Three Years!!

“Our mouths were filled with laughter, our tongues with songs of joy. 
Then it was said among the nations, ‘The LORD has done great things for them.’ 
The LORD has done great things for us, and we are filled with joy.”

-Psalm 126:2-3

That's right!  This week we have been celebrating 3 YEARS of SEIZURE-FREEDOM for John!!  We can hardly believe it!  God is so good.  We went from counting minutes between seizures to now counting and celebrating YEARS: 3 seizure-less years.  Amazing.  Truly amazing. 

It is good and right to celebrate milestones such as these and rejoice in this HUGE miracle while we continue to hold onto hope for the additional miracles God has in store.  Reflecting on His faithfulness and professing what He has done build faith for the future while fighting fear of the unknown. 

We have had some truly special moments this week.  Monday, John basically laughed all day.  All through horseback riding.  All throughout swim therapy too.  And even while eating his dinner, to the point we were afraid he was going to choke on his food!  This child’s joy is simply contagious, and we are grateful for the reminder that the joy of the Lord is our strength and it is not dictated by circumstances.  It seems Daniel has the “happy gene” too! 

To go along with his laughter, John has just started to clap!  I think he picked this up from his little brother… we’re so grateful they have each other.  John cannot put his palms together yet so that they are flat against each other, but he is purposefully clapping in his own way!  A definite gift and sign of improving brain pathways.

Lastly, my childhood pastor was in town this past Sunday; it was a joy to hear Pastor Wood preach and see him and his wife.  He is one of the few people who met Warren this side of heaven, something I will always cherish.  The Woods also have a son with medical needs who I grew up with, my dear friend Paul. He is now 34 and continuing to beat all the odds and bless all who know him.  Pastor Wood commented that if our sons had been born in the 1950’s, they wouldn’t have made it.  And with that in mind, it is easy to thank the Lord, remembering how each and every day with our precious children is a GIFT.  Praise God! 

Pastor Wood also reminded me of the beautiful poem found in Corrie Ten Boom’s inspiring book, The Hiding Place.  I couldn’t agree with Pastor Wood more: If anyone has credibility and the authority to speak perspective into hardship, it is this woman who suffered through Nazi Germany by both protecting many the Nazis targeted and also enduring a concentration camp herself.  What a testimony!  I hope this poem challenges and blesses you, as it once again did for us (And note the images at the bottom):

My Life is but a weaving

between my Lord and me;

I cannot choose the colors

He worketh steadily.

Oft times He weaveth sorrow

And I, in foolish pride,

Forget He sees the upper,

And I the under side.

Not til the loom is silent

And the shuttles cease to fly,

Shall God unroll the canvas

And explain the reason why.

The dark threads are as needful

In the Weaver's skillful hand,

As the threads of gold and silver

In the pattern He has planned.

He knows, He loves, He cares,

Nothing this truth can dim.

He gives His very best to those

Who leave the choice with Him.

Back in the Saddle Again

We are back in the saddle, literally and figuratively! 

First, here is a short video of John trotting for the first time on Pinkie at his lesson last Thursday.  It is hard to tell from this video, but John had the biggest smile on his face!  He and Daniel both are thrill-seekers for sure!

Second, we are “back in the saddle” of the program!!  Yay!  We couldn’t be more excited to be embarking once again on John’s home program, custom-designed by The Institutes for the Achievement of Human Potential in Philadelphia.   The program is designed to treat the source of the problems: the brain, as opposed to merely focusing on the symptoms.   

We consider ourselves blessed to feel rested and truly ready for John’s program after a busy, albeit very rewarding, year (having a baby and moving were at the top of the list!).  It’s hard to believe Daniel is now 15 months old and we have lived in Atlanta for 6 months.  Time flies!

Since John was a little over a month old, we felt the Lord telling us He was healing John.  We prayed Mark 11:22-25 and have experienced countless miracles amidst the ups and downs.  Of course, we initially expected the “big,” instantaneous, Bible-type of miracles: the parting of the Red Sea, David defeating Goliath, loaves to fishes, walking on water, Lazarus brought back from the dead, lepers cleansed, etc. 

However, as we have continued on this journey, discovering its intricacies and rich layers at every turn, we also began to notice the other miracles in the Bible.  The ones that unfold.  The ones that require time.  The ones that are a process.   

Do you remember the story of Joshua and the Battle of Jericho and the corresponding children’s song about the walls that “came tumbling down”?  If you recall, the tumbling of the walls required the troops to march around the town seven days straight before any action was seen (Joshua 6). 

Or how about Naaman’s healing in 2 Kings 5?  He was skeptical at first, as I would be, when God’s prophet Elisha offered the “help” of directing him to wash in the Jordan River seven times.  As believers, I think we often react as an angry Naaman did: “I thought that [Elisha] would surely come out to me and stand and call on the name of the Lord his God, wave his hand over the spot and cure me of my leprosy.  Are not Abana and Pharpar, the rivers of Damascus, better than any of the waters of Israel? Couldn’t I wash in them and be cleansed?” (2 Kings 5:11-12).  Similarly, we shout, pout, and take matters into our own hands.  Fortunately, Naaman eventually came around, washed in the Jordan River, and received his healing.  What’s more, the healing produced faith in the one true God.  What a gift!

Lastly, I can’t help but think about Abraham and Sarah and their God-promised child.  You know they must have felt crazy waiting on God’s promises.  And in fact, they thought God was crazy and even manipulated the situation at one point to try to get to the end God had promised through sinful means.  However, God was gracious and HE didn’t give up on His original plan even when His followers of little faith had.  Despite old age, years of painful waiting, and the presumed roller coaster of times of hope and times of discouragement, God enabled Sarah and Abraham to give birth to their promised son Isaac, a miracle indeed (Genesis 21).

Like these stories in the Bible, we pray we can be faithful in the process.  And we pray the same for you as you steward the miracles (whether they be quick and tidy or long and involved) in your own lives.  For us, John’s program is the process God has provided, like repeatedly going to the river, doing the same things (patterning, masking, sensory stimulation activities, crawling down the slide, etc) OVER and OVER again.  We often enter into our “river” dirty, coming forth one step closer to the promise.  Coming forth cleansed.  Coming forth with renewed vision.  Emerging with our eyes set not only on the hope before us but also on the rekindled joy for this very day. 

Let’s pray we can be faithful stewards of God’s vision, even when washing in the river once again feels absurd or pointless.  God works in the process, refining us, molding us… so that we will “come forth as gold” (Job 23:10).

 -------

In terms of program specifics, we have eased into some patterning this week. Patterning is passive on John’s part as the adults move his head, arms, and legs in a certain sequence to give his brain tactile input, telling it over and over again, “This is what it feels like to crawl/walk/etc.”  He is on his tummy on a massage table as we pattern him. The stimulation we do of the various incoming pathways to the brain actually grow those pathways making output (motor skills, hand use, speech) possible.

We have also begun “masking” again. John breathes into this plastic bag for one minute at a time.  Just like a person who is trying to stop hyperventilating, masking forces John to take slower, deeper, more efficient breaths.  Consequently, his chest cavity itself grows and allows deeper, more mature and effective breaths even when he isn’t masking.  Moreover, masking causes John to rebreathe his own carbon dioxide

And there is a lot more fun to come!  Thank you for your prayers that both brought us to this point and will carry us forward in this next season in our family’s life!

John masking!

Hopefully the program will keep us out of trouble!  :)

Scars

"Oh, bless our God, you peoples!

And make the voice of His praise to be heard.

Who keeps our soul among the living,

And does not allow our feet to be moved.

For You, O God, have tested us;

You have refined us as silver is refined.

You brought us into the net;

You laid affliction on our backs.

You have caused men to ride over our heads;

We went through fire and through water;

But You brought us out to rich fulfillment."

-Psalm 66:8-12

Has life left you with any scars?  I'm guessing if you're old enough to have lived through middle school, then you can answer "Yes" to this question.   :)   And if you are younger than middle school age or enjoyed playing outside during that season of your life, then I imagine you have some scars of which you are quite proud and stories that accompany them.  

I have a vertical scar at the top of my forehead that I acquired by running into my Dad's coffee table at his pediatric office around the age of 3 while playing peek-a-boo with my mom.  Then there is the horizontal scar on my right knee from a couch cushion zipper during a wrestling match with my brother.  Lastly, I have a scar on my left leg as a testament to my beloved childhood golden retriever who excitedly drug me down the driveway after spying a squirrel he wanted to chase.  (Fortunately for my parents, only the first scar required stitches!)

But I think we all know that we also carry scars that weren't left from pleasant experiences, experiences we can't look back upon with a chuckle.  Some of these scars are external and others are internal.  Regardless, these scars leave us forever changed one way or another, and they hold their own stories that are etched into our hearts.  

John has a few of his own scars.  In the past, I have looked at these scars with sadness... They have reminded me of all we have endured as a family and all John has had to experience at such a young age. Another tempting opportunity to ask, "Why?" 

He has multiple scars on his forehead (left and right sides) from EEG leads (the EEG is the procedure that analyzes the electrical activity in the brain).  

John during an EEG as a baby... the metal leads are attached all over his head under the gauze wrap.

John also has two scars on his thighs, one from a skin biopsy and this one below from a muscle biopsy, both testing for mitochondrial disease before he even turned 1.

Then there are the scars that dot his wrists, hands, arms, and feet from IVs and central lines from his first 3 months of life spent in various Intensive Care Units.

I find scars are another one of those things that simply takes time and God's healing touch to be able to discern the beauty that eventually comes forth, the insight that is offered, the comfort that can be extended to others in similar situations, and the strength that is manifested in our weakness (2 Corinthians 12:9).

Isn't it interesting, that even in His glorified state after the Resurrection, our Savior still carried and boldly revealed his scars? (See Luke 24:39)  Furthermore, it is by His scars we recognize Jesus (and by His wounds we are healed, Isaiah 53:5).  After telling the disciples to examine his hands and feet, He asserts, "You can see that it's really me."  

Wow, to think our scars are part of what makes us who we really are.  Our scars and their stories.  The shaping pain.  The battles won.  The future in store.  

Certainly, it may take time.  But perhaps we can become like the little kid boasting even in our messy adult scars.  Not because we boast in ourselves, but because we rightfully boast in the Lord and how far He has brought us.  (I encourage you to re-read the scripture passage at the top.)

Check out this post on scars from Katherine Wolf if you have time.  The Wolf's blog is a true gift!