Simon's Eyes - June 2016

Friday, June 10, 2016

Simon had a great eye exam! For those of you that don't know, he has congenital nystagmus and we thought for a time he could possibly have a more serious disease OR was blind. Neither of those are the case, praise the Lord.

We love Dr. Shelley. He always takes his time to talk to us about Simon's vision, and explain best and worst case scenario. He's so kind and wise! I always leave appts feeling prepared to take on the world with a son who is very likely visually impaired.

We totally got this. Like Dr. Shelley said today, just because he can see a cheerio on the floor across the room doesn't mean he isn't visually impaired. Think about the smallest thing we can see... A speck of dust in a sunbeam, for example? There is a good chance Simon can't see that.

Those words could have been heavy, but for me, they weren't. My baby can see. He can see my face, he can see sunshine and green grass and the waves of the ocean. I remember begging that of God just one year ago.

I'm ok that he can't see dust particles. ;) It's a good compromise.

Mommy, You're Beautiful.

Wednesday, March 30, 2016

We have an appraiser coming by the house today, so in an effort to look like I'm not living out of boxes and totally overwhelmed with life, I put on makeup and a clean pair of yoga pants. I threw on some makeup, brushed my hair, and re-knotted it in a low ponytail. I felt nice and fresh, but Porter, you took it to a new level.

Sitting in our new living room, watching The Good Dinosaur and playing with your play-doh, you glance over, look me up and down and tell me (like you do almost daily): "Mommy, you're so beautiful."

It always takes my breath away, and I want to let you know how much I appreciate your observant little gestures of love. So, I smile at you, usually clasp my hands over my heart and sigh dramatically (because that's how I feel about your words) and say: "Oh my gosh, thank you so much Porter. Mommy loves when you say that."

You replied again, today: "You are. And you were beautiful last night. And you're beautiful today."

Seriously? You're THREE years old, and I can already tell what a remarkable man you're going to be. Keep complimenting the women you love - your cousins, your aunties, your grandmas, your MAMA... it's something that means so much to us, and you'll never understand how much more beautiful you make us feel when you do.

Porterisms: Jesus In His Heart

Monday, December 28, 2015

Last night, when Porter and I were rocking (unsuccessfully - it was a long night) before bed, we were singing Jesus Loves Me, and I said: "did you know Jesus lives in your heart?"

Well, I hadn't noticed that Porter had the hiccups, and he asked where his heart was. I went about trying to help him feel his heartbeat - and he found it, pretty amazed. Except for the next time he hiccuped. It was a particularly violent one, and he looked at me terrified and said "Mommy, I think Jesus is trying to get out!"

Simon Pierce: 44 Weeks / 10 Months

Friday, November 20, 2015

I'm in shock that we're 2 months away from your first birthday, little man. You have four teeth and are teething again at this very moment, you crawl at like 95 mph, you are the most determined and strong-willed little boy in the world. You pull yourself up to stand on and against everything you can, and your weeks away from walking, I can feel it. Just the other day, you maneuvered your way on top of your new musical seat - laughing proudly at my horrified expression and banging LaLa on the head in victory pats. Also, you climbed up the stairs for the first time, too.

You love:

grinding your teeth
when your brother plays with you
the piano in Porter's room
yanking on the Christmas lights
Lennon's food and water
Being held
trying to hit the keys on my laptop
playing with the handles on the fireplace; they make noise
when I fake cough
dad's beard
your paci
puffs! finally!
the laundry room

You hate:

sleeping. you're way too busy for that mess.
when people walk by you without picking you up
when you get stuck or lodged up against something
being patient
diaper changes

One of my favorite things about you is how you smile with your whole face. I hope you always have that beaming smile that lights up a room - you make me so proud, and you bring me back to center when I make eye contact with your sweet face. I can't believe your mine!

Simon Pierce: 9 Months Old

Saturday, October 24, 2015

This photo is the epitome of you.

Your eyes are so special. They gave us a lot of sleepless nights in the first few months of your life, and sometimes I fight feelings of sadness because it seems like your first year of your life has FLOWN by due to the scary health journey we were on with you from when you were 2 months old: time stood still, and time disappeared... all at once. But, now, we look into your eyes and seriously can see all the good you are. All the little intricacies of you. You are such a sweet, calm, wonderful soul.

Your entire face lights up when you make eye contact with us. You are pulling yourself up and standing against EVERYTHING - you want to walk so badly. You are drawn to the TV system and wires (just like your brother). You're a mama's boy through and through, and I love it. When I sit you down you have meltdowns... you want to be on me/with me 24/7. You popped 4 teeth through in two days (which meant a spiked fever and a few sleepless nights for us, it was pretty intense). You are just now starting to show a little interest in food, but barely. You're content just nursing.

You're healthy as can be - the only cold you've had was from your teeth.

You army crawl around the entire house, exploring every nook and cranny, and when you hear us coming you shriek and try to "take off", your version of running away. You laugh hysterically when we sing Jesus Loves Me.

You say "Mum-mum and duh-duh", and blow raspberries and grind your teeth - ugh. That can go away anytime now!

We're over the moon obsessed with you, and can't imagine life without your sweetness. You are kind and gentle and loving, and we can't wait to see the man of man you're going to become.

Porter - October, 2015

Tuesday, October 6, 2015

Bottomline: you're 2 going on 16.

Last night I was running some things out to the car, loading up after watching Monday Night Football at the Jones's. You wanted to come, but I said no (it was dark and the car was close to the road, and I had my hands full), so I asked you to stay.

You said: "Ok, mommy, I wait riiiiiight here for you." So, you opened the door for me and watched me leave. As I was heading back, I heard your sweet little voice echo "hey mommy? HEY MOMMY?" I answered you back, and you said: "There you are, be careful ok? I right here. You need any help?"

It was the sweetest gesture. I wanted to remember it forever - you and your huge heart.

Today, as I'm writing this, I just coughed... and you blessed me. :)

When Simon started fussing a few minutes ago, you ran over to hover over him, and started singing Jesus Loves Me, because it calms him down.

When I was going to run upstairs to make you breakfast, I wanted you to stay downstairs... and you told me: "No, no, mommy. I don't want you to fall down the stairs. I come wif you, and hold your hand, ok?"

Today, we were watching Bobbie Flay grill some meat, and I didn't think you were paying attention. You were playing Play-Doh. But, then you looked up at me and said: "I like dis show, it's cool for daddy. Let's save it." I can't believe how observant you are!

Driving past Auntie Jess's house the other night, you announced "There's Auntie Jess's house!" I am just shocked you recognized it! We were even coming from the opposite direction.

You are currently obsessed with:
  • Drums
  • MineCrap (Mine Craft), although you don't know what you're doing
  • Watching PlayDoh tutorials on Kids YouTube
  • Pumpkins. You got a bunch of your own, and you call them your "pumpkin patches"
  • Saying "Oh my gosh" all dramatically
  • The movie Monster House, Into The Woods (you love the giant and stomping around saying "FEE FI FOOOO FUM"), and Mary Poppins
  • Your hoodies, which you call "neighborhoods"
  • Grandma & grandpa
  • The Wipe House, and particularly, Gary... our friend who is doing the electrical. "Where's Gary?" every time we drive by, haha
  • Fruit Smacks = Smoot Smacks
  • Foods: applesauce, cheese, waffles for breakfast, peanut butter and brown sugar "smammiches", cucumbers, chicken nuggets, guacamole, broccoli (you call them trees), and you always steal bites of my salads. You really wanted to like steak, but the other night it was too tough for you - so you chewed and chewed and chewed and spit out every bite. Haha
  • GUM, which you always call "bubblegum"
  • Taking care of your baby, which you named Ava. You put her to bed, and rock her, and shhh us when she's sleeping.

Unpublished Thoughts & Answered Prayers

Saturday, September 26, 2015

I am posting this because I wrote it during a really dark time in my life - I apologize for how this is put together - it's sort of halfway written; rambling. I want to publish it because I want to remember how far we've come, and how God answered EVERY ONE OF OUR SPECIFIC PRAYERS. He is so good... we've come a long way. Still have a ways to go, but we're setting off confidently.

* * *

Sometime in March, 2015:

For some reason, I feel like if I don't talk about it - it wouldn't be reality. We wouldn't be facing the scariest challenge of our lives so far. But, I want to remember, so I'm writing this down.

About 6 weeks old, I noticed Simon wasn't really making eye contact. Granted, it's early to make that determination... call it crazy mom intuition, but I just felt uneasy. I was frantically looking for any opportunity I could to cause him to flinch, or focus. Something wasn't right.

I shared my concern with Paul, and he told me to relax - like normal. :) I am notorious for overreacting.

Days later, Paul IM'd me at work that he was freaking out about Simon. My heart sank. So... that means he understood my concern. That means I was right to be worried. Paul never worries.

That means something was wrong with our precious boy.

My stomach aches. My heart aches. It's a haunting feeling, to feel like your insides are literally spiraling out of control and you are choking on your pulse. I wanted to put my head between my legs and pass out.

We took Simon into convenience care... ignored the puking kids and sick bugs floating around. We were frantic. I would take the flu bug any day over the haunting fear that was floating around the backs of our minds.

Is our boy blind? I just wanted the on-call pediatrician to tell me I was being a silly mom. But she saw my concern - Simon's eyes weren't steady, weren't focusing. They weren't following her around the room. He looked up a lot, and around... they shook back and forth, slight and steady.

Nystagmus. "Don't Google it," she smiles kindly.

Yeah, right. It was the first thing I did when I got to the car. Brain tumors, neurological issue. Some kids lead a totally normal life. Some kids can't see at all.

Brain tumors.

I cried and cried and cried on the way to the chiropractor - the only other place we know to go when we're concerned about our health. The on call-ped had told us that she wasn't too concerned, but to let our pediatrician make the call at our upcoming 2 month checkup.

We had to wait several days. Dr. Grubb said he was tracking, but that he'd like us to see a pediatric opthomologist, Dr. Shelley. He was really good at what he does. Dr. Grubb was "baffled". His eyes look normal, no physical signs of issues. He took a video to send to Dr. Shelley, and then set us up to be referred. Told the referral coordinator that if Dr. Shelley didn't have any appointments soon, he would call and make sure we got in.

I didn't like the extra attention. I sobbed as the referral coordinator set up our appointment.

My boy may never see my face. Or his brother's face. He'll never see the ocean or watch the sun set, or watch a football sail into the endzone for a game winning touchdown. How was this fair?

Paul and I went out Friday night, a date-night we'd planned midweek that our family desperately wanted us to keep. To be together. To cope. To pray. To stay strong.

If you were a stranger next to us at Maxwells, you'd think we were breaking up. We sat in the corner booth and I cried. Paul stared ahead blankly. I looked up blind kids on Instagram when I excused myself to the bathroom. I still remember the sights/sounds of that night so vividly.

A jazz musician played. I noted in my head that Simon would be able to enjoy music, at least. Defeatedly. Like, it was some sort of consolation prize for his life.

I kept searching hashtags for blind kids, to see if they looked happy. I just want Simon to be happy. Paul told me - after we ate in silence and exchanged quick looks of fear and comfort between tears and attempted smiles - that Ray Charles talks about how he has experienced life and things in a way that no one else ever will; He doesn't feel cheated because he can't see. I cried, and cried.

Simon - if he's blind - won't know any different. He won't feel like he's missing out, because he doesn't know that there's anything more. I can't wrap my mind around this, it's like trying to comprehend infinity. God's infinite love - a literal endless love.

I'm selfish. I'm heartbroken to think about Simon never getting to look into the eyes of his children. I'm thinking about the grandkids I may not get, or the experience of watching him watch his bride walk down the aisle. I'm selfishly mourning the things that I believe are what life is all about.

But, what is life?

Life is what we know, what we comprehend. I can't comprehend having no sight, because I have it. It's like trying to think of the world if God hadn't spoke anything into existence. A vast, blank space. No time, no living thing, no humanity. I can't wrap my mind around that, just like I can't wrap my mind around a life with no sight.

Paul doesn't want me to go to worst case scenario, but it's where I go. I felt a painful stab in my chest - like maybe God wanted this to be my story because I don't feel equipped to carry this. I'm not nearly the mother that another woman is. I know so many people better suited to walk through this - not me. I'm a mess. I'm selfish and emotional and anxious. God, you know me. You know my load, you know my heart... I would break.

I was drowning in what-if. God told me to focus in - for me and Simon.

I deleted social media from my phone. No comparison, no worry, no aimless scrolling and yearning for the unknown.

Church that weekend - Saturday. I'd reached out to few people, so only a few knew what was happening. Went down for prayer during worship with Ashley and Sarah. Cried and shook and felt God literally reach down and hold me - the most powerful comfort I'd ever felt. Went back to my seat in time to hear Paul choke up as he sang. Kept my eyes closed, because I couldn't watch him lose it on stage. Felt a hand on my back, opened my eyes, and saw that Pastor and Hobie and Andy had joined Paul on stage and were practically literally holding him up. I audibly sobbed. Leon took over to lead "Glorius Ruins", and my precious husband embraced our pastor on stage while his best friends laid hands on him as a representation of prayer for our precious son.

Matthew 5:11. We are not alone. Paul was not alone.

So much prayer for us and our boy.

I felt such a sense of peace heading to our appointment with the opthomologist appointment with Dr. Shelley - we just wanted to know if he could see.

Dr. Shelley said no visible damage to his eyes, which is great news. No undeveloped nerves, or disconnected retinas, or scar tissue. That was great news. Especially after dilating his pupils and holding him down screaming between my legs to prop his eyes open. Dr. Shelley said he didn't like that his eyes were shaking, but it was good news that it was nothing physically wrong with the design of his eyes that would have been a dead end from the start.

He is referring us to have an MRI in a couple months, so we can rule out or identify neurological problems. A couple months, so Simon can grow and get older and his eyes can mature. He said it was good news that there was no permanent, non-fixable damage. Paul asked if he could see, and he said "Yes, Simon can see... just not sure how well yet." He also said that his eyes can see. But he isn't sure, neurologically, if his brain can receive those images.

But, we're holding onto that with all we have. Simon's eyes can see.

Now, praying more. CLEAN scans when they happen, and ONLY MILD nystagmus. His eyes don't violently shake, they wander - so we feel good and confident. We can deal with nystagmus. Believing for NO CORTICAL VISION IMPAIRMENT... where his eyes see, but his brain doesn't communicate the images. However, if that's what it is - oftentimes, vision improves with age, so that's a great thing. If it's CVI, we pray for that scenario. Mild impairment, and improvement with age.

We're believing in faith that this problem will fix itself within a couple of months, and doctors will still be baffled.

Simon is not blind.

We are seeing Dr. Maxwell, a cranial chiro, to see if he can help in the meantime. Simon gets so much better with adjustments, I'm confident that this is something fixable here - and this testimony will be amazing.

I would love to be able to stop shoving my hand in my boy's face to make me feel better, to assure me that he can see. He flinches. He follows us around - is he following sound? Sometimes. But other times, I feel confident he can see ME. He smiles AT me... not toward me. I feel like he can see something, and that is all I'm praying for. But, even if he couldn't see anything... God has me in this place for this reason. I am Simon's mama, and He couldn't have given him a better one. I will spend the rest of my life loving and supporting and guiding that boy through life, and will do it with a smile. I'm so grateful. I'm so thankful to have every single day and hour and minute that I have on this earth, with my beautiful family. If his vision isn't the same as mine, I will beg him to teach me how to experience the world like he does.

I have so much to learn.

I will cherish our story, and live a life that glorifies God.

I will not dwell in what if.

I will not worry.

I will not be anxious.

I will remain confident in this - I will see the goodness of the Lord ALL THE DAYS OF MY LIFE.

Life hurts so bad, but God is so good.

I hate putting some of these negative thoughts/words down on paper, I don't want to give them power. But I want them to be remembered so I can smile about this in a couple years when I'm watching my boys play together happily.