Wednesday, July 25, 2012

A Unique Privilege

"I would do it again in a heartbeat."

It's what people say after a great vacation or an awesome dinner.  However, you don't typically hear it after someone's trekked across the country to see his child be poked and prodded by doctors for four days straight.  But it's what my husband said towards the end of his trip with Marcus to NIH (National Institute of Health in Maryland) and it's what we've heard so many parents say of the same experience.

(all photos taken by Mike on his phone)

Photobucket

Photobucket

Last week, Marcus participated in a medical study for Joubert Syndrome and other similar syndromes associated with kidney and liver diseases.   It had been going on for a few years and we were fortunate enough to take a spot during the very last week of the study.  We had many fears while preparing him for the trip.  Will Marcus be okay on the plane or will his sensory issues keep him miserable the whole ride there?  Will he be anxious and fearful at each appointment? (He had several a day.)  Will MIke be okay going to all the appointments on his own?  Will we hear discouraging news after all the testing?

We asked some friends to pray for us and the Lord bountifully answered.  He did so well during his travels and even said that he wanted to ride a plane again, despite the loud noises. 

Photobucket

Photobucket

He was also brave beyond his years at each appointment and our boy, who freaks out at band-aids, became Super Marcus when he didn't flinch while probes were wrapped around his head during the EEG.

Photobucket

There were some difficult times though. Three people had to pin him down to collect 12 vials of blood, and dilating his eyes was also very scary for him and very stretching for Mike.

Photobucket

But by God's providence, our church had the kids memorizing Proverbs 18:10 a few weeks prior to the trip. "The name of the Lord is a strong tower. The righteous man runs into it and his safe." We had been talking quite a bit about the fact that God is a refuge for us; a safe place. And as he recited it with Daddy during the difficult times, I think it was an encouragement to them both, and to us at home, who were praying for them and dying to be with them.

At the end of the week, the head doctor of the study showed Mike and Marcus the results of each test and we were so thankful to hear that besides his retinal degeneration (which we had already known about), his health was stellar. She even said that although there still is a chance he could develop kidney or liver issues down the road, based on his current tests results, it is less likely that would be in his future. We were beyond thankful to hear that news, knowing how much they had to go through the entire week.

After Mike came home, I asked him why, even through the tiring travels and the arduous appointments, he would relive the experience again. Of course, he mentioned that the good results was a major factor, but he also added a few other reasons:

1. Meeting the people.

Not only the amazing doctors and staff who genuinely cared about the children and who actually knew what Joubert Syndrome was (versus the local doctors who often Google JS to find out information about it), but also meeting the other two kids and their families who were there for the study at the same time.

Photobucket

Photobucket

Mike repeatedly said that the trip was so worth meeting Mackenzie, Andrew, and their amazing parents. I'm sure they now all share a very special bond and we hope to, one day, meet again.  (Please read about Mackenzie and her family's experience on her blog!  Hope you don't mind me sharing it, Whitney!)

2. Seeing the world of rare disease beyond Joubert Syndrome.

At the hospital and at the Children's Inn, where they stayed, Mike met and saw many other children with rare conditions. Some with physical deformities never seen before and some who were obviously very ill. In his words (which I'm paraphrasing), "I saw all those children and I loved them all. I would want to adopt them if they didn't have parents of their own. The world would see them and see something wrong, but they are all perfect. And yet, in all these rare diseases, I saw a visual picture of the effects of the fall on this world."

We believe that Marcus is fearfully and wonderfully made. However, there is also the reality that God will one day renew our bodies to be whole again.  And to see so many others struggle with so many other challenges unknown to us, opened our eyes to the fact that much suffering exists.  Not all patients go home with good news like us.  So even though we are daily faced with Joubert Syndrome in our home, there exists a world at large that is longing to be healed of sickness, relieved from pain, delivered from sadness.

But interestingly enough, sadness isn't really what Mike saw there.  He said that so many of the children and their parents were smiling and happy in spite of the reasons why they were there.  And so it dawned on us that being a tiny part of this world of disease and disability is a unique privilege we never thought to ask for.  At least, that's our perspective for now.  It's heart-breaking and exponentially more for those who carry severe pain and even loss of their loved ones.  But for us, for now, we consider it an honor to share a small part of this unique experience.with others.

To learn to recognize the gift that is our health, to entrust our Heavenly Father with our most beloved children, to be stretched and reminded that God's grace extends past our weaknesses, and to long for Heaven...that is the privilege for us.  We are so blessed to have Marcus, who has introduced us to a whole world we would never have known otherwise.

Photobucket

Wednesday, July 18, 2012

What We've Been Up To Lately

Tonight, our family is separated and sleeping along both the Pacific and Atlantic coasts. Joubert Syndrome has something to do with it and I'll write more about it in another post, but for now, here's what we've been up to this summer so far:

Marcus' birthday always kicks off the party season in our household and by the time we celebrate Auj, Mike, and our union's birthdays, we know summer is at full throttle.

Photobucket

I love that we get to gather our family and friends in the backyard, fill up a table with good eats, and watch our loved ones relax and enjoy.

Photobucket

Photobucket

Photobucket

Audrey decorated her and her Daddy's cake and I hope Daddy will remain her main man for a long long looooong time.

Photobucket

I love how he's looking at her in this picture. He loves her so. They share they same face, same soccer legs, same soul.

Photobucket

I love how they get to blow candles together every year. I also love what I'm doing in this picture. Just being happy, I guess?

Photobucket

And what do you do when you take 25 consecutive family pictures and there isn't one where everyone's looking at the camera? Just shamelessly pick the one you look best in. So, voilĂ .

Photobucket

The night when Audrey was born, we heard distant fireworks and it didn't register with me that our whole nation would be at full party mode every time we celebrated her birthday. And 7 years later, we saw fireworks together as a family for the first time (minus Big D). Even Marcus' sensory difficulties didn't stop us from enjoying them and although he initially complained that the noise was too "popcorny", they remained the highlight of the day's festivities.

Photobucket

Besides partying, we've been beaching.

Photobucket

The Champ is virtually BFF with the ocean now.

Photobucket

And Derek's fierce flash of underbite is code for "I dig this, Mama."

Photobucket

Audrey took a 4-week drawing class which inspired an after-dinner still life session.

Photobucket

I'd like to say that Auj was shooting for Realism and Marcus aimed at Impressionism but landed at Surrealism.

Photobucket

Summer fun means end-of-day baths and sometimes Jewish baths make you cleaner. Well maybe not cleaner, but they're certainly more fun.

Photobucket

And once your baby brother leaves you alone in the bath with no one to giggle with, what do you do? You have a balance-the-bowl-on-your-head contest against yourself.

Photobucket

Here's to a slow, restful, fun, sometimes naked summer.

Photobucket

Tuesday, July 3, 2012

What We've Been Up To Lately

So very thankful for everyone's encouragement after the last post. Your comments and emails were so appreciated. Spent some time with girlfriends last night too and I'm reminded that all of us parents are in this together and we are sustained by the sufficient grace of God.

Warning: a majillion pics coming your way in a catch-up post of what we've been up to lately.

Father's Day-ing

Photobucket

While feasting on CA Grandma's cooking

Photobucket

Photobucket

And prayers for the Daddy we so appreciate and love

Photobucket

Photobucket

Photobucket

Making Daddy build a giant marble track for the kids

Photobucket

Getting to see my mom after the passing of my grandfather

Photobucket

Loving seeing her enjoy the 5 grandkids

Photobucket

Watching the Champ get familiar with his new big-boy bike.

Photobucket

Photobucket

Photobucket

Photobucket

Photobucket

Hoping to get his own set of wheels one day

Photobucket

Cooling off in the backyard

Photobucket

Photobucket

Getting blasted with water in the nostrils

Photobucket

Photobucket

Channeling Edvard Munch

Photobucket

Needing to sulk a little bit because having too much fun isn't always good

Photobucket

But the boys don't care

Photobucket

Photobucket

So she's back to smiles and again

Photobucket

Spending restful afternoons outside

Photobucket

With geeky books

Photobucket

and sweet girls

Photobucket

Using the natural and artificial breezes to propel pinwheels

Photobucket

Photobucket

And watching them spin for an hour and a half

Photobucket

Starting a series I hope shes loves (even though I never read it when I was young because I was busy reading Stephen King and writing weekly letters to NKOTB)

Photobucket

Not smiling after a nap

Photobucket

(maybe because his leg was stuck and Mommy was just taking pictures of it)

Photobucket

 Amazing Grace-ing on the keys

Photobucket

Going out for our first summer morning at the beach

Photobucket

Synchronized sandcastle-building

Photobucket

Photobucket

Gram-glamming

Photobucket

Water-fetching

Photobucket

Beach-dancing

Photobucket

Comforting scaredy man-baby

Photobucket

Photobucket

Asking Daddy to bring him closer to the shore

Photobucket

Photobucket

Shell-searching

Photobucket

Photobucket

Braving the waves

Photobucket

although a little scared

Photobucket

but forging ahead

Photobucket

Photobucket

and being glad he did

Photobucket

Photobucket

Crazy bursting with joy over Lover Boy

Photobucket

Photobucket

Photobucket

Photobucket

Photobucket



Getting comfortable with the ocean

Photobucket

Photobucket

Photobucket

Acting like he owns California although his shirt says otherwise

Photobucket

Ending the day with great memories and sandy butt-cracks

Photobucket

Getting ready for more birthdays and celebrations ahead

Photobucket
Related Posts Plugin for WordPress, Blogger...