Sunny Faye

Its taken me almost a year to figure out how to write this. I still feel like I need five other posts to follow this because it has been full of really sweet experiences.  Sunny was diagnosed November 11th, 2019 with Lebers Congenital Aumorosis and I wanted to jot down the full story here!

A little back story on our girls since it's been a while.

Winnie our six year old was born in May 2013 with extra digits, internal stomach issues, and a benign brain tumor that causes laughing seizures.  At 2.5 years old we started to really put the pieces together and found out she had Pallister-Hall Syndrome.  With that genetic testing done for her in 2015 we were able to narrow in on the syndrome and see where the mutation came from.  After testing came back, we could see that she had mosaicism of her genes and bascially she was just a special little fluke baby.  She didn't get any genetic mutation from Dayton or I.  That was a huge relief because we were already pregnant with our second baby and were hoping this wouldn't be something this baby would have.  Winnie had all her surgeries completed around 3.5 and takes mediciation twice a day for seizure control, but is so sweet, very typical and quick as a whip.

 

When Capri arrived in October 2015 there was obvious adjusting to having a two and a half year old and a newborn, but she fit perfectly into our family. At two months old at a christmas party (that full story is here) I noticed Capri's eyes shaking really bad and rolling all over the place. We took her in and they said it's most likely an eye condition and we needed to get into an opthamologist. For six months we went back and forth with doctors trying to figure out what was going on.  Finally, in July 2016 Capri was diagnosed with a retinal disease called Lebers Congenital Aumorosis that causes child blindness.

Right before her ERG at CHLA

Since then, she was put into an early intervention program through the state to get vision services and had someone come to our home every week for two years to help Capri learn how to best use what vision she has.  She has a lot of vision, more than we expected. She sees shapes, colors, faces, and we figure out more of what she can see every day.  What we know is that peripherals are hard, she trips and runs into things that are eye level a lot and really struggles with depth perception. She turns her head often to get just the right angle to look at things.  My favorite thing is when we're watching t.v. 

(our favorite is AFV) and Dayton will quickly describe each video clip for her so she can laugh with the rest of us since everything moves so fast for her to understand it.  It's so sweet. Lebers is a degenerative disease, which means her vision can get progressively worse.  We are always praying and hoping for the best.  In 2016 we did genetic testing on all of us to confirm Capri's diagnosis and figure out the exact genetic mutation she has.  Gene therapy is up and coming for Lebers so we wanted to be informed so that if there were studies or clinical trials we could get involved.  We got results back that she has CEP 290 mutation and Dayton and I are both carriers of a copy of the CEP 290 gene.  Basically, for any of our future children we have a 25% chance of having another child with Lebers.  I got really down on those stats for so long because it seemed high, but I tried to look at the glass half full and think well its a 75% they WON'T have Lebers! I think by that time, we had really just decided to be done having kids.  But as Capri approached three I felt like someone was missing.  AND I really missed having a baby around!

I didn't really feel like it was the right time then or anything but I always wanted a big family so I would bring it up to Dayton.  Neither of us were totally on board, but it was something we needed to work through. I was leaning more towards getting pregnant but I understood his concern about facing another hard diagnosis.  We always felt from when we were newlyweds that we were going to have a child with special needs so it was like a fear of feeling prepared for it happening again.  Ultimately, we needed to pray about it.  We needed to make sure no more little babies were waiting, and if there were, when would the time be right?  We prayed a lot, went to the temple, and talked it to death haha. I would periodically bring it up and we would sort of check in with one another.  So many times I would leave the temple feeling like the moment still wasn't right.  And then one day we "checked in" with one another and just had this peaceful feeling that some little baby was ready.  That was such a unique experience for me.  I usually feel answers right away or doors will close immediately.  But this was gradual.  It was a steady practice of praying and really trying to understand His will.  Why couldn't I feel settled about not having more children, but why didn't I feel ready either?  And then having a calm yes come to us was so different for us.  I made a mental note to myself: Ok Ali, this is another way you can receive answers to your questions.

We found out we were pregnant Jan 2019 and I can't explain how excited we were.  Once we felt like our decision was aligned with what Heavenly Father wanted for us, there was no doubt!  I thought about it of course, but no fear really. I don't like to categorize the decision as a risk, because that makes it sound like we were scared.  It was more a leap of faith. No matter what happened it would be okay.  We would be taken care of.

Our girls were thrilled to be big sisters and it was every reassurance that this baby was meant to be in our family.  Leber's doesn't typically manifest until two months when the nystagmus (eye shaking) really kicks in. There was no testing we could do during my pregnancy that felt worth while to us, s the plan with this baby was to soak in newborn days and see if her eyes started to shake around the two month mark.    All in all, my pregnancy was amazing! I felt healthy, strong, and had with minimal pain aside from the very end which I fully expected.

A few months before we left for the summer to Florida I was able to go to the temple every Friday.  Both my girls were in school and Friday was a free day that I didn't have errands to run and my house was more or less picked up.  The opportunity to go to the temple fell into my lap.  It wasn't really something I had to plan or a complicated thing I had to arrange with family to watch kids or get someone to pick them up from school.  It eerily felt like the time was carved out for me to have nothing else to do but be there.  Although I wasn't worried about anything being wrong with the baby I did say quite a few silent prayers and asked God what he was getting me ready for. It felt like some area of my life was about to change.  I don't remember having any stand out promptings or changes I needed to make, only an overall peaceful few months.

Sunny's birth went so well.  I went over my due date a few days which about killed me haha but once things started going it happened super quickly.  I wanted to get an epidural this time and have a different experience! I told my triage nurse that, so she put it in my notes and had me walk around for a bit.  I got back from my walk less than ten minutes later and progressed an additional 3cm from when I arrived 45 minutes before. My nurse gave me two options, "you can get the epidural and hang out, or your midwife can break your water and we can meet your baby." Well that choice was easy for me!  I needed to meet our girl!  Labor was awful.  It was short, but horrible.  haha I pushed for what felt like an hour when it was really only ten minutes. I said multiple times to my nurses and Dayton that I felt like I was going to die but when she was born it was this instant relief.  They put her on my chest and I was completely in love.  It was seriously magical and the best baby high I've had.  She was blonde (!!!!) and had the sweetest face.  I had prayed about if she was right for our family before and was so certain she was when I held her that first time. I love my new babies because you get to kiss them as much as you want. 

September 27, 2019

When we got home from the hospital three days later baby blues hit me---hard-- and I was second guessing any little eye flicker or cross eye Sunny had.  All of that is normal for a newborn so it was hard to decipher what was typical or not.   I remember my mom came over and I just sobbed uncontrollably on my bed holding Sunny and explained my worry she had Lebers too.  I obsessed over it.  I looked up videos of everyone I knew who had babies around the same time as me and analyzed their eyes to compare.  Maybe trying to talk myself out of what I already knew.  Those post partum hormones are so strong and I felt like I couldn't stop myself from worrying.

  Again, my plan was not to get any genetic testing originally, but I hit a breaking point that first week. I resolved to not be helpless.  I needed to take control of the situation for my own sanity.  If we found out for sure either way, then we could move forward, but no more limbo.  So over the next couple days I went crazy, called a million places and found a lab that would test Sunny for CEP 290.  We got a doctors referral for the test, did a blood draw, and had it mailed in with in days.  From then, it was three weeks of waiting and refreshing the lab's website literally 20 times a day.  There was some drama with getting the wrong diagnosis first.  The initial diagnosis said she was only a carrier of the gene, which is what Dayton and I are, but that didn't feel right. I  remember telling Dayton I wanted to see the hard copy of the report before we started telling people that news.  Days later when I double checked everything and had a few of our doctor friends look over everything I felt like I needed to call the lab and have them walk me through the report so I could understand. I ended up having to send them Capri's report so they could compare the genes.  The woman at the lab said she would hurry and have someone look over everything and call me back as soon as possible.  Once I found Capri's paperwork and while I waited to hear back from the lab, I called my mom to talk things out with her because Dayton was on a work call and I needed someone right that second to talk to out loud.  Then, I just started to cry because I could see the similarities with the reports and I knew what they would say.  The lab called me within a few hours back to confirm my feeling that the report needed to be ammended to be positive for the CEP290 gene.

That day was excruciating. My MIL came and grabbed the girls and I sat on the couch trying to fall asleep but couldn't stop crying.  I remember the next day I went to Target and I had this cloud over me.  I was trying not to look too mopey but I also looked at people around me and thought, wow they have no idea I got devastating news yesterday. Then I thought about how often that must be happening to ME when I'm at the store and see strangers walking around.  It was a reminder for me to look out for those who might need me to smile or be kind to them.  Dayton would call me alot when I had to run errands and check on me which is exactly what I needed. There were a million things going on in my head that I just couldn't sort so to have him ask and help me force something out cleared it up a little bit.  

I was so grateful it was a familiar disease we were dealing with.  I knew the protocol and who to call to get the ball rolling.  Vision therapy would come soon for Sunny--I would start paperwork on that. We would get to see Bernice (Capri's old vision teacher) and that was so comforting. I knew all the steps I needed to take and that was such a huge burden lifted, but I also allowed myself that first week to really let it all wash over me. I didn't hold back crying, feeling sorry for myself or push myself to be optimistic. I knew I wouldn't have these deep sad feelings forever so I wanted to really sink into it and it totally helped.

Best dad ever.  He has such a good balance of trusting my decisions as the mom, but also an intuition as their dad that I don't have.  We needed him so much to be this pillar for us.  He is always so convinced everything will be okay.  I've said before that he's a "fix it" type person, like most men are.  And I have loved seeing our differences play out.  Our strengths are both needed and they have served our family in complimentary ways.  There is so so so much more that I've learned about him and who he is through all this, but I don't even have words for it.  I just love him so much.

Telling family and friends was really difficult, but also such a relief.  They knew the whole pregnancy was such a loaded decision for us so it was a shock.  How did we have three! I never want people to feel bad or pity our girls or even us, but also it was really hard at the time.  So I had to swallow my pride of knowing we could handle it and allow myself to fall apart with the people who love us most.

Our girls knew we were getting Sunny tested to see if she would be blind so when we were waiting for results those first couple weeks Winnie would say, "Is Sunny blind? When are they going to tell us?" It was so sweet and we would just say, "I know, I hope they will call us soon.  We want to know too!"  We waited a week to tell them so we weren't super emotional and we had really sweet experiences with them. Dayton took over both conversations.  He is direct, clear and loving when he has talks with them about  important things like this.  Capri's comment was, '"Awh shes going to get glasses! And when we're in bed together she will look at me and say, "why do we have glasses!" and I'll say, "It's because we're blind!!"' haha She also brought in her cane to tell Sunny about it.  I'm so happy they will have one another, a sister who knows exactly what their going through.  "The blind leading the blind" has a totally different meaning for our family now :)


 In our conversation with Winsley, we approached things a little more gently.  Winnie made comments during my pregnancy about not wanting the baby to be blind because she didn't want to have to take care of her at the gym like she would have to sometimes with Capri. haha It's totally understandable.  We didn't really plan what we were going to say at all, like I said Dayton took over, and it was perfect.  We had a great talk about her being the oldest and how she get to help but also gets to ask for help.  It's a balance I think we'll always have to evaluate often. I never want her to feel like it is her job to be the mom.  But working well in a family unit is such an important attribute.  I felt like the spirit filled the room. I'll never forget that feeling of being devastated and so happy at once.  She loves Sunny so so much and I knew she was thinking about it alot the whole time we were waiting.  There is so much going on in her mind I don't even know about.  I hope she could feel how much we love her.  I'm so grateful for the order my girls came.  It was divine design and even at their young ages I'm already seeing so much of their tendencies as people.

I feel like I brag alot about Sunny and how easy she was/is but it's really because I feel so strongly like she is such a gift to us.  She is beyond content, sleeps well, such a cuddler, a great nurser and a million other things. I say halfheartedly that we deserved an easy baby, but I think its less about deserving (because no ones deserves a baby who screams all night--we've had one of those :)) but more about compassion from God.  And there's a difference in my mind.  My mental max was having two kids with child blindness. I have felt like Heavenly Father knew having to be up all night having to care for three kids and another life changing diagnosis would have pushed me over my limit.  I'm so so grateful for that little blessing of an easy going baby.  It really has made other things so light.

After we got Sunny's diagnosis, her eyes started to really shake around 2 months, like we expected. :) We set up vision services pretty quickly and by January we had our first visit with Capri's old vision teacher, Bernice.  It was so crazy to open the door and see her in our home again.  It's truly bittersweet because we absolutely love her but the circumstances to have her again were so hard still. She is a pro and knows exactly what to say and before the quarantine, we were working on stimulating her eyes, checking her tracking, and helping her with core strength.  As she gets older, we will assess where Sunny needs work with fine motor, contrasts, or play and adjust goals for her. We're not exactly sure what all she can see.  Since it is the exact same mutation and variation she is likely to have similar vision to Capri.  That would actually be best case scenario!  Capri's vision is great compared to so many people with Lebers so it would be great news if Sunny was just like Capri.  Sunny is so smart and is doing amazing with crawling, copying us, and meeting all her milestones.  She definitely sees light and seems to see us when we smile and I feel like she can track quite a bit.  We'll have to wait a while, like we did with Capri, to really see the scope of her vision though.

How are we doing?  Most days, we're just fine!  I realize how lucky we are that our girls issues seem to be super mild compared to other children with the same things.  I can only speak for myself, but the hardest thing lately is that Sunny presses on her eyes.  It's a really common habit for kids with Lebers to press or poke their eyes.  Maybe they do it to calm the eye shaking or that the feeling of seeing stars is soothing, I'm not sure. Capri never pressed that early on (she does it more now) so it's definitely something Sunny will struggle with because it's such a natural instinct for her at a young age.  I am constantly keeping her hands out of her eyes all day so she doesn't damage them.  That sunken or dark eyes that a lot of blind people have can come from the pressing because it deflates the fat pockets around their eyes.  That's my understanding at least.  In the day to day, I see that we live a very normal life, and our girls are fortunate to be typical in so many areas.  I think that's why I don't get down about it too often.   There is also this other part in caring for special kids where overwhelm that can loom over you constantly.  I wonder how to do it all.  I think about their their future and feel like I'm never doing enough for them to be successful.  I think subconsciously those feelings hang in the background and can spill stress into other areas of my life.

  When I think about the initial diagnosis days and the grieving process I think of the times in my life when I'm begging for comfort and answers are also when I have the most Holy encounters with God.  I don't know why that is.  I wish it wasn't that way sometimes.  For a long time, I really did not like the quote, "man's extremity is God's opportunity" It felt so cruel--like God was waiting for us to be miserable to lighten the load or be there for us.  Now that I have been at my extremity countless times, I see how his teaching has the chance to reach us differently in our desperation.   I feel him in all the good times, but something about trials makes the windows of heaven throw a life line right into my hand.  I have had the most profound instruction, light bulbs going off all over my mind as I try and understand His plan for me and for my children during our most difficult moments. I don't view it as cruel anymore, because he's there the entire time.  Daily gratitude always helps me see that. I think because I'm just human I always want results immediately and I expect things to be resolved immediately. What I have come to realize, though, is that God has immediate goodness, but not immediate deliverance. Goodness is every where we look and deliverance comes in His time.

 I know people say, "I would never wish [a certain trial] on anyone".  I would never want someone to be blind or feel the overwhelm I have felt raising my girls at times.  But I do wish I could take people inside this intimate schooling we've had as we have gone through this.  I never know if posts or things I share resonate with anyone the way I hope.  It's so personal of a journey that I could never convey how it's really changed my whole world.  I have understood things that I could have never learned without these experiences. THAT is something I would wish upon someone.  I would wish that whatever happens in life we can find a way to allow it to be a teacher to help us learn patience, kindness, loving even when it feels impossible, faith that His plan is a loving one and any other glimpse into Heaven we need personally.  There is this perfectly curated lesson plan waiting for us.  I hope that when there are times when you're at your limit that you can allow Him to teach you in a way He knows you can receive it.  We have to be intentional though. We have to be looking for it.  We have to be deliberate in calling on him, reaching out, and listening.  We need to be teachable and obedient.  It can feel like a tall order.  In the most gentle way, I do hope my girls have more of these trying experiences because it can lead them to God.

     

I've been thinking about how quickly we forget how merciful God is.  How can I go through all of these things and still when something different in my life pops up and feels so difficult I'm like, how am I going to get through this?? I still ask myself that!  How do I forget all the blessings and miracles I've seen?  I constantly remind myself, take a step back and list all the times he has held me. Truly the knowledge that I am an actual Child of God and that this all works out in the end provides me so much comfort and peace.  I don't know how I could survive without it.  It's too crushing to imagine that this is all for nothing.  And it's not just a nice idea or story you tell yourself to get you from day to day.  It's reality.  Again, I can share my experiences all day long but ultimately it's not information I really can pass on for people to understand perfectly.  It can only really make a lasting impression when you live it yourself.  That feeling of this will never get better and then suddenly things turn around, or they don't seem so bad after a while. 

  

I keep trying to think of my biggest takeaway from all of this. And I think the one that sticks out is I am loved more than I can understand.  I had a seminary teacher who would always refer to God as, "a loving Heavenly Father". He would always add "loving" to His name.  Sometimes when I'm stuck or feeling especially low I try to use that full description.  It reminds me what I already know, but sometimes lose sight of.  It reminds me no experience is for nothing.  A loving Heavenly Father gave Dayton and I a peaceful feeling NINE years ago that we would have special children to prepare our minds and hearts for our future babies.  There are countless other times where he has lightened the load we are asked to carry.  Because ultimately He is the only one that can.  He is the only one who has the world on his shoulders but asks me to hand my troubles to him.  It's never too much.  

Our sweet little Sunny.  I can't imagine not having your sunshine in our home.  I can't imagine Winnie and Capri not having you to love on.  I don't know what high school, driving, future families, or adulthood looks like for any of my girls.  I don't think any of us really know how things will go beyond today.  I do know there is hope, learning, and happy endings when we stay close to God.  I hope somehow Dayton and I can instill that in our girls.  I hope it resonates with them when we point out His hand throughout their lives. I know he takes care of everything else if we do all we can.  He fills in the gaps we can't possibly work hard enough to.