stats | 21 lbs (entirely in 18 month clothes now)

eat | 7- to 8-oz bottles, some solids. we’re working on getting you to eat solids more frequently, but you’ve been sick most of the last month! in fact, you’re sick again today and just want to sleep in your bed all day. :( but when you’re healthy, you love the usual: eggs, salami, ground beef, avocado/guacamole, blueberry & purple carrot teething biscuits, veggie straws, and green pea crisps. you’re finally close to learning the pincher grip, and are starting to pick up food with your hands.

sleep | you aren’t the best sleeper. we still have to dream feed you (what?!) or you’ll wake up several times at night for hours at a time. (you just talk to yourself for an HOUR — yes this drives Mama craaaaazy — and eventually start crying and fall asleep again.) you haven’t really been on a schedule since you’ve been sick so much lately. but I try my best to give you a nap from 9:15-11:15, and then from 2:00-4:00. you think 6am is a good wake-up time, but we’re trying to teach you 7am is better. ;)

play | you love to play with your brother’s toys! he loves to take them away from you, but we’re working on that. :) it’s incredible — in the past month since you got glasses, you’ve started sitting up AND crawling! you’re scooting/army crawling everywhere. your favorite places in the house to go are the vent by the front door (it makes a scratchy sound you like), and the back sliding door to the backyard (you love to play in the curtains). you’ll play peekaboo and crawl around the couch with Jack. you also love to scoot all the way to the kitchen to find Mama’s feet. :) You’re quite curious these days. you also grew two teeth on the bottom!

Owen, it’s incredible how much glasses have changed your life. I know you still can’t see perfectly (and never will), but magnifying things sure has been good for you! We’re so proud of you.

Little Owie just got glasses! I was so worried he wasn’t going to keep them on (because the past four months have taught me he pulls off hats and sunglasses and it’s a losing battle) but the second we put them on he was fine. He really doesn’t touch them unless he’s tired or trying to rub his eyes. It is AWESOME and I feel so grateful that the transition was easy for our family.

So let me back up a little bit here. Last year when Owen was diagnosed with albinism, we saw a pediatric ophthalmologist. And from day one, I did not like her. I didn’t like how she delivered the news, or how in our second follow-up appointment she still didn’t have answers or a plan for us. I just didn’t feel comfortable with her lack of involvement with Owen’s vision and nystagmus (where his eyes constantly move back and forth involuntarily).

We decided to switch insurances and go see Dr. Granet, who is a leading pediatric ophthalmologist who specializes in nystagmus. He is wonderful and I left the appointment feeling so uplifted and in charge of Owen’s healthcare. I really feel comfortable with his diagnosis and feel like we have a “game plan” for the next year or so.

Step one of that game plan was prescribing glasses! His previous eye doctor told us she couldn’t tell us what his vision was (she never even checked), but the first thing Dr. Granet did was check his prescription (+2.5 and +3, and it might go up). I have to admit, my jaw dropped a little when I heard he was getting glasses. I had considered it before, and told myself, “He’s going to need glasses”, but I didn’t think the time would be now! I just didn’t mentally prepare myself that for the rest of his life, he will wear glasses. It has really struck me the past few days that we have hit yet another turning point in Owen’s life — before glasses and after glasses.  Before we knew he had albinism and after we knew he has albinism. Before he could see my face and after he could see my face. His life in my eyes is so segmented into periods of happiness and despair.

Luckily I feel like glasses have come a long way in being accepted in our society (especially among kids) but it is still quite unique to ever see a baby wearing them. We get all sorts of comments in public. Most people just oooh and ahhhh about how cute he is. I think the attention is expected (honestly, I would probably do the same to someone else’s baby in glasses) but I do worry that they see his nystagmus and wonder about it. And I haven’t quite figured that one out yet. I am so afraid of hurtful comments when he gets older. However, favorite comments (meaning the funniest ones that we laugh about because we get them over and over again) include people telling me he looks like a hipster, as if I put glasses on him just as an accessory. ;) I am also told, “he looks so smart!” all the time. Yes, cashier at The Habit, my baby is automatically smarter than yours when he wears his glasses.

Baby Owen, I am so glad you can see so much better with your glasses now. What a wonderful blessing we have as a family to be in a position to be able to help you see better. I just love that we have so many resources available to help you — please don’t ever take that for granted. We are so blessed. (And let’s be honest here, you are so cute!)

>>just want to record on the blog my thoughts that I posted on instagram immediately after our appointment: 

dr. granet was just as wonderful as everyone made him out to be! he checked owen’s prescription right away and tomorrow we’ll go in and order glasses for the little guy. they might help significantly or they might help just a teeny bit, but we’re grateful to be headed in the right direction to help him see better! he is double farsighted*, which surprised me. dr. granet also explained nystagmus in further detail to us, which was really, really helpful. it doesn’t bother owen at all (his brain compensates for the movement and makes it so he doesn’t even know his eyes are moving) and it will just mean he might process things a tiny bit slower because his eyes don’t “see” as fast as our eyes do, because they’re constantly moving. we also confirmed his right eye is starting to turn inward (strabismus) so we’re optimistic that the glasses will correct that. a light bulb went on for me when I realized it’s not just poor vision that owen struggles with, but a combination of nystagmus (where his eyes shift back and forth uncontrollably) and photophobia (where he is ultra-sensitive to light and glare) as well. put all three things together and it’s a handful! but we’ve got a game plan and I feel so good about how things are going. #owengrows

*I think this means he is twice as farsighted as other babies his age. I expected him to be nearsighted?

stats | 19.5lbs, 28″ (outgrew his 12 month onesies and is now in 6-12 month pants and 18 month onesies!)

eat | I still don’t feed you solids on a routine yet. I’ll feed you bits of food here and there, and you seem to like it. You just don’t reach for them, but unless you just had a bottle, you rarely turn them down. You don’t like purees, except guacamole. Somehow you know that’s supposed to be eaten with a spoon. ;) Favorite foods include scrambled eggs, avocado, banana, chicken, sweet potato, and puffits. Oh, and you love cookies, too. :) Still drinking about five 7-oz bottles a day, though some days it’s less than that.

sleep | still sleeping great at night (except the occasional 3am wake-up call…what are those all about?) but taking short naps during the day. I’m lucky to get an hour out of you for your morning nap, and 40-minutes for your afternoon nap. You do sleep in the ergo, though, if we’re out. You are so snuggly, little Owen.

play | you just got glasses! everyone calls you a little hipster, especially when I put you in a hat, too. (And we also get a lot of, “wow, he is such a smart baby!” yes, yes he is.) +2.5 and +3 for now — that prescription might go up in the coming months. I was so worried you weren’t going to keep them on (because we’ve battled with your sunglasses for the past four months) but you don’t touch them! we will get you prescription sunglasses soon. I love that you can see me from about a foot and a half away, not just 8″. :)

You love playing on your tummy, and inspecting toys very closely before putting them in your mouth. You’re really close to sitting up all by yourself but it doesn’t seem to be a skill that you’re itching to master anytime soon. So when I set you on the ground sitting up, you roll onto your tummy right away. I think you like to be closer to your toys.

You really have come out of your shell lately, little Owen. You’re such a delight to be around, and even though it isn’t the easiest to make you smile, you are really very sweet and easy-going. You love to give kisses (big, open-mouth kisses on my cheek, where you grab my face and hair) and hugs. I think your favorite person is your brother Jack — you light up when you see his face. He makes you giggle the most out of any of us.

Love you, little Owen. Keep growing big and strong, and the world is yours to conquer.

owen, you are 6 months old! this photo is you in a nutshell. when we sit or stand you up, you’re always looking down to try to see things. :)

stats | probably 18lbs, 28″

eat | five 7-oz bottles a day (went from every 4 hours to every 3 hours again), plus any bits of table food I give him. this kid’s favorite food is eggs! he sits on my lap and I feed him my leftover breakfast a few times a week. the other night we were at Burger Lounge and I started feeding him some leftover ground beef from Jack’s hamburger. he loved it so much that TWICE he turned around and gave me the biggest, widest grin. (that’s really, really uncharacteristic of him – he’s not a big smiler, especially when unprovoked. I’m still in shock that it happened at all!) we’re working on helping him learn to sit up so that he can eat real food on a regular basis. he isn’t a fan of purees, but seems to do really well with regular food.

sleep | it took a few nights but I weaned him off the binky a couple of weeks ago. he is sleeping through the night again, hooray! he doesn’t wake up screaming five or six times a night because his pacifier has fallen out. he isn’t a great napper — well, he isn’t a long napper, I should say. He will nap for about an hour, four times a day. but he’s easy, because I just lay him down in his crib and he falls right asleep.

play | we are working on teaching him to sit up, but he doesn’t really express an interest in it yet. he loves his play gym, ceiling fans, being tossed in the air, snuggling, rattles, bright contrasty colors, his stuffed fox Freddy, and books. if it’s nap time and we are out, he will fall asleep on my chest in the ergo baby carrier. he is generally a really easy-going baby, and only really cries if he’s hungry or we are outside. he’s such a pleasant little guy and though it takes a lot of work to get him to smile, it brings a lot of joy when he does!

Amira Gray snapped some pictures of our family recently, and I am just in love with them! Kudos to her — Owen acted up the entire first half of our session, and Jack was a little snarky the second half. They still turned out fantastic and I am so glad she was able to capture our family. We included Amelia by using a giant pink balloon. :)

Here are some of my favorites:

Amelia, meet your little brother Owen. Owen, meet your sister Amelia. Oh wait, you’ve already met her before you were born, haven’t you?

Over the Thanksgiving break, we traveled to Sacramento. On the way home, we made a detour through the Bay Area and stopped by to see baby Amelia. We brought her seashells and seaweed from our beach, and a succulent instead of flowers, because that’s all that I can seem to keep alive in our new house. ;)

It’s a weird feeling, bringing your new baby to visit your dead baby. I don’t know if it’s bittersweet or happy or what. But I realized that it isn’t as painful to visit her when I have a new babe in my arms. It broke me a little when I was newly pregnant and leaving her to move to San Diego last year, but now that Owen is here that pain has subsided. I don’t wish she were here instead of Owen anymore. I didn’t go to the cemetery with the same family she left us with. I haven’t forgotten her, but we’ve learned to live life without her.

I still think about you, Amelia. Every single day when I load the boys up in the car, I think to myself, “there should be a third carseat back here.” But there isn’t. And every time I see a little toddler girl with blonde curls, I picture you in our family. I think of the pictures you would have drawn me and the dolls we would have had around the house among the cars and airplanes. I think of you when I bathe the boys. I think of you when I do the laundry. I think of you when I learn more about albinism. And I think of you when I’m sitting in church. Miss you, Amelia, and all that you could have been.

(grainy grainy grainy, but would you look at that face? sweetest little baby.)

We asked Jack if he wanted toys for his birthday, or a trip to Disneyland. There wasn’t a doubt in that boy’s mind that he’d rather go to Disneyland! I love that my family usually chooses experiences over gifts, because that’s where the memories are made. :)

Our trip started out pretty rough, with lots of tears from baby Owen. Owen’s albinism means two things: first, the sun is bright and blinding for his sensitive eyes, and he really just hates being outside because of it. And secondly, he’s higher-risk for skin cancer because he has so little melanin in his skin (which means it doesn’t process sunlight like our skin does). So keeping him covered and out of the sun is really important. Have you tried keeping a hat AND sunglasses on a five month old baby?! Ha. We have a sun cover for the entire stroller, but it isn’t enough to fool the kid. I kept him in the Ergo baby carrier for some naps, but he really just struggled and fought us most of the morning and early afternoon.

One thing that made our experience much better was that Disneyland caters surprisingly well to disabilities, and albinism is no exception. By going to City Hall, we were able to get a pass that let us either skip the line, go in through the fast pass line (even if we didn’t have one), or be brought to wait in line inside instead. This made things so much easier with Owen! We kept him covered from head to toe, but it’s still so hard to keep him out of the sun. And even in the shade and overcast days there are harmful UV rays, so we really wanted to spend as much time inside as possible. We didn’t use it for all rides, but it definitely came in handy to help us keep Owen out of the sun.

And around dusk, we boarded “It’s A Small World” (decorated for the holidays!) and little Owen just lit up. He became the baby we all know and love! He squealed and smiled at the lights and music, and really enjoyed the rest of the night. It made me cry — I just love this little boy of mine so much and it pains me that he misses out on so much right now. But it also makes me extra joyful when he is able to enjoy the world around him. This kid is already teaching me so much. :)

Happy Birthday, Jack! (A little belated, as his birthday was November 2.) Jack is FOUR now, can you believe it? They say it goes so quickly, and in some ways they’re absolutely right.

If you know Jack personally, you know he has only the best intentions. He wants to please everyone around him and his biggest concern is having fun! He is loving and kind and obedient. He always tries to make life happy for all of us, and always has the biggest smile on his face. His laughter is something that if you’ve heard it before, you can hear it in your head when you see a picture of him.

Oh Jack, how I love you so.

His speech is coming along really great! He was recently evaluated by his speech teacher to speak (legible to everyone else) 5-6 word sentences! This is HUGE for us — just a year ago we were still trying to get him to say words like “ball” and “car”. He said basic sentences (the same rehearsed ones) like “I yuh you, Mom.” and “I see Anson baby! Baby happy!” And today, a year later, he’s able to say funny things like, “There was a dinosaur in my room. The shadow right there is a dinosaur! Do you see the little dots on the wall? That’s a happy dinosaur. We need to pray to make the dinosaurs go away.” We’re still working on past-tense and present-tense (he tends to say things like “I did play on the slide at preschool today!” and “I did color with Miss Connie.”) but that will come in due time. Right now it’s just really exciting to have a buddy to talk to all day!

He loves to eat, just like any other boy (or kid?). His favorite food is eggs, and it’s an especially good day for him when I dye the eggs green with pureed spinach. ;) (His favorite color is green. Some kids have a favorite character, but we’re not into characters at our house. Instead, everything has to be green.) He also loves greek yogurt, and would eat a peanut butter & honey sandwich (with the “green” bread – Milton’s organic seeded bread comes in a green package) every single day for lunch if I let him. And usually I do. ;) He also really loves to juice lately! He always asks for more carrots and more kale. LOVE my little veggie-eater. He loves broccoli, edamame (he’s been known to eat almost half a package before we cut him off!), carrots, hummus, cantaloupe, pineapple, (sometimes) strawberries, and beans. Oatmeal is a favorite, but admittedly it makes his tummy hurt sometimes (I suspect a mild allergy to it for he and I). And just like any normal kid, he loves ice cream and brownies and all kinds of sweets. Except packaged ones – I think because I’ve never bought them, he never developed a taste for them? He hates gummy candy, fruit snacks, and fruit leather. He could eat bunny crackers all day long — they’re his special treat when Owen has an especially long doctor’s appointment or we go to Sea World. And like most kids, some meals we really have to encourage him to eat, but “take five big bites and then you can be done!” usually works. :)

He, just like most boys, loves cars and trains and airplanes. If it has an engine and wheels, he loves it. Lately he’s been REALLY imaginative, which is funny because for the first 3.5 years of his life he wasn’t at all. I was wondering if he was ever going to play pretend! He builds with his legos every day, and has quite the collection. (Forever grateful to Tyler’s old boss who gifted us their legos when their son outgrew them! They’re the favorite toy at our house and will be for many, many years to come.) He’s always building airplane-tractors and trailers and firetrucks. Lately he’s been walking around with his arms spread out and saying, “I’m an airplane! See my lights, Mommy? See the lights on my hands?”

We don’t watch much TV, but his favorite shows/movies are Chuggington and Planes: Fire & Rescue. He is also really into Little Einsteins but we don’t get that channel anymore so Mommy cut him off from watching the same 6 episodes on repeat. ;) It’s funny because most kids totally zone out in front of the TV, but Jack actually learns so much from what he watches! It’s really helped his vocabulary and has expanded his view of the world around him.

I feel like we’re in the golden stage right now where Owen isn’t mobile yet, and Jack goes to preschool twice a week, can go to the bathroom completely on his own, can take a shower/bath (almost) completely on his own, can (almost) fully get dressed by himself, and can help out around the house with chores and cooking. He can even fill up his own water cup at the fridge now. What does he need a mom for again? :)

I feel like all parents say this about their kids (and they should!) but Jack is seriously such a joy to be around. The phrase I’d characterize him with this past year is, “Oh! I have an idea!” (and spoiler alert: the idea usually involves a rope, haha!) He’s a little ball of sunshine, and now that I’ve learned what “type” he is, I find there are less tantrums and less frustration from both of us when I remember and cater to what he needs. (The book The Child Whisperer really helped me — before Jack learned how to talk, he was a type 2 sensitive child, but once he started talking he blossomed as a type 1 fun-loving child. I was so confused and didn’t know what happened to my quiet little boy! He’s still a mix of both, but is dominant type 1, which means I’ve learned that in order to get things accomplished — like picking up toys or getting dressed after bath — I need to make it fun for him. Life changer.)

What a blessing it has been to have you as the oldest child in our family, Jack. You’ve been through a lot, and still have a lot left to go through. Your siblings have needed and still need so much love and support from you, and you are more than willing to give. I love that you don’t have a mean bone in your body. You want the best for everyone — recognize what a beautiful gift that is. Love you, honeyman.

stats | 17.5lbs, 28″ tall

eat | nothing’s changed here. you eat a 6-oz bottle every four hours during the day. I’m thinking of starting solids on you because I think you’d find avocado just as enjoyable as I do.

sleep | you still sleep all night — but I wouldn’t necessarily call it sleeping. more like you can make it from your 10pm dreamfeed to 7am without eating. but lately you’ve been quite chatty in your bedroom at the strangest hours of the night. so this morning I decided your binky had to go — I am tired of it falling out and you waking up in a panic! we shouldn’t be losing sleep over such silliness! I feel like I am sleep-training you all over again. Mama is tired.

play | you recognize mama and daddy’s faces now! it’s still the most exciting thing that still brings tears to my eyes. you love toys — the jumperoo (it’s a dang monstrosity, but you love it!), Jack’s airplane, wooden teethers, and — wait for it — blankets. you are constantly shoving fabric into your mouth! Jack does this still as a four year old, so I suppose it’s only fitting. you’re still super snuggly, and will still fall asleep in my arms if needs be. you’re fantastic at keeping your sunglasses on (high five!) when I’m holding you, but as soon as you’re in the carseat or the stroller, you rip them off. you love to talk, and if you recognize a face close up, you love to smile at it. sometimes you even giggle. daddy has nicknamed you “oh-wee”. you drool a lot these days.

love you, my little fair-skinned baby.

What a crazy journey this has been. Motherhood has been so kind to me and yet so unforgiving and relentless at the same time.

There are moments in my life — little slices of time, rather, that I will never forget. The first (and only) time I was sent to the principal’s office. Sleeping on the floor of the bus for marching band. Being married and sealed to Tyler. Being in labor with Jack. Hearing Amelia’s awful diagnosis while she kicked inside of me. Hearing Jack speak a two-word phrase for the first time. Watching Amelia die in my arms.

Two months ago I experienced another snippet of my life I’ll never forget — we sat in the ophthalmologist room and learned about Owen’s albinism. I left there confused and scared, not knowing whether the baby in my arms would ever see at all.

I remember crying the entire week prior to that appointment. I slept about three or four restless hours every night leading up to our appointment. I knew something was wrong with his eyes, but I didn’t know what. Don’t they tell you the worst part is not knowing?

And then we finally knew, but there was nothing we could do. It’s a waiting game, and you hope it gets better.

This week, it did. Owen can finally see me.

I cried the first time it happened, and I’ve been in tears ever since. Every single time my baby sees me I just can’t even hold it the joy I feel. (And he can’t either! Words cannot even describe our delight.) It’s a moment that when we lock eyes, still feels like the first time, every time. Sight is something I will never, ever take for granted.

We’ve tried our best to treat Owen like a normal baby (because he is!) but there are also exceptions to the rule. He doesn’t see as well as other kids. He can’t see you smiling at him from the pew behind us. He won’t laugh when you stick your tongue out at him and make a silly face. And all of these are still true today. He’s the same and yet so different than other babies.

But at almost 5 months old, now he sees me, he knows me, and he loves me. He reaches out his big bear paw hands and grabs a hold of my face to give me the drooliest open-mouth kiss. And if I’m really close (and have a bit of luck on my side), he’ll catch my eye and smile at me. He sees me smile back at him, and that makes him start to giggle. It turns out he’s just as excited as I am to have a friend.

Do you think Jesus wept tears of joy along with the people he healed? I didn’t even heal Owen but I feel like I’m experiencing just a sliver of that joy that Jesus might have felt as the bystander to a miracle. It still amazes me every. single. time. There are tender mercies every single day with this kid. Just when I don’t think he can, he proves me wrong.

These moments are so delicate and sacred to me. I feel so blessed and humbled that I get to experience Owen’s milestones from such a unique perspective. They aren’t always on time like they “should” be, but when they do come I can tell you they are TEN TIMES SWEETER.

(I’m not the best at recording Owen’s milestones here on the blog…can I blame it on his 45-minute naps? But I make sure each and every one is on my instagram — follow me @delightedtobe, or click on the camera logo on the left side of my blog.)

stats | 17lbs(?), 27″

sleep | you still sleep all night long, from 7pm to 7am. We dream feed you around 10:30pm and I love the extra cuddle time. :) You did go through a period (and are just coming out of it still) where you woke up at 4am and talked to yourself for a good two hours! Loud, loud talking. You are a lot more vocal than I’d like you to be in the wee hours of the morning but usually a binky quiets you down for a bit until it’s time to eat at 7am. Naps…eh, we’re getting there. You still prefer 45-minute naps most days, and I prefer 2-hour naps. So we’re meeting in the middle somewhere. On the days when you actually take solid 2-hour naps, you only take one morning and one afternoon nap. On the days when you catnap, it’s a little crazy. Working on it!

eat | HOLY GROWTH SPURT! You are 27″, did we mention that? You’re in 12 month clothes, and they aren’t baggy on you. But I still call you “little Owen”. We’ve tried to feed you some solids. The first night you couldn’t quite get the hang of the rice cereal, but still wanted more and more. And every time we’ve tried since then you aren’t interested. Your body is too big to sleep soundly without the help of solids, but it’s also not ready developmentally. We’re excited for when you can see better because maybe then you’ll want real foods like avocado and banana. We spaced your feedings out to 4 hours apart during the day, with a 6-oz bottle. (This is especially exciting because Jack never, ever went 4 hours no matter how hard I tried.)

play | you still love kisses. You love being gently tossed in the air, and snuggled on our shoulder. Holding hands with you never gets old. You are barely starting to see things – the lights on your play gym, the zig-zags on the rug, and maybe the toys dangling from your play gym. But definitely not people yet, although you always smile when you hear your brother Jack close by. I’m kind of in a rough spot right now because I don’t know what you want to do – you’re getting bored of the play gym but don’t seem ready for anything else because of your low vision. You try to escape from the bumbo, and you can’t see toys when we put them in your hands. We have a vision specialist named Meryl that will come regularly starting this next week, and so we will see what toys she brings and how she helps you play. This is so new for us and I’m trying to treat you like a normal baby, but we are also finding there are areas where you are definitely an exception to the rule!

Owen, you are the most easy-going baby. Grammy thought we were lucky because Jack was a piece of cake, but you are even more easy-going than he was! You are a delight to be around and are generally very well behaved, even if it’s a little past feeding time and I need to run just one more errand.

It brings tears to my eyes to see you get so excited over little things like seeing lights. It puts the warmest smile on my face when I see you smile when I kiss your cheeks. I hope you understand that even with your albinism, I am doing the best I can to help you grow and develop just like every other kid. You’re different, and have so many challenges already. But you’ll be stronger for it. Love you, little Owen.

But I am no such thing.

When we left the hospital with Amelia, we ran into a group of older ladies that stopped to check out the “latest model”. I’m sure they were shocked when they peered over my shoulder and saw her physical deformities, because the smiles all of a sudden turned to pity frowns and became whispers as they walked away.

I’ll never, ever be able to erase how I felt at that moment. It was the first time I experienced shame and embarrassment for being a mother. Didn’t they know we were bringing her home to die??

It’s happening again. When Owen was tiny, people didn’t expect him to look back at them. But he’s 4 months old now. And so many times a kind stranger comes up to us in public and tries to catch his eye, trying to coax out a smile. And my heart burns with fear and longing and sadness on the inside because they don’t know he can’t see. Will they understand his blindness, or will I get the whispers and pity frowns?

Owen obviously doesn’t even see them. It has happened so many times that I’ll never forget the slight confusion on their faces when we part ways, probably wondering what is wrong with my child.

I feel so blessed and so humbled for the babies we’ve been blessed with, no matter how long their time has been with us on earth. But is there peace to be found as a mother, or will it always be this way? Will the heartache and concern I feel ever turn into a full trust and reassurance in our Heavenly Father’s plan?

SEATTLE!

We try really hard to take a yearly vacation, and this year we went to Seattle! We had the best weather – about 80% of the trip, the skies were clear and blue. Our hotel was just a few blocks from the space needle, and had a shuttle that took us within a mile of the rest of the city. We utilized the shuttle a few times, but Tyler and I love to walk, so most of the time we loaded the boys up in the stroller and off we went!

Here are some highlights: (for more pictures, you’ll have to follow me on instagram @delightedtobe)

I should mention that for a while, I was on the hunt for a new stroller. We really need more sun coverage for Owen than this one provides. I borrowed a double BOB from a friend and loved the sun shade, but ended up missing the flexibility of my inline phil&teds, where we can make it a single or double stroller according to our needs. So at the suggestion of another friend, I emailed phil&teds with our sun predicament and they graciously sent us a UV cover for the back doubles seat! We loved it so much on our trip we ended up ordering one for the front as well.

We ended up buying discounted City Passes through Tyler’s work, and they were well worth the money. And again, we totally lucked out with the weather – look how clear the horizon was on our bay cruise!

(Someone graciously gave Jack balloons when we were out walking about.)

When we got there, I surprised Tyler with tickets to the Seattle Sounders game! He’s a huge fan of soccer, and loved it.

Pike Place Market was cool! We loved all the little food vendors and the flowers. We didn’t take anything home, but we did buy some donuts on one of our trips. ;)

If you get the City Pass, you can go up in the space needle twice – so we went once during the day and once at night. Totally different view!

The Museum of Flight was cool, but I wish we had a car to drive out there. I think 3 days were fine with trains, busses, and shuttles, but the last two days we would have benefitted from a car. (We had one the last day). It’s a ways outside the city, and I’m not sure it was worth our time on public transportation to get there and back.

One of our favorite places was the EMP museum. It showcased all kinds of modern music. But by day 4 and 5 of the trip, it was quite apparent that this little boy really needed a nap.

We made sure to go see the boat locks and the salmon run. It’s amazing how fast they drain the water out to let the boat through!

My cousin Pamela and her husband watched both kids for a few hours while we went up to the Boeing Factory. The tour was incredible and I highly, highly recommend it.

All in all we really had a great trip. I love traveling. It certainly isn’t easy with kids – Jack had many, many tantrums and tears. (Totally thought Owen was going to be the difficult one, but I was wrong!) But I think we all had fun nonetheless. :)

It’s been well over a month since we celebrated (what would have been) Amelia’s 2nd birthday, but I thought it might be important to share our yearly birthday family picture. We’re now five people strong, but still missing her each and every single day.

Sorry it’s been a week or two. Aside from the fact that I can’t seem to sleep a full night or turn off my dang brain for ten short seconds, we’re doing fine. We really are.

We’ve received much more devastating news than being told our son has albinism. I mean, we were told that Amelia was going to die right after birth. And then I carried her wiggly little baby self in my belly for five long months after that, and watched her die in my arms two days after she was born. And then I cried and cried and felt so empty inside and out for so long.

So in comparison to that whole phase of our life, we really can do this. It certainly won’t be a piece of cake, but Owen will live and thrive in his own sense of normalcy. What a blessing that is, you know? He doesn’t know any different, and who am I to tell him otherwise?

I won’t sugar coat it, though. Yes, it sucks. I’m rubbed a little raw with emotion right now because I feel for him and, just like Amelia, wish so desperately that I could fix him. Yes, I’d love for my sweet little Owen to have perfect vision like the rest of us. But he doesn’t, and we can’t change that.

But sometimes I do wonder, why me? Jack had torticollis (couldn’t turn his head left when he was born) and pretty severe speech problems, Amelia died from an incurable birth defect, and now Owen has albinism and is almost blind right now. I can’t seem to catch a break here. Am I even capable of producing a healthy child?! Should I even be having kids?!!

Is there something I’m missing? I have plenty of friends who the worst they’ve been through with their children is the flu. What the heck.

I’ve cried a lot over this, about why Heavenly Father would send me these trials over and over again. And they’re not even MY trials – they’re placed upon my sweet children instead. On top of how harsh life already is, my Owen baby will struggle time and time again with low-vision in a vision-focused world.

If I think about it for too long, I just get all worked up and frustrated. My mind is plagued with “what-ifs” and sleep always seems to be juuuuust out of my grasp because of it.

There isn’t an answer (other than plain ol’ genetics) as to why Owen is affected. So I have to be done mourning what was never meant to be.

Our family has been blessed with the most pleasant, joyful spirit, whose vision is steadily improving teensy bit by teensy bit. One day we’ll notice he sees the poster above his changing table. And then the next day we’ll notice he sees his fox. And then all of a sudden, I swear he can see the lights on his play gym.

Or maybe just the butterflies on top, but hey!—progress.

He’s all smiles and giggles. You’ve really gotta work to get him going sometimes, but if he’s in the right mood he’s quite talkative. He’s cheerful and so darn happy to be alive.

Owen, you will thrive and can do anything you set your mind to. As much as I’d love to protect you, mark my words—I’m not going to be the one to hold you back.