Remember This

On my wedding day, I kept telling myself, "Remember this."  I didn't want the day to pass without me being fully aware of the day Mike and I became husband and wife.  So now, I have the sweetest memories of that day that even the photographer couldn't capture on film.

Three kids later, my memory-making muscle is always being exercised.  Like every parent, I want to make memories for my children that they can keep for a lifetime.  But lately, I feel like I want these memories for myself as much as I want them for Audrey, Marcus, & Derek.  Time is flying so quickly and I don't want to forget that I was once a mom of 3 young children who were blissfully content and loved being a part of this family.

It's been a season of reprieve for our family, and whenever we get those windows of peace, I just want to soak them up and whole-heartedly thank God for them.  This past month, we had the chance to take a few outings.  I couldn't get the best angles with Big Poppa strapped onto my chest, but I did my best.



So...I want to remember...

How Audrey asked if she could wear this unique outfit on our outing to a nature trail at Newport Back Bay.  She's at a stage where she must wear a skirt at all times, Duggar style.  She also did some interesting layering with her tops.





and then added shades.



I want to remember how Marcus "Whoa-ed" while admiring the view



and did not want to stop hiking up and down, up and down, up and down the trail,



giving Daddy a workout, as usual.



I want to remember how many times Audrey said, "Look!  Look!" at the aquarium.



And that although he was battling a cold, Marcus enjoyed himself too



and still wanted to walk around and give Dad some more exercise.



I want to remember my model parenting:
Me:  Audrey, take a picture in the shark's mouth.
Auj:  I don't want to.  It's scary.
Me:  Audrey, put your face in the shark's mouth NOW.  Obey.



I want to remember how stoked the kids were for their first swim of the season.





And how Marcus was sporting his new shades, male model-style.





I want to remember how bad of  a swimmer Audrey still was, after flunking her swim lessons last year.  This girl thinks she is HOT STUFF when she puts her head in the water for a few seconds.  She says she doesn't need lessons because she already knows how to swim with a vest on.  (????)



I want to remember how Derek woke up from a nap one day and found himself at the beach for the first time.





And Big Brother thought Lil' Biggie looked pretty cute.



I want to remember how Audrey had a perpetual smile on her face the whole day.



And although he was only able to take catnaps, Derek was super happy to be in the sun too.



I want to remember how much the kids liked picnicking on the sand.





And how Audrey could have jumped waves for hours.









I want to remember that although Marcus was scared of the ocean,



he was King of the sand



and couldn't be happier.



He loved ordering his father to "Get more water....pleeeeaase."



And Mike fulfilled his wishes again and again and again.



I want to remember how stoked I was to still be married to this guy



And thankful to add more pages to my mental wedding album.

Big D: Wonder Boy

When Derek was born at 8 pounds 10 ounces with man-hands and man-feet, I should have known that he would be something of a phenomenon.  Today, at 6 months old and 20 pounds, he's proven to be our wonder boy.  Almost everything about him is different than I've experienced with the other two.

First of all, he's by far the earliest teether of the 3.  He started around 3 months old and now he is going on his 7th chomper.  I will be feeding him a T-bone steak tomorrow.



When he's especially hungry and wants to nurse, he opens his mouth as wide as possible, shows me his fangs, does a crazy little head shake as if to go in for the kill, and latches on with his teeth before sucking.  The sound effects that come from his mouth make it seem like he is eating me alive.  During the nursing session, he lets out a few cleansing man-farts.  When he's done, I put him over my shoulder and he releases a beer-belly belch followed by a wet burp which leads to a stream of spit-up that runs down my back.  When I stand up, I look down and see that I've just sat in a puddle of breastmilk.  My pants are all wet.

Clothes are a bit of an issue.  He grows at a rate faster than my ability to find suitable clothes for him.  For a while, his onesies were off-the-shoulder with only 1 out of 3 buttons closed on his crotch.  I finally pulled out the 6-12 month size, so he's a bit more comfortable now.  No more off-the-shoulder or boatneck onesies, but they are V-neck from time to time.  And sometimes, they show off a bit of baby cleavage.





He doesn't crawl on his belly yet, but he's managed to get around for a few months now...on his back.  Think inchworm, but upside down.  He gets into a bridge pose balancing on just his head and feet like this:



Then he straightens out and bends again.  That's how he travels from one end of the rug to the other.  Here's a frontal view:



Bird's eye view:



Sometimes he'll do a one arm stabilizer:



Since he was born, he's made us wrestle him for everything.  From diaper changes to changing his clothes, he makes us pry his extremities open.  Sometimes he is so strong and I'm so tired that I just want to forfeit and let him win the arm wrestling competitions.  What makes diaper changes even more challenging is that he feels that he must squeeze his nether regions whenever his diaper is open.  He squeezes so hard that it looks like he's trying to make lemonade.  Needless to say, this gets a bit messy when I'm changing a poopy diaper.  Add to this his love of doing back bends.  I get sweaty at each diaper change.

Since he outgrew his infant carseat at birth, getting him in the car has been sort of an issue.  Due to his girth, it is quite uncomfortable for him.  Therefore, he likes to stay sitting upright.  I have to push him down with all my might or do a tug-of-war with the seatbelt adjustment strap to make him recline like he's supposed to.  Even then, I sometimes give up and he'll just ride across town sitting up.



Who does he inherit these traits from?  He seems to resemble someone else quite notorious:



O Derek, I love to wrestle you and shovel food in your mouth really fast.  I love having to pull my hair out of your grip of death.  I love how you almost bite our fingers off.  I love how you sweat like your sister and your father.   I love that now I know what it's  like to bathe a seal. I love how you giggle when I put you in your bed.  I love how you give us your generous smiles.  I love burying my face in your rolls.  I love that you are so happy and that you love being in our family.  I love that God created you in my womb and sent you to us even when I couldn't dare to even ask the Lord for another child.  I love that I'm so undeserving of you.  I love you.

Mom

This post is a week late, but I've been wanting to write about my mom.  I love her.  I miss her.

I think about my worst fear as a mom, and that's  seeing my children suffer.  Then I think about my mom and she is living out this fear.  Not only does her heart break for her grandson, but she's watching her own daughter suffer as I go through the valleys of special needs.

But she's my rock.  Ever since Marcus was diagnosed, she has never shown me any doubt in God's goodness, any anxiety about Marcus' health, or any worry about my well-being.  Although she may worry or be sad, she lays her tears at the feet of Jesus and shows me only the peace she receives from Him.  Whenever I am sapped of strength or hope, I am held up by the fact that she showers my life with her early morning prayers.  She prays for me even when I'm too weak to pray for myself.  She trusts unwaveringly in our loving Father and reminds me of how trustworthy He is.  What a gift she is to me and my family!







For Mother's Day, I didn't get to see my mom, but I spent the day as Mom to my kids and celebrated with them.  What my mom is to me, I want to be for them.











From my mom, I've learned that God is generous, kind, merciful, and in control.  I've learned that trials and conflicts and pain are God's gifts to bring us closer to Him.



She never sat me down to teach me these things, she just showed them to me through her life.  I pray my children will one day see the same in mine.

Thankful Thursday - Perspectives

Today, I'm thankful for things that I haven't been thankful for before.  They may be things I usually complain about and will probably complain about again, but tonight, God's given me a different perspective.

1. I'm thankful for bodily functions.

Marcus' speech is exploding right now and we've noticed that he's got quite the potty mouth.

M: Knock-knock
A: Who's there?
M: Banana
A:  Banana who?
M:  Banana wants poo-poo.
(Eruption of high-pitched giggles.)

And who would have thought that potty training would increase his vocabulary?

One day, looking in the toilet after doing #2, he said, " Eeew, stinky.  So much poo-poo.  HuMONgous!!!"

But besides the potty mouth, he's also a big question-asker now.  We are loving all the  What, Where, and How questions.  My favorite was when our little neighbor friend stopped by yesterday and without any prompting from us, Marcus said, "Hi Reese!  How are you?"  Mike and I just looked at each other and smiled and melted.

2. I'm thankful for a messy house.

I was proud of myself this week for folding the laundry and piling them up on the stair banister like this:



It was a huge accomplishment because they're usually piled into laundry baskets downstairs and Mike and I have to treasure hunt for clothes every morning.

Before I had kids, I had delusional thoughts that I would always keep my house clean even after having  children.  My kids would be able to eat off the floor because it would be spotless, and I'd pass a white glove test any day of the week because I'd be dusting very often.  The kids would pull out one toy at a time and put it back after choosing another one and they would demurely nibble on their snacks at the dining table and wipe sticky hands on napkins to avoid crumbs and fingerprints.  There would be no messy piles of junk laying around, and I would finish all my chores according to schedule so that strangers could stop by at any time of day and see an orderly home.  Was I on drugs?!

But seeing that my house in real life fails to meet the expectations of my fantasy life, makes me realize that my capacity is limited and my life is full.  There are diapers to change, meals to prepare, a husband to talk with, a baby to hold, a kindergartner who needs help with homework, and a 3  year-old who loves to spoon in the afternoon.  I'll take that over a clean house any day.

3. I'm thankful that I don't have a garage.

Believe me, I complain about this one every time I lug the 3 kids and backpacks and groceries on the 32 mile journey from the car to my front door.  Most of the time, the baby's crying from hunger or a missed nap, I'm impatient with the kids, sweating, and wearing an ugly scowl on my face that looks just like the whining in my heart.  But God helped me realize that we are still living in our 2-bedroom condo neighborhood for some good reason.  And maybe the daily trek to and from the car is actually good for Marcus.  That's 64 extra miles of walking per day for him that he would otherwise not have if we had a garage.  And maybe that's why he's starting to gain more endurance walking and able to take a few small steps independently now.

Check out the first couple seconds in this clip.  Kind of cool, huh?



4. I'm thankful for an anxious heart.

What?  Yes, I'm thankful that I was anxious for the past week or so.  Whenever we have an ophthalmology appointment coming up for Marcus, I get anxious that we will be hearing the news we most dread; that he is beginning to lose his vision.  Due to various circumstances, I was more anxious than usual about an appointment this week.  But what a sweet time it was to lay my burdens down at the feet of Jesus, search His promises, pray with my husband, and be comforted by Him.

The doctor told us that Marcus' vision remains stable and that he is tracking even better now than before.  This news was a relief to hear, but in a greater way, what encouraged me was the fact that the Lord continues to bring me near through situations like these.  He doesn't seem to let me wander too far off before He draws me in again to remind me that nothing will separate us from His love.

Day By Day

After Marcus was diagnosed in 2007, I didn't know how life could go on as normal.  How we could continue to live our daily lives and smile through it was a mystery to me.

But indeed, life continued on and we're still going strong with "normal".





Maybe even better than normal.



And as our kids carry on with their typical kid activities, I find the normal things they do seem peculiarly more special to me.





Sometimes I wonder if they sense the perpetual heaviness in our hearts.  Perhaps they do, perhaps they don't.  In either case, they seem like they're doing alright.







And although I can lose myself in spirals of Mommy Guilt for not doing this or that for them, I know in my heart that they are blessed beyond measure.  For the Lord holds them and their parents in His giant, safe, powerful, loving hands.

From Loathing To Boasting

Since he was 5 or 6 months old, Marcus has received multiple types of therapy.  We are ever so thankful for all the people who have come into our lives to help with Marcus' development.  Because of these services, we've had things in our home that I never thought we'd have, and some that I never even knew existed.  We've had 3 different types of walkers, ankle/foot orthotics, benches, parallel bars, oral-motor tools to help with his speech, brushes for sensory integration, scooter boards and balls and bolsters for vestibular and proprioceptive stimulation, the list goes on and on.  To me, all of these things have symbolized growth, progress, and development.

But there is one thing in our home I loathe.  It symbolizes decline, reversal, and greater suffering.



Many of don't even know what this is.  I wish I didn't either.  It's a brailler.  Marcus' retinitis pigmentosa, which some people with Joubert Syndrome have, is a degenerative vision condition.  Our doctor told us that Marcus will lose his vision, although at what pace and to what degree we are unsure.  Because of this diagnosis, we have pushed for vision services through his school (albeit reluctantly), so that someone can teach him braille in preparation for this vision loss.  Thus, this ugly, heavy, evil contraption in our home.



Don't be fooled.  Marcus is smiling in this picture, but he doesn't like the brailler either.  His vision teacher is the only person that ever tells us that Marcus is unmotivated or uncooperative.  He hates practicing it because it's hard and very irrelevant for him right now.  He probably thinks to himself, "Why in the world do I have to press these heavy buttons just to make tiny little dots on a piece of paper?  What is the point of all this?"

I was going to devote this entire post to how much I abhor the brailler until I read this post by a father suffering way more than me, taking care of his daughter who has been battling cancer.  Regarding what kind of future he is afraid of, he says:

The concern that lurks on the horizon for me is that comfort would return...Yes, I want this to be over - I want normal. Yes, I desire something that is not constant. Yes, I would love to look at my daughter with hair and have friends over, and not go to clinic and a million other things we used to have.

HOWEVER

Normal is not what has caused us to love Jesus deeply. Comfy couches, well maintained cars, juicy burgers, and health are not the ingredients for perseverance. Predictable and visible are not what comprises HOPE and FAITH. So, while I desire this to be over and have a return to life as we once knew it - with a far greater degree of purpose and intent I don't want it over. I look on the horizon and I see that the removal of trial and suffering brings with it the potential for comfort and that scares me. I want to, as Paul says, "know you in your suffering."

Maybe you too echo with me this concern: "Lord, don't remove affliction simply because it is hard, give me a reprieve that I might catch my breath before I go deeper into knowing YOU!"

My heart stirred as I read his words and realized that there is a sliver of my heart that feels the same way.  I would do anything to find a cure for Marcus, a magic potion that would take away all of his challenges.  But would I take away the hardship that has turned out to be so precious and sweet to my soul?  No.

Mike and I often wonder what we would be like if Marcus were completely healthy.  And considering how prideful we still are now, we don't even want to "go there", imagining how self-sufficient and even more arrogant we'd be.  Although we ache daily for our son, seeing him face so many difficulties and more to potentially come in the future, we are grateful that the Lord has gently and lovingly led us to the valley.  We see our Savior a little clearer than we would if perched on the peaks.

My prayer is that instead of loathing the brailler and everything it symbolizes, I can boast in it.  To have the attitude of Paul who recalled,

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  (2 Corinthians 12:9)

Rather than wanting to spit on it, smash it to pieces, and drop it from a 10-story window, perhaps I should give it the place of honor in my home, displaying it as one of my treasured possessions.  After all, it symbolizes God's grace in my weakness and His desire to reveal even more of His love to us.