Tuesday, August 21, 2012

The Gift of Years, Part 2

In my last post, I mentioned that there are certain gifts the Lord brings through the passing of time.  Contentment is one gift that the Lord has gradually sewn and grown in me over the past few years.

Yet there are other gifts I long for that can seem to remain just out of reach. 

Earlier this summer, we were at a church we have been visiting in Atlanta.  The pastor handed out a piece of paper containing suggested Bible readings for the week.  Before the service had ended, I decided to flip to that very Sunday’s reading: Psalm 121.

My eyes immediately fell on verses 3 and 4, and my kneejerk reaction was one of disgust and deep hurt.  (Which then led me to feel very uncomfortable and guilty, because I can’t stand it when my reaction to the Scripture is so negative.)  

I saw my handwriting in the margin of these verses: “January, 2009.”  I had claimed these verses for my twins in their first days and weeks of life:
“He who watches over you will not slumber; indeed He who watches over Israel will neither slumber nor sleep.”

This was the passage I used to comfort myself as I left my children, my beloved sons, every night in someone else’s care in the NICU…  and every day when we were forced to leave for an hour during each shift change.  I told myself and others told me too, “You don’t need to worry; the Lord who cares more about John and Warren than you even do is with them.  He will neither slumber nor sleep.”

After finding out Warren died due to an accident, I couldn’t even bear verses like these.  But I still needed the Lord… He was all we had.  So I chose to ignore these verses, finding new ones to cling to and request of the Lord. 

Another verse that fell into the former category is Job 1:21:
Naked I came from my mother's womb, and naked I will depart. The Lord gave and the Lord has taken away; may the name of the Lord be praised.”    You may even recognize this lyric based on this verse from a popular Christian song: “He gives and takes away, yet my heart will choose to say, ‘Lord, blessed by your name.’”

Indeed, it is hard for me to go there.  It is still hard.  I may feel increasing contentment on most days, but I can’t necessarily reconcile my heart with these types of verses.  Instead, the questions abound and I wonder where God was when my son died.  Was He asleep on the job?  And where has God been through our struggles, when we feel all alone and it seems those around us don't even understand?  Where is God in John’s life, when the miracle only seems halfway complete? 

So what gifts do I still long for?  Why did the Lord bring me back to Psalm 121 earlier this summer?  I think it was to remind me that I do still yearn for these verses to not only permeate to the depths of my being but to also bring forth hope.  Rich hope.  Hope that is founded in TRUTH, not in my limited experience and understanding.

The Lord revealed to me that week in June that I may not comprehend the intricacies of every verse with my finite mind.  HOWEVER, I can grasp the overarching themes throughout the Bible, which happen to be accurately portrayed in these passages. 

God IS good.  His name IS to be blessed.  He does care and watch over us.  He is intimately involved in our lives.

Which leads me to the “Part 2” of this post…  My mom sent me a great blog post by Beth Moore a couple of weeks ago.  In this post, she wanted the “big sisters” of the faith (the women over 40) to encourage the “little sisters” (which includes me).  She basically gave us all a pep talk, encouraging the little sisters to reach out for support while demanding the big sisters lay their problems and prayer requests aside in an effort to simply stand firm in their faiths and use this anchor to encourage the younger ones.

Beth wrote to the big sisters, “You and I have lived long enough to know that we’re going to make it and that God IS going to be faithful and He is INDEED going to bring beauty from ashes and He will most certainly, given enough time, work every single detail out for our good and His glory” (emphasis mine). 

Wow, I tear up now re-reading that.  What profound truth.  And you know what the Lord did for me as I read that passage?  It’s as if He said, “This is a deposit guaranteeing what is to come.  It has only taken a few years, and you feel increasingly content.  Now look at Beth Moore and these older women of the faith… they have also been through pain and hardships.  And yet, look!  Here they are, able to lay their problems and their past aside and boldly proclaim that I am faithful! That I do bring beauty from ashes!”

I realized I may not be there yet. I may have days when I can say what Beth did and believe it, but there are many days I just can’t if I’m honest.  When I simply cannot read certain passages with a good attitude or the right perspective. 

Nevertheless, I have hope.  I have hope that with additional years will come additional gifts… the gift Beth Moore spoke of, the gift of choosing to bless His name when He gives and takes away, the gift of knowing He isn't asleep on the job, and the gift found in the following verse.  A verse to aspire to and live by.  A gift that combines where God has brought me thus far and where He is hopefully bringing me as the rest of my life unfolds:

“Godliness with contentment is great gain.” 
1 Timothy 6:6

Lastly, if you read the final part of Psalm 121, verses 7 and 8 state, “The Lord will keep you from all harm —
He will watch over your life; the Lord will watch over your coming and going
 both now and forevermore.”

There is something comforting that this passage both acknowledges the “now” and the “forevermore.” Our lives here and our lives in heaven. Like Warren, like others gone before us, and like you and me too, I am encouraged that, of all people and all objects and all entities across time and space, it is THE LORD and none other who watches over our comings and goings both now and forevermore...  Blessed be His name.

Gifts of the Garden (from my Daddy John's that come with time)
 My little gifts:

John in his stander.  This helps him bear weight on his legs, to strengthen his bones.  It also stabilizes his lower trunk so he can focus on improving his head control and use his hands to reach for toys.

Thursday, August 16, 2012

The Gift of Years

Today, I am attempting to pause, reflect on the past few years, and thank God for how far He has carried us.

One of the greatest gifts that has come out of the trials, prayers, unknowns, and eventual resolve, is the gift of contentment.  Are we always content?  Certainly not.  Does contentment remain a daily struggle and desire?  Of course.

Let me give you a little glimpse into the past four years of my life through this magazine…

This is one of those magazines you get for free by submitting your info when you are pregnant and registering for baby items or purchasing the oh-so-wonderful maternity clothes (sarcasm here). 

Well, being the eager beaver that I was during the first pregnancy and due to the fact I was on bed rest for over 5 months (starting this exact time four years ago), I devoured literature like the one shown above, read every book I could find on twins, and perused the websites that came forth in my Google searches.

Yet when my world came crashing down with that first seizure after the twins were born, and with the tubes, the incubators, the ventilators, Warren’s death, and John’s struggles, my world stopped but the magazines continued to flood my mailbox. 

I’d try to flip through them only to collapse into a puddle of tears… giving into both the anger that life hadn’t turned out my way and also the extreme sadness of unrealized expectations, worst fears come true, and the debilitating pit of comparison. 

This magazine, like the charts in the pediatric office, spoke of milestones my son wasn’t achieving.  It showcased mothers all smiles as their children took their first steps.  It gave advice on age-appropriate activities to engage your child in as he grew. 

I couldn’t take it.  The magazines continued to come, but I knew my best bet was simply to toss them in the trash before the triggers could mount and I was left stripped of my strength to make it through that one day before me…. the grief, therapy, doctor’s appointments, attempted phone calls, chronic worry over John, and the seemingly bottomless hole in my heart left from Warren’s absence on earth…

Well, the years have passed and while there is still pain and holes surely remain, the pain is not as raw and the triggers aren’t as strong or as frequent.  John has stabilized despite still needing prayer and additional miracles.  Our marriage has grown stronger through it all.  We have cherished our moments with John, drawing so much joy and worth from being his parents.  Furthermore, we realized our family wasn’t a broken mess but that it could be a blessing we could extend to future children.  And we were given the gift of Daniel. 

We were birthed into parenthood with hearts for multiple children.  And one must prepare for life, not death. Then when Warren died, we still had two sons but only one on earth.  One baby to take home (even if that didn’t come until 3 months of age), one car seat to fill, one crib to sing lullabies over, one baby to dedicate in church.  Our hearts ached, empty and mourning even while grateful for John’s presence despite his tentative future.

Back to the present day… What a gift our little boy, Daniel, is!  He doesn’t replace Warren; we still have 3 children.  But now, through Daniel, we have multiple children on earth...  something our heart desired and was prepared for from the start when we found out we were having twins (and even prayed for and sensed it before we witnessed it on the ultrasound screen). 

It feels good, so very right to be a family with two kids here on earth.  Moreover, it struck me sometime in the last year (probably after I got some sleep once we let Daniel "cry it out" as a 4 month old!), that there was a new feeling in my heart.  A feeling of contentment.  Not perfection, not having all the answers, not filling all the holes, not forgetting the past, but I now had some contentment…deep down.  

Contentment the evil one can not rob, contentment that allows me to be excited for my friends’ pregnancy announcements rather than experiencing both joy for them but also the unwelcome rush of sadness, comparison, and feeling behind in my number of children on earth.

And for whatever reason, once we moved to Atlanta we started getting Parents Magazine in the mail again.  Just out of habit, I threw the first few out.  But then, it came one day and I didn't feel like I needed to throw it away.  So I added it to my magazine pile.  A few weeks ago, I took John to a doctor's appointment (with his new holistic doctor here who we just love!), and I slipped the magazine into the diaper bag in case there was any down time at the appointment.

Here, John and I are flipping through the magazine, his little hand on the little boy on the cover, mine to the right.  It hit me at the doctor's office that day: the Lord is healing my heart... one day at a time.  The ability to simply flip through this one magazine was evidence of the greater work going on inside me. 

Contentment is the gift our sweet Daniel has brought.  The gift you sometimes only get through years.  Through the passing of time.  Through the perspective and healing time brings.  Time may not heal all wounds, but God works in and through time to massage our hearts, pour His balm into our wounds, and let us know He is there, He cares, and there is joy yet to be had… even in an imperfect world.  There can be joy.  Peace can be found.  Contentment can be ours.

Part 2 to come…

Monday, August 13, 2012

Diagnosis and Prognosis

“No one who hopes in God will ever be put to shame.”
Psalm 25:3

(First of all, I apologize for the blogging hiatus.  I had to send my computer in to be repaired and life is busy, as I know you can all relate!)

So what does John actually have?
Good question!
This is something you don’t hear us speak of often…  Not because it is a touchy subject but because we haven’t always known the answer ourselves and because we don’t particularly think labels are that helpful in John’s case.

Like many other parents we know, we do not like to define our son as a “special needs child” or as disabled but rather as a child with special needs and certain challenges.  First and foremost, he is John, a beloved child of God.  His special needs are just a part of his story.

John and his twin, Warren, were born healthy but on their second day of life they began having seizures.  (Feel free to skip to the final 1/3 of this post for the conclusion….there is a lot of medical jargon coming up!)  John (and Warren) was diagnosed with nonketotic hyperglycinemia, which he then tested negative for after coming off his ventilator.  This has been the same story with several other devastating diagnoses: Ohtahara Syndrome with a burst-suppression pattern EEG, Dentato-olivary dysplasia, various metabolic and genetic disorders, neuronal migration problems, and Leigh’s Disease (a severe and progressive mitochondrial disease) in early 2010 at a year old.  Look up any of these terms if you want a scare.  He actually did have some of these diagnoses but was miraculously healed.

More recently, the Manton Center for Orphan Disease Research at Children’s Hospital Boston sequenced all 20,000 of John’s genes and ours as well.  At first they believed a mutation of the PLXNA3 gene to be the cause of John’s problems.  We found this out last October in Boston when Daniel was just 3 months old.  They said we were very fortunate Daniel didn’t have this mutation, because it is passed through the mom (X-linked) and therefore you have a 50% chance of a boy getting and therefore expressing the mutation or a girl carrying it (but not being affected due to having two X’s).  That was a lot to process, having just had another baby and still planning to have more children down the road.  NOT that we find any children with disabilities a “bad” thing (clearly, we adore John and Warren, problems and all), BUT it is another thing to wish medical challenges and suffering upon your unborn children.  We’ve been there; it’s terrible to witness your children in pain.

Thanks be to God, we later found out that someone in my family actually does have that mutation but is clearly healthy and so we ruled out that mutation as the cause of John’s (and Warren’s) problems.  Another gene was found to be mutated, this one extremely rare as well but known to affect the central nervous system: SCN1A.  It took awhile for Boston to find either of these genes because they were initially looking at every gene related to the mitochondria, still assuming that was John’s primary problem.  They were VERY relieved, as were we, that none of those tested positive and John’s mitochondrial issues are actually secondary but not the primary cause of his problems.  Primary mitochondrial disease can be brutal… kids get worse over time and merely plateau at best.  We never felt John had a primary mito disease because we have seen so many positive changes and miracles: No regression, only improvement in development (even if slow), seizure-freedom, medication-freedom, a perfect MRI that was once abnormal, a normal EEG that used to be the worst possible one, etc.

Now based on John’s symptoms and tone, he could probably be diagnosed with Cerebral Palsy or other diagnoses.  But he hasn’t received that diagnosis and again, it’s not helpful in John’s treatment at this time.  CP, like other diagnoses, are brain injuries.  And from the beginning with all the seizures, we’ve known that John has a brain injury, regardless of the cause, and that was enough for us in terms of treatment.  We found the Institutes for the Achievement of Human Potential that evaluates children with all sorts of brain injuries (genetic, traumatic, ADD, autism, stroke, oxygen loss, CP, Down syndrome, etc.), and what a relief it was after so many confusing diagnoses and prognoses to be told, “Congratulations, your son has a brain injury.”  I know that sounds strange, but when you finally focus in on the source of the problem you can then focus your treatment…. To treat the BRAIN rather than the myriad of symptoms.

Current diagnosis boiled down:  Genetic brain injury causing secondary mitochondrial disorder along with developmental delay

Prognosis WAS:
-Death  (yes, many doctors said John would probably not live to see his first birthday)
-Epilepsy and completely sedating drugs as the norm for John
-Mental retardation
-Need for feeding tubes, breathing support and invasive medical care
-Regression in development…plateauing at best but not further development

Current medical prognosis:
-“John is writing his own book.”
-May catch up and do everything normally; may not.

God’s prognosis:
With God, ALL THINGS ARE POSSIBLE!  (Matthew 19:26)

We are also grateful that giving up the illusion of control (something that is truly impossible for us at times!) is possible with God, and that He graciously enables us to have moments, days, and weeks where we trust that HIS plan for John and our family is best.  Thank you for your continued support and allowing us to share this medical update to give you additional insight into how to pray for John.

We also have many praises to report:

-We found a swim therapist who started last week, and she is wonderful!  John has loved his first two sessions with Miss Kate!  The water is very healing and a great place to stretch and practice skills with the support of the water.

-John, who rarely speaks, said “Daddy” very clearly a couple of weeks ago when trying to get Meade’s attention when he was feeding both boys their dinner.

-John is sleeping much better at night!!  This has been a challenge most of his life and we are so thankful we are all getting a little more rest!

-We are starting John’s home program (through the Institutes) back up September 1st!!  And it is a new program that is a little less intense and time-consuming, which worried me at first but I think it will be a perfect fit for John and our family…exactly what we have been praying for!  And God has provided!

Recent trip to the Georgia Aquarium!
We went to a local therapy/fun center for both typical kids and kids with special needs with the local Mom's Mitochondrial group.  I was kind of nuts to attempt going by myself with both kiddos but I'm glad we went!

John on the platform swing at the center.

In the ball pit.  These balls light up with different colors.  This is in the sensory stimulation room.

Bath time is always fun!  This is the chair John sits in when the boys take a bath.

Wednesday, August 1, 2012

All Things New...

I love catching glimpses of the Lord making all things new!

Look what "burst forth" in our backyard after just a few days out of town (Reminds me of a line in the hymn, In Christ Alone... see link at the bottom of this post):

This smaller creature was also found:
Okay, I have to add a little joke here in honor of my cousins on my mom's side of the family...
What did the snail say when he went for a ride on the back of a turtle?    Weeeee!!!!

There is nothing like fresh flowers to bring joy!  
The window box we planted over the weekend:

In Christ Alone
This song is very special to us; we sang it at Warren's funeral service.  So grateful that neither Warren nor any of God's children can ever be plucked from His hand.
(Email subscribers, click here to listen to the song.)

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.