Markers of Healing

A couple of weeks ago, I was cleaning out drawers and cabinets full of old and half-used vitamins, supplements, oils, medicines, U-bags, creams, etc… everything we have used for John in the past.  I tossed what had expired or was no longer needed. 

Here is the most significant item that landed in our garbage can:

This bag held the remaining powder sachets of the anti-convulsant, Vigabatrin. It was the one medicine (added to four others) that finally helped to alleviate John’s seizures.  The Holy Grail of seizure meds…  If you remember from the Caringbridge days, at one point we were so desperate to have this medicine for John before our meager supply ran out that Meade flew to Canada for less than 24 hours to get it from a pharmacist in Toronto who took pity on us.  At the time, Vigabatrin was legal but not yet FDA-approved in the U.S.  And when we first came home from the PICU with John, we did not realize this medicine typically had to come from England and through US Customs before arriving on our doorstep two weeks later… an eternity when you are counting minutes and hours between seizures.

This was not my first attempt to throw away this medicine.  Despite its expiration date of 2011, it wasn’t until two weeks ago that we had the faith and confidence (and JOY) to get rid of it forever!

It is crucial to have these markers in our lives.  These moments when we can reflect on the Lord’s past faithfulness.  We continue to pray for John’s healing, and yet we are reminded of how very far the Lord has brought John in His great mercy.

For our family, this picture represents no longer living in that kind of fear and uncertainty.  The fear that destroys.  The uncertainty that robs.  We are set free.

I pray we will all keep track of the markers God has placed in our lives in each season.  And that these healing markers will give us strength for today and hope for tomorrow.  Because Lord knows, in this shabby and trying world, we desperately need strength and hope!

“All my longings lie open before you, O Lord; 

my sighing is not hidden from you.

I wait for you O Lord; 

you will answer O Lord my God.”

-Psalm 38: 9, 15

A few updates:

-John had a great appointment a month or so ago with the ENT.  His ears have no more fluid and very little negative pressure...no need for ear tubes!  Praise God!

-John's communication device arrived!  Pray for us as we have an appointment to configure it and as we learn how to use it to best enable John to communicate.

-John had an amazing two week summer session at his new school and starts back August 6th! We are so grateful for the Lord's provision.  Pictures to come!

Another marker of how the Lord provides!  Sweet Emily got married on the 13th, and she was our first helper last summer after we moved to Atlanta.  She then proceeded to recommend these other fabulous girls who have been such a blessing (Caroline in the fall, Dana this summer, and Gracie in the spring).  We love you all, and congratulations Jonathan and Emily!

At the dentist!  First time for Daniel.

Not Just for John

"Heal me, Lord, and I will be healed; 

save me and I will be saved, 

for you are the one I praise."

-Jeremiah 17:14

I came across this verse a couple of weeks ago… a new one for me.  And for whatever reason, perhaps due to my limited faith, I am still surprised to see additional verses on healing in the Bible.  As if I have made up all the others and their biblical prominence due to naivety and wishful thinking.  As if the Lord is not the same yesterday, today, and forever. 

The hope is that the Lord does remain the same; He does not waver, does not change.  We have counted on this truth as we have felt called to pray for John’s earthly healing ever since he was struck by that very first seizure at 31 hours of life.  Our prayers were desperate at first, cries of anguish, cries from the depths of despair with nowhere else to turn.  Then our prayers gained confidence as we grew in hope founded only in our God.  And yes, we have seen countless miracles.  But of course, we long for more.  And as the years peel off the calendar, despite feeling as if we move in slow-motion while the rest of the world is on fast forward, we doubt at times.  We languish.  We question.  We look to other solutions.  We attempt to fabricate our own path out of a frantic desire for control.  We begin to take our eyes off of the Healer, replace Him, and strive to heal ourselves. 

Fortunately, conviction sets in.  We confess.  We refocus.  We continue to petition the Lord for miracles.  With feeble hearts still learning, we attempt to have faith on our son’s behalf. 

But seasons do change, and with that so do our prayers.  After a couple of years, once we realized how smart and perceptive John is, we felt uneasy about praying these desperate prayers over John, in his presence.  Now, don’t get me wrong, I think prayers should never lessen out of fear, nor should we diminish our passion.  However, we did not want John to feel defective or lesser or that he was not fearfully and wonderfully made as a result of praying for his healing.  We were torn.

But the Lord provided.  We continued to pray for healing in John’s presence, but we prayed for all of our healing.  And then the greater revelation occurred… oh, the truth we can learn from children.  We were supposedly praying for our family’s healing for John’s self-esteem, but the truth we realized is that we truly all do need healing.  We are all broken; none of us can escape our own sin or the effects of the fall found in this world.  

So we will keep lifting our eyes to heaven, unfolding our requests, uniting our hearts in communion with the Healer.

Yes, John needs God’s miracle touch.  But so do we.

“Who can look into a child and forget miracle?

… every child’s a thin place.  I see God.”

-Ann Voskamp

Family Camp 2013!

 ^"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus."

-1 Thessalonians 5:16-18

Following on our Family Camp from 2011, Camp Director Daddy planned a fun-filled and fabulous weekend for us.  From an egg toss to sparklers to a hike at the river to a cookout to adventures with chocolate pudding to our own camp mini-sermon, we had a blessed and bonding weekend...  One of those weekends that leaves you wondering why you don't set aside a weekend simply for intentional family time more often!!!  (As you can see, we missed last year!  But we won't let that happen again!)

Take a look!

Opening Ceremony included sparklers... at a safe distance, haha.

Fun with sidewalk chalk!

 Yes, Meade bought us all Duck Dynasty t-shirts as our camp uniform!

Activity where the boys and I threw popcorn at Daddy's shaving-cream covered face to see how many we could get to stick!

 Walk at the River

Official Camp Pancakes! 

 Chocolate Pudding Adventures!  John showed Daniel the ropes!

Daddy B (or just "B" as Daniel now calls him) and Honey stopped by.

Great Daddy John was our official camp pastor and gave a wonderful talk about Jesus giving us His peace and directing us despite the storms that may surround us.

"Be strong and very courageous. Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go."-Joshua 1:7

Flashback to Family Camp 2011:

In Our Weakness

Tying into last week’s posts, I have additional “war stories” to share today as I reflect upon John’s home program.  Despite breaks here and there, when I think about John’s program the first thing that stands out is the patterning…  ALL the patterning!  This is one of the Institutes’ distinctive techniques, and it involves at least three adults moving John’s head, arms, and legs in a certain sequence with a certain rhythm to give tactile input to John’s brain teaching him over and over again what it feels like to crawl.  At times, we patterned John 12 times spread throughout the day with each session lasting 3-5 minutes.

Patterning March 2010

After our first trip to the Institutes in which we were given John’s initial home program, we realized we would be coming home and asking for a great deal of help.  Something you should know about me: I am a first-born, Type A, “recovering” perfectionist.  I like to be self-sufficient.  I do not enjoy asking for help or feeling I am inconveniencing anyone.  Of course, much of this changed when I was on bed rest with the twins from 15 weeks on and had to depend on others for pretty much everything. Definitely preparation for what was to come!  

Just when we thought the extreme need for help had come to an end after months of meals from our friends and church during and following our time in the ICU after the twins were born (not to mention cleaning, ironing, grocery shopping, etc), we were returning home from the Institutes in December 2009 when John was almost a year old yet again needing to ask for help.  I dreaded this task.  I felt we had already been given far more than we deserved.  I wondered how we would ever find enough people to give up their most precious resource, their time.  And I certainly didn’t want anyone to feel obligated to help because they felt sorry for us. 

Silly me.  As usual, the Lord showed up.  He once again put on flesh and provided an abundance of “patterners” through the most amazing friends, neighbors, therapists, and complete strangers.  These people possessed the common threads of compassion, selfless service, belief in John, and a willingness to be on this bizarre journey with us.  I cry thinking about each person the Lord provided over the past 3.5 years.  I cry realizing how the Lord became incarnate to me personally in each session, as people streamed in and out of our home, with each sacrificial hour given to our family.

We asked for help out of our weakness, due to John’s limitations…   And God gave us a community.  Where we had felt alone and isolated, God brought a patterning family into our home.  When we feared John would not be accepted or known, God provided friends who have loved him more than I thought possible from individuals who are not his parents. 

I have thanked this team, but what always surprises me….yes, even 3.5 years later…. is how they claim to have received more by working with John than they have given.  I do not believe them, but I am grateful!!  

We all have weaknesses and limitations, even if they aren’t as apparent as John’s.  The blessing comes for those of us who have the eyes to see how God uses our weaknesses and needs to bring us together.  Strengths so often divide… but challenges can bond.  And in bonding, we end up stronger.  The program was a gift not only in the provision it brought in its season but also in the community it built around us.

In a world that champions optimizing our strengths, I think Christ wants us to take our weaknesses to Him and allow Him to optimize them. Redeem them. Turn them into greater strength than we could know on our own.

“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 about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

-2 Corinthians 12:9-10

This post is dedicated to all of our patterners from Virginia Beach and Atlanta.  We love you and are eternally grateful.  Thank you for believing in John and loving us so well.

Seasons of Provision

“It's true what you said about soldiers, they do form a special bond. But eventually the battle ends and those who survive, they go home and try to make sense of it all. I guess we all have our own war stories, but they’re meant to be shared, they have to be. Because these stories are what bring us together and they keep us alive.” 

-Felicity, Sally’s character

As we are heading into a big transition for John with his daily routine, I’ve been reflecting on the past 3.5 years and the time we’ve devoted to the program from the Institutes for the Achievement of Human Potential.  The Institutes has become part of our family, and I doubt we would have the vision or hope we have for John without their influence. 

Our family with Glenn Doman and his wife Katie in October 2011.  This wonderful founder of the Institutes passed away a couple of weeks ago.

I am convinced God puts certain things in our lives for seasons.  The program represents a significant season for us.  I know many of our friends and family have often looked at us and wondered what the heck we were doing with so much time committed to this intensive program, with turning our house upside down to build the necessary equipment and devices (yes, even installing large eye bolts into our living room ceiling from which to suspend bungee cords for John’s gravity free program… we had a lot of help with all of these projects!), and supposedly missing out on many opportunities due to the program and the time it required 24/7. 

The bottom line is that the program was a true gift for that particular season.  I am sure you all have had things like this in your life.  When the program came along, we were a shattered mess… still picking up the pieces (or more like hunting for them amidst the rubble strewn across our accident scene) from losing a son to a tragic medical error and going from one doctor to another for John only to hear grim words. 

God used the program to breathe new life into our bodies, to revive us, and to set our feet upon a solid path.  While becoming a full time therapist for my son seemed crazy sometimes (and certainly was at times), God knew exactly what this broken mama needed.  I needed something to pour my life and energy into.  A true lifesaver, I think the program provided just as much for me, if not more, than it did for John!  And it certainly gave a lot to John!

God provides.  Yes, even in the darkest places.  Especially in those places.  And we must tell our stories… to continue to make sense of it all, and to continue to remember what is true.  That we have come through.  That we are more than conquerors in Christ Jesus.  As the quote above insists, our stories are of great import, they bring us together, and they point us to God’s provision.

That is one of the chief aims of He Makes All Things New. For we often find our God-designed lifesavers in the most unlikely places… in the aftermath, in the wreckage.  It is only in death and loss that the Lord can breathe warm, new life and begin His process of making all things new.  Our stories are not yet complete.  Praise Him.

We remain humbled that you choose to be on this journey with us.

 Birthday Boy!!