A Spacious Place

“Forget the former things; do not dwell on the past.  See, I am doing a new thing!  Now it springs up; do you not perceive it?  I am making a way in the wilderness and streams in the wasteland.” 

-Isaiah 43:18-19

Several months ago, I mentioned wanting to share about the new season we are in and what the Lord is doing in our hearts through it.  So here goes!  I hope you can relate based on whatever season you may find yourself in and as you reflect on changing seasons that have come and gone in your life.  Additionally, we have included some recent medical updates and prayer requests at the bottom.

 Enjoying a fall day!

First, there was the season of joy and anticipation of what our life would soon look like as I was pregnant and on bed rest with our precious twin boys.  Next, we hit the season of crisis and utter grief after experiencing the highest of highs bringing John and Warren into the world.  The following months were filled with the complexities involved in processing our grief, adjusting to (or more like resisting) our “new normal” that didn’t feel normal in the slightest.  I could go on and on about this season, but for the sake of time, I will jump to when we found the Institutes for the Achievement of Human Potential when John was almost a year old. 

Hope entered the scene once again.  With only glimmers at first.  A feeling long in hiding.  And we embarked on a season that the Lord used to truly save our lives.  We were given John’s intensive home treatment program.  Pouring myself into this program certainly made a huge difference in John’s life, but what I didn’t realize at the time was the immense difference it would make in mine.  I was given back some control and say regarding my son’s health and development.  Finally, there was something I could do!  I was no longer stuck with appointment after appointment with either no answers or horrible answers and simply told to pay my bill and come back in 3 or 6 months. 

We found a team of people who not only didn’t look down on us for believing in John, but also championed our cause, gave us renewed vision, and helped us pick ourselves up and dust off the debris from battling on the front lines for so long.  There was hope. And there was something worth fighting for despite the outcome.

I heard the following quote a year or two ago from one of our soldiers in Afghanistan:  “We cooperate and we fight as hard as we can, because there will perhaps be disappointment but there will be no shame.”  I can hardly think of a better way to capture our time devoted to the Institutes’ program.  Yes, the days were oftentimes grueling and long with apparently little or no progress made.  But there was certainly no shame as we knew we were doing what we were called to do, crazy as it may have been, to help John.  And like I said, in that, God was pulling us out of the wreckage and into this new season of hope and vision.  Without these two things, I don’t know how we can survive.  I was content in my role of full time therapist. 

Fast forward again… we have another son on earth.  We move to Georgia.  We line up new therapists, doctors, Medicaid, his public school Individualized Education Plan (IEP), etc, and now we have another son coming soon!  Life is full!  If I am honest, I became quite exhausted much of the time carrying the weight of John’s development along with juggling life’s additional responsibilities.  The program was a Godsend for a season, but I frequently found myself feeling burned out and guilty for not doing more.  It was time for a change.  I needed help with John’s care without releasing hope for his future.

This help came in the form of the neurodevelopmental center and fully accredited school we found in May just 35 minutes from our home.  Here we found another wonderful team that spoke our language, also believed in John, and wanted to give him every chance possible to fulfill his potential with individualized therapy, academics, and brain stimulation.  A place much like the Institutes but with energetic amazing staff ready to help me in my own city!  And they love John like one of their own.  It is a dream come true.  I am still amazed at how God paved the way for us here before we ever moved, knowing exactly what we would need as our family grew and as our seasons changed.

John's first school picture!  Rocking his new glasses which he seems to love. :)

We are grateful God never stops fighting for us and provides “a way in the wilderness” and “streams in the wasteland.”

Another verse we love that completely applies in this new season is found in Psalm 18:19:

“He brought me out into a spacious place; he rescued me because he delighted in me.”

Although it doesn’t always feel this way, God does delight in each one of us and longs to be our rescuer.  I spent quite awhile focusing on my role as full time therapist.  And now in the last 6 months, I have simply been able to be “Mommy.”  And this is a role I relish.  So redemptive!  Thank you Lord Jesus for bringing me into this “spacious place”! 

What roles or seasons are changing in your life?  I encourage us all to step back and soak in this evidence that the Lord is certainly at work making all things new.

A few updates and prayer requests (and a few more pictures):

-John is having surgery this Thursday morning, December 5^th, to have ear tubes put in both ears.  John tends to retain fluid in his ears and also have negative pressure in one or both ears.  This procedure should help these things and, at best, may help his vestibular system (which relates to balance and movement) as well as his articulation/speech (which we pray will still emerge at some point).  Please pray for a successful surgery and for a quick recovery from the anesthesia.

-John had an appointment with Dr. Shoffner (mitochondrial disease guru) last week.  It was helpful and of course interesting to hear he does not think the genetic mutation we’ve most recently been told is a main cause for his condition is actually responsible.  We don’t really ride the roller coaster anymore; it’s almost laughable how many diagnoses, prognoses and probable causes for John’s challenges we have been given over the course of his life that have later changed.  However, John gave blood to have further genetic testing that we will go over in a few months.  And there’s always hope that a correctly identified cause for his problems will lead to better treatment in the future.  It’s amazing how rapidly this field grows every day. Grateful for the doctors working hard on this research!

-I am doing well and am less than 6 weeks out from my due date with our 4^th precious son.  We can hardly wait!  But after being pregnant with twins and the fears of preterm labor, we are grateful for every week this little one stays in the womb!  Also, we praise the Lord that my high risk factors have not been an issue at all thus far in the pregnancy.  We are praying for a redemptive and peaceful delivery in a new hospital with new memories to be made.

-We continue to adore John’s new school and thank the Lord for it every day!  They have been working with his new communication device in addition to all the other amazing interventions they do there.

-The big news in Daniel’s life is potty training!  He has done very well so far!  Can’t take these “normal” developmental tasks for granted! 

We were beyond thrilled to host Katherine and Jay Wolf in our home in early November and have some friends gather to hear their amazing story.  Check out their inspiring website, Hope Heals.

Daniel has successfully transitioned to a big boy bed!

 This was our best Thanksgiving photo.  Haha!