Deposit of Hope

We had a very special time as a family both grieving and celebrating Warren’s 4^th anniversary in heaven on February 8^th.  We had the privilege of being where he is buried (or as we like to say, “planted”) on the actual day for the first time since he passed away.  Coastal Georgia is simply beautiful and we are grateful his earthly shell is planted in a place that reminds us of the Lord’s splendor and offers a glimpse of our eternal home.

This day is always bittersweet, and as the years have passed, Meade and I try not to have an expectation for this time….what we will feel, how we should respond, whether we will shed fresh tears or not…  We now simply try to be present, reflect on a cherished life, and look to the Lord to fill remaining holes.

We hug Warren’s marker, feeling the deep pain of parents unable to get close enough to their beloved child.  Some day I will reach out and feel more than stone; I will feel his warmth, feel his body whole, feel my joy indescribable.   

And in these moments, as we allow ourselves to deeply feel the love and to take in the pain, we are given a measure of peace.

All amazing photos courtesy of our dear friend, Dave Rathbone 

We wait for our home unseen… until this time, given a deposit.  A deposit of the eternal here on earth.  And a deposit of hope in His glory:

“And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”

(Romans 5:2b-5).

A hope that does not disappoint.

I am sure your portion may also seem hard at times.  And let me validate you: it is!  Jesus understands that.  Even He asked if His cup could be taken away (Matt. 26:39).  But as we look to the Lord and carry His deposit of hope in our hearts, we find our King is actually giving us His double portion of everlasting joy… something that can never be taken from us in this life or the next.  And we can learn to say, even if it is with fear and trembling, “Not my will Lord but yours be done.”

-----

We have some praise reports to share!!  Thank you as always for your continued prayers!

-John is sleeping much better at night!!  Therefore, we all are getting some much needed rest!

-A world-renowned neurologist/mitochondrial doctor came to town to speak to a group of parents, and he told us about some additional supplements for John to try that may help him. 

-John was approved for Medicaid!  This is great news!  Just to clarify, Medicaid has a waiver program for individuals with long term medical needs and disabilities.  It is funded mostly from the state but also somewhat from the federal government.  It basically helps to cover many medical expenses, copays, therapies, equipment, and medications that are not covered by our primary insurance.  A huge help indeed!

Lastly, here are a few prayer requests:

-Tuesday, John has an appointment with the seating/mobility/wheelchair clinic at the children’s hospital here to get fitted for a new stander, gait trainer, and possible other pieces of equipment.  (And last week, he was casted and measured for leg, arm, and torso braces that will be used with different activities.)

John is a good sport, as always!

-John has a BIG doctor’s appointment on Wednesday at 2:00 with Dr. Shoffner, the mitochondrial expert who performed and analyzed John’s muscle biopsy in January 2010.

-For John’s mobility

-For guidance about what we should focus on in John’s daily therapeutic activities

-For an upcoming therapy trip in April which will focus on reflex expression and integration.

(Scroll down to see cute pictures at the bottom)

“The Spirit of the Sovereign Lord is on me,
 because the Lord has anointed me to preach good news to the poor.
 He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s favor and the day of vengeance of our God,
to comfort all who mourn, and provide for those who grieve in Zion—
to bestow on them a crown of beauty instead of ashes, 
the oil of gladness 
instead of mourning, 
and a garment of praise 
instead of a spirit of despair.
 They will be called oaks of righteousness, a planting of the Lord 
for the display of his splendor.  Instead of their shame 
my people will receive a double portion,
and instead of disgrace 
they will rejoice in their inheritance;
 and so they will inherit a double portion in their land, and everlasting joy will be theirs.”

-Isaiah 61: 1-3, 7

First professional hair cuts for both John and Daniel!   

Finished product!

Daddy and Daniel

John pulling off the ribbon to a birthday present all by himself!  John is one special boy to get to celebrate his birthday for over a month!