nuts.  But now I'm encouraging Capri to do that. I didn't realize how important it is for them to learn to put things in and take them out.  Any time I'm tempted to get frustrated that Capri tries to play in the toilet or pulls all the toys out of a box I'm reminded that this is good she's curious.  It's good she is exploring and getting messy  (obviously we'll work on not playing in the toilet water) and discovering things.  We have a lot to work on and every time B comes we have new things to practice with her for the week!  She's growing so much! She'll be walking in a month or two I think and that will be tricky but I can't wait!





Her cross eyes kill me.  I am so obsessed!  

Sunday, October 16, 2016

Capri turns one

Capri is one!! And this year has flown! Based on how fast this year has felt I'm guessing the more kids you have the less time you have to stop and enjoy them.  So even though you feel like you gave birth two minutes ago they're actually one and they'll be in highschool tomorrow.  It's so fun.  

Anyway obviously it's been quite the year!  She arrived in the world fast.  From the time I arrived at the hospital to the time she was born was a swift and painful hour :)  I'm glad I didn't have to wait very long in pain to hold her.  A minute more was too long without her.  I remember talking to her in those middle of the night newborn feedings "What are you going to be?  What are you going to do in the world?"  I instinctively felt she was going to do something big.  I worried after she arrived those first couple weeks about really bonding with her the way I did with Winsley.  It was hard to split my time with two kids.  But two months later we were in the hospital and the familiarity of being there with Winsley so soon after she was born came flooding back.  We bonded.  I ached for her the way I ached or Wins and it's not the traditional way to bond with your baby, but just like any other relationship the more you go through together the more inseperable you become.  She cries a lot and she has been a really hard baby haha I won't deny that part. But she will get a pass any day of the week for everything she has been through.  She has improved and grown so much just in these past couple of weeks and I'm so proud I could die.  Celebrating her first year was a huge milestone of seeing her growth.  This is not how I expected this post to go. ugh haha It was just supposed to be about Costco cake and pictures of her. I can not talk about Capri without talking about how she has changed our family.  I'm sorry! But she is just perfect and has the sweetest spirit about her. 


She's crawling all over the place, Clapping, waving hi/bye (THESE THINGS ARE HUGE for her growth), saying mama--kind of, sharing her food, and giving kisses! Capri We're obsessed with you and can't believe you're ours!








 On her birthday we kind of did nothing. haha We spent all day cleaning the house to get ready for her party and Wins spent the night at Gramma's so she missed most of the day with us! She basically cried all day, but with good reason I guess!  She is finally getting her two bottom teeth!  We grabbed Costco cake (a birthday tradition at this point!) and pizza for everyone.  I have eaten so much cake since her birthday.  Honestly, it's sickening, but I'll probably have it for breakfast tomorrow morning still. It was the perfect night with all our family partying with all of our favorite baby girl!  












Tuesday, August 2, 2016

Leber congenital amaurosis (LCA)

Written July 22th, 2016


Here goes. I sit here like I did over a year ago, writing about Winsley's seizures/tumor. That all seems so simple compared to the weight we carry now. I remember Winsley's diagnosis feeling devastating and complex too, though. I need to go back a few months to catch most people up with Capri. 

 On December 13th, 2015 Dayton and I sat at our ward Christmas Party in Mesa.  Capri was just shy of two months old at the time.  I was watching her as she sat in her carseat while Christmas hymns played in the background. I suddenly noticed her eyes jumping back and forth rapidly, occasionally rolling forward. It was weird and I immediately panicked.  I nudged Dayton and asked what he thought.  We're pretty familiar with seizures, and that was my initial thought.  Dayton trusted my instincts and agreed it was odd so I quickly left the gym and left a message for her pediatrician.  The on call nurse told us to take her in, but we decided to watch her that night.  We eventually chose to take her into the hospital around 11am the next day. I half knew nothing could be done, but I was in a panic with the uncertainty. They admitted her that Sunday morning and we stayed two days. They ran an EEG (to check for seizures) test that came back clean so the neurologist recommended we see an Opthamologist as soon as possible.





 We set up an appointment for the following Tuesday.  Nystagmus was brought up at the hospital (since she didn't track objects & her eyes shook a bit) so her Opthamologist examined her and encouraged us to enjoy our Christmas, not to worry, but to bring her back in two months.   He assured us he had seen this before and all her eye structures checked out fine.  I was grateful to have those instructions even though two months later we brought her back with little improvement.  It helped us enjoy Christmas like he told us to. Over the next couple months I was prayerfully trying to decided what we should do. Something was off, but none of her doctors seemed particularly alarmed!  I had been reading and researching in vain. I have wished so badly I could Google Capri's specific symptoms and get an immediate diagnosis.  Every story I read online was a little bit different than our situation so I wrote off every possible diagnosis. The problem with diagnosing her was that every exam done by an eye specialist looks completely normal. So her eyes look okay other than being googly and lack of eye control. Most times I wasn't that worried. We were living our lives, loving getting to know our new baby, and keeping to our normal activities.  It didn't consume my life or thoughts, but it was in the back of my mind in between appointments.  I kept telling our families she'd be fine. Which is not my personality at all. I'm the worrier. I decided either there really was nothing seriously wrong or I was being given some inner peace to deal with what was coming. 

In March, around six months old, after seeing her Opthamologist in Mesa, her doctor recommended we see a retinal specialist in Phoenix.  While meeting twice with Capri's Opthamologist I kept having the feeling that we should get a second opinion. It was a feeling I had never felt with Winsley. I always felt confident in the advice and care given by her doctors.  Maybe it was just that we needed more screening to be done that he couldn't do, I'm not sure.  I thought meeting with the retinal specialist would resolve that impression, but as we wrapped up the visit he kind of gave me the run around. Again, her initial exam always checks out fine. We discussed the retinal dystrophy Leber Congenital Aumorosis (LCA), but he summed up the visit by saying, come back in six months and have her Opthamologist see if her slight farsightedness gets worse. That didn't sit well with me. I refused to wait until she was one to hope this would fix itself. I told him, as gently as I could, "I don't feel like I have any more answers than I did when I walked in. I'm going to leave, call my husband, and not have any new information to give him." I asked him to please give me his best guess as to what it was. He concluded he thought it would be Leber's and to get working on getting her a sedated ERG (Electroretinogram) out of state since no one in Arizona does them. The ERG would test the light activity absorbed by the rods and cones in her eye.  The only way to confirm LCA is through genetic testing but an ERG would give us a better idea of how much light her eye is absorbing.  The way I describe an ERG to family and friends is by comparing it to a heart rate. When you're alive you have a heart beat. A heart rate monitor will have spikes and dips indicating your heart is working. When you're dead, you flat line. An ERG measures how much light is being absorbed in your retina's. If your eye does not detect the flashing lights during the test it will not have any hills or dips, it will be flat. (most kids with Lebers have flat ERG's.) A flat ERG indicates various stages of blindness.

 I left that appointment feeling sad, but ready to get moving.  I got in my car and called Dayton.  Obviously, neither of us wanted to accept that she could be blind.  His response, in true Dayton fashion; how do we fix it.  I tried to lay it on the table as a possibility not a definite diagnosis.  I spent the rest of the evening adding myself to Leber's Facebook groups, asking questions, and introducing Capri and her symptoms.   I recieved an overwhelming, but devastating response. "Sounds just like my daughter..." "That was exactly our story..." "My son had the same experience..." I read a few comments and felt mentally and emotionally spent, so we put the girls to bed. Overwhelmed with the day I walked back into our room alone, our girls scattered around our room sleeping, and I collapsed to my knees. I sobbed and and prayed. I ended up falling asleep on the bed kneeling and some time later Dayton came to wake me up.  He had written one of his mission President's for some counsel. His response will always be sacred to us.  I've often thought back to it over the past couple months, when I've needed some strength.  I went to bed with gratitude for a humble husband, beautiful baby girls, and special spiritual experiences I had as I prayed that night. 

 Over the next couple week things miraculously came together. My aunt and uncle in California have a brother-in-law who did a fellowship with a pediatric Opthamologist who is the chief of the vision center at CHLA.  We were deciding between getting testing in Texas or California, but having a family tie to a doctor felt like the right move.  I spent hours on the phone with our health insurance getting an override to see a specialist in California and tried to anticipate when we would be getting the test done over the summer. We were approved to travel to California for testing a few short weeks later!

 In the meantime we packed up and joined Dayton in Texas until Fall. Being at home as a family again was so incredible.  I remember so clearly the second night we were there. We all sat on the couch together watching the lightening in our dark house and I just kept feeling at peace and in love with the family Dayton and I had created.  Like no matter what was going to happen this was exactly where we were supposed to be and this was exactly what our family was meant to look like.  Mid July came quickly and we were headed to Arizona to drop Winsley off with family and my mom and I started the drive to California.

 Monday July 11th, 2016, was her clinic visit. We waited in the waiting room longer than any time we had been seen by a nurse or her doctor total.  The appointment was quick!  Her doctor didn't answer too many questions we came ready to ask other than confirming the possibility of Leber's.  We all decided to ask questions until we had results to look at.  We left the hospital and enjoyed exploring Los Angeles that afternoon, anticipating an early surgery time of 5:30 the next morning. I turned in early with Capri that night, again feeling extremely calm. I knew getting a flat ERG was definitely possible, but I think I was in denial that it could happen to Capri. Another one of our children having a crazy rare syndrome was too coincidental.  Testing day was a long, drawn out morning. We arrived at the hospital at 5:30am and began the waiting, testing, and giving her health history to every person that came into our room.









those cheeks!!!!!!!!

 We took lots of pictures. Capri did so well most of the morning! She was smiling and snuggling all while being hungry so we capitalized on it. :) When we moved up to the surgery prep floor she started getting fussy, naturally! Children's hopsitals are tough places to be for any length of time. Every time I'm there, it calls me to gratitude. We chatted quickly in the elevator with a mom who's 17 year old son was having back surgery and we saw severly handicap wheelchair-bound children. My heart broke for those children and their parents.  As we settled onto the surgery floor my mom and I distracted Capri as best we could from her hunger pains with toys and walks around her hospital crib. Her Doctor's NP came to check on us, review the procedure, and gave Capri some eye drops. I held Capri's hungry body in my arms while Kathy issued her drops.  I knew we were close to starting the test and I couldn't wait for everything to be over, no matter what the result! At 7:30am the nurse promptly came to get Capri and whisked her away for her test. We snapped a couple more pictures and headed downstairs to check in to the waiting room.





Best mom for coming with me!





^^Last FaceTime with daddy!!! One of my favorite pictures ever!



 It didn't seem too long before we were called back (about an hour and a half). The receptionist escorted us back upstairs, near the surgical waiting room, to the consulting room. This is where the anxiety came on strong. I kept telling my mom, "I hate doing this. I hate waiting. I hate waiting for doctors to diagnose our kids with really hard things."  I just wanted it to be over.  The Doctor walked in with a laminated white paper and a few other papers behind. I knew I was looking for ups and downs on a chart. No flat ERG no flat ERG, I kept repeating to myself. He showed us the laminated page first and I tried to listen but the first page I saw had ups and downs on the graph!! I let out a sigh. She was going to be just fine! It's not flat!! Then I mentally came back to the room, started listening to him again, and realized the laminated page was a sample graph. The sample graph showed a normal ERG.  Just as I realized that he pulled out Capri's results from behind the front page and I looked at her graph to see no hills. No dips. Just an essentially flat line. I think it goes without saying what my reaction was. I felt pretty dumb and completely devestated.  Capri is blind.


 My mom and I kept reassuring him (ourselves) but she see's us sometimes!! He agreed that the line and numbers shown were averages. It doesn't mean she see's complete darkness, but it does mean her vision is extremely poor. And I think extremely is putting it mildly.  How was I supposed to call and tell my husband, in the middle of his work day, that our baby girl was blind?  It was all I could think about. My mom took over with the questions we came in ready to ask.  Dr. told us to get in touch with the family specialists who can help answer therapy and support questions for us beyond the clinial diagnosis. After he left I gathered whatever courage I had to go call Dayton in the hall. I was hysterical from the moment I heard his voice. Our conversation was brief and emotional.  I came back to the consulting room and my mom and I sat in silence for close to ten minutes waiting to see Capri.  I felt empty during that time,  just staring at the white walls.  I couldn't wait to nurse and cuddle Capri. The reunion with your baby after "surgery" is the most tender thing especially after everything we just learned.  As we walked in to see her laying in the crib, I fought my tears.  She's so perfect and innocent.  She has no idea what's going on and that felt very unfair to me, for her.  Does that make sense? I don't think Why Capri? or Why me? very often, but in that moment I struggled.  Not Capri.  I didn't want this to happen to her.  And I don't wish it on anyone either!  I don't want there to be sick babies or hurting parents.  But for that moment I kind of resolved to just deal with those feelings another time.  I could feel her spirit ease my heartache.  I soaked up cuddles and tried to calm her body as she woke up.



After we left the hospital mom and I drove around Los Angeles sightseeing.  We talked little about Capri's news and tried to enjoy our time in California.  Honestly, even thinking about it was so incredibly painful.  I ended the afternoon dipping Capri's toes in ocean and tried hard to feel close to God, but not too hard that it would make me cry.  I can't even tell you how hard I pushed my emotions down.  I knew I needed to have a good cry, but I wasn't ready to go there yet.  The remainder of the day was peaceful and I was so grateful for my mom.  She could sense I needed to stay numb for the next day couple days and reminded me that it was ok to do so.






 So where does that leave us now? I'm grieving. We're grieving, and I think that's a process. Still trying to understand what our life will look like. Actually, I think that is my biggest flaw.  Looking too far ahead. I've been worried about canes, braille, school, and teaching her to walk. Her eyes will always be a little googly, but we're pretty confident she's some light so that's really positive!  The last few days have been the lowest for me, though. All those numb days caught up with me and it wasn't pretty, but it felt good. Real life of cleaning, grocery shopping, toddler tantrums, and trying to decide how to navigate this diagnosis is complicated.  I've described to my close friends and family the way I've been feeling the past few months--like walking up to my neck in thick mud with no sign of it clearing. Our trials are not even close to resolved, but I'm trying so hard to keep moving.  Moving towards Heavenly Father, knowing he is the only one who can help our family.  I have seen incredible miracles throughout all of this; too many to count!  I've had long meaningful chats with friends about why trials are so diffucult.  We've sat and cried about our fears and then circled around to how lucky we are too.

I've thought back to how I felt in her post op room that day and I think I'm coming out of that dark spot.  Life is hard, and it's meant to be.  Maybe that's the greatest lesson I've learned the past six months.  I'm honestly trying to embrace life's challenges, and doing it with genuine happiness.  I hope to be able to learn what I'm supposed to from Winnie and Capri.  I always worry about protecting them from pain.  Hurt feelings or hurt bodies.  I think that's natural to want to shield your children from the hard stuff.  I wish we could scoop up our girls and run away to an island and set up shop, but I'm trying to change my parenting strategy in that respect.  My job is not to teach them to run from pain or feel sorry for themselves.  I'm here to equip them with tools to deal with anything negative that happens in their lives.  It's going to happen, and it's ok when it does!  I want them to learn through their trials to be empathetic.  I want them to be kind to others who are struggling, to be kind even when someone isn't kind first, and slow to take offense.  I think they both will have a neat point of view on that.



The next step, medically, is to get her blood drawn for her genetic testing when we get back to Arizona. It's important for kids with Lebers to know their genetic mutation. There are about 20+ that have been discovered. Gene therapy is a big up and coming thing that could be used to significantly help "cure" the symptoms of Lebers. So depending on which mutation she has there could be some clinical trials we could get matched up with. I feel like that is a few years out, so we'll see! Another thing we need to do is get involved with the center for the deaf and blind. We need to arrange a home visit and see what they recommend for helping her crawl, walk, etc. The main thing I think we (I) need is access to the support groups there. It's pretty surreal and I have a hard time admitting I need to meet with support groups for all of this, but it's major part of accepting her diagnosis. 


 I'm beyond grateful Capri and Winsley have eachother.  They are two peas in a pod and I know they will be each others greatest confidantes. They are already a cute little team!  I imagine Winnie holding on tight to Capri's hand leading her around or playing on the trampoline.  Every night Winsley's prayers include "...and bless Capri's eyes."  She doesn't have any idea how much that habitual line means to us and her baby sister, but one day she will. 





Can you tell I really love when they sleep?? 



How I lucked out with the best kids and husband are beyond me. This is all I've ever dreamed of.  I'm pretty scared and I won't try and hide that.  But if there is one person that can make me feel confident we'll be ok, it's Dayton.  I think men tend to be Mr. Fix its, and that can be true for Dayton too.  But it is one of the things I admire most about him!  He puts his energy towards what he can control.  He doesn't dwell on things out of his power.  He works hard to provide and shows all of us unconditional love. I've never appreciated our differences more than now. Whether or not the world is ending tomorrow, sometimes it feels like it to me.  It's vital we have his stability in our family.  On my first "real mom day" back in Texas from our trip I lost it while Dayton was at work.  I called him sobbing and told him everything I was struggling with.  His first question was, "what can I do to help you?".  I couldn't give an answer, mainly because I was having a hard time sorting my thoughts in my own head haha but he told me to just sit on the couch and watch TV for 30 minutes to decompress. haha!  We talked for a little bit longer and I felt stable enough to hang up.  I got a text 5 minutes later.  "We're going on a double date to dinner and a movie Wednesday, lets get a babysitter."  (This is in the middle of his busy summers where he never takes off early.  Ever.) It was something I didn't know I needed, but he knew would mean the world to me.  I can't even describe how perfect he is for me.  




Our life is so full.  I am constantly amazed how peaceful things feel around here amongst the obvious chaos.  I pray we do right by our kids and hope they know how much we love them both.  To know Capri is to love her. She's the sweetest baby!  She lays down on almost everyones chest the second she's held.  I know her other senses have been heightened by this which makes her the best cuddler ever!!  She's the happiest in the morning and it has become our favorite part of the day. Her blue eyes completely melt me!  I love when she finally seems to focus on me and gives a huge smile back to me.  It's harder than you think to bond with your baby who can't make eye contact well. So when I get those smiles it's such a relief and it really does get me through my hardest days. Sometimes I sit and stare at her and I love to imagine how hard she fought to come in to the world.  Knowing what was ahead of her and being the strong girl she is, she was okay with it.  She was ready to go through life a little differently than most.   A little more of a spiritual or intuitive outlook since she won't have a majority of her sight.  I know she'll be a great friend, one to focus on someone's heart and not their appearance.  I think she knew very well that her big sister and her very imperfect mom and dad would grow from her simply being around.  She knew we needed some softening maybe and an added measure of spirit in our home.  In the nine months she's been alive I feel like we've all completely changed.  This will be a journey for everyone and we're so ready to provide the best life for her as possible.  It is truly an honor to be your mom and dad, Capri. Love you, sis.