Watching You Sleep

I quietly slip into John’s room, checking him one last time before tucking my own weary body in bed for the night.  I look at my boy, curled up on his floor mattress, bed rails in place, and he looks so… small.  

Another special needs mom (it’s a handy way to refer to myself and those in this tribe) once remarked that the closest she came to envisioning her daughter healed and whole, as she will be one day in heaven, was when she observed her while she slept.  It is very true.  High and low muscle tone no longer visible.  Limbs not as contorted.  Hands and feet at rest.  All manner of moaning and sounds hushed.  Rhythmically breathing in and out. Lying down as anyone does while sleeping. 

I love to steal glimpses of my sons while they sleep peacefully –almost as much as their Daddy does.  There is something magical about it.  I have countless pictures of them in this state (and I usuallyremember to turn the sound and flash off of my phone). Sometimes their positions make us howl with laughter.  Other times the simple breathing brings such relief as the panic can rise in my chest as I approach their beds.  Some slumbering scenes are so beautiful that they simply take my breath away, in the best kind of way.  

 These pictures of Michael are definitely the "howling" category.  This child DOES have a bed... I include the bottom left photo for proof.  However he much prefers this old lazy boy (or the floor behind it!) from "The Dump" - the same chair I lounged in 12 hours per day while on bed rest for almost 6 months with the twins. Oh, and he definitely took off his pj pants in the main photo and put this shirt on his legs instead.  Ha!

Just a few months ago, John was fast asleep and he looked so much like Warren (his identical twin in heaven) that I called Meade back to see for himself.  How I “know” what Warren looks like now or would look like at John’s height and weight, I cannot explain.  I just knew.  Little things sealed in my memory.  The round face.  The way John’s lips were turning out.  That cherubic nose.  Time stood still in this “thin place.”  

Sometimes, it is not so easy to encounter the Sacred or get these glimpses of heaven on earth.  Monday night, John just looked small. Fragile, vulnerable, exposed. And he is small. 39 pounds at 9.5 years old.  I feel like he has been 39 pounds forever.  In that moment, all I could see was John’s disability, all I could feel was sad, and all I could think was, Why?  That futile question that continuously pops into all of our minds more often than we would like.  Oddly enough, the haunting question that makes us doubt both God and ourselves is also the mystery that pushes us to lean in a little closer, to look a little deeper.

Logically, I know why.  I know the head and church answers.  We live in a broken world.  All is not made new just yet.  God has greater purposes that we cannot always understand and may not ever understand this side of heaven.  He is weaving that frequently referenced "tapestry," and we only see that backside, a mess of tangled yarn.   

I know why.

But emotionally…. and on that gut human level… I will never know why.  

Why some get to live “full” lives and others do not.  Thinking and speaking people assert, “Who’s to say what a full life is?”   You mean well, and I hear you.  

And yet no one can hear my child.  What would he say?  People claim he has a full life.           

Would he claim that too?  

When Stephen Hawking died earlier this year, people railed against Gal Gadot’s innocent tweet tribute in which she thanked Dr. Hawking and stated that he was now “free of any physical constraints.”  She intended no harm, and I certainly do not believe she was outing herself as an “ableist.” (An ableist is someone who discriminates against individuals with disabilities.)  Many with disabilities spoke out with sharp disapproval of Gadot’s remarks.  And yet, as a mother of a significantly disabled son, I had to take note of the fact that those who spoke out are just that – those who could speak out.  They are the ones who have the cognitive abilities and at least enough technological abilities to speak or to type out. 

I had to throw my hands up in the air – what is wrong with wanting people in wheelchairs/with ALS/with communication devices to be “free”?  What is so bad about wishing life could be a little easier for those we love and respect, and even for those we don't?  For wanting those who do not have a voice to have one?  Political views aside, isn’t that what the cry for separated children is about?

Most importantly, isn’t that what the gospel is all about?   That Jesus came to revive us, speak on our behalf, and then give us a voice too?  Didn’t Jesus come to usher in a kingdom where all is being made new and free?  A Kingdom where we are called to participate in His redemptive work, praying His will be done on earth as it is in heaven? A world where we don't have to come up with cute euphemisms like “differently-abled” to take the place of the nearly outdated term, “disabled?”  

On earth as it is in heaven. 

I am neither discounting how God can use wheelchairs nor how much good can come from disability.  Additionally, I acknowledge how many men and women with disabilities and diseases come to a place where they wouldn’t trade that chair, that pump, that tank or that therapy. I applaud these brave souls; to God be the glory!  Disability can be a powerful, redemptive platform.  

Again, I know why.      And yet I do not know why. 

I behold my sleeping son on a random Monday night, desperately wanting to give him a voice – to hear his voice.   I tire of putting on the brave, happy front as I wheel my child through a crowd, as I field genuine questions from confused children, as I contemplate the juxtaposition of attending an exhilarating conference at Princeton one week and then a laborious (and mainly just depressing) training on augmentative communication the next.  And “oh yes, we are so grateful for John’s first power chair, and what a gift to have his communication device (going on 6 years)!” And oh yes, it is also… horrible.  A power chair doesn’t come with the knowledge, skills, and dexterity to operate it. Similarly, a communication device does not provide instantaneous, clear communication. And by the way, it broke down again this week.  Where is this oh-so-wonderful, digital voice when it has to be sent off for who knows how long to be repaired once more?

And so it goes.  We carry broken hearts, and we carry our son. As best we can, we attempt to help him put his best foot forward and to shield him from the weight of our sadness and from the broken interactions he encounters.

Our story is not wrapped up with a bow.  What's more, we are not in the final act.  But in this pilgrim journey, Jesus gives me a voice.  He is comfortable with my sadness.  After all, his heart broke first.   We weep, we sow, we cling to His promise (Psalm 126).

“My eyes long for your promise; 

I ask, ‘When will you comfort me?’…

You are my hiding place and my shield; 

I hope in your word…

Uphold me according to your promise, that I may live, 

and let me not be put to shame in my hope!”

-Psalm 119: 82, 114, 116   

Mother's Day.... Hopefully the first ANNUAL breakfast in bed tradition. :)

I finished this blog post yesterday and then received the sweetest gift from the Lord this morning and captured it on video. (Click HERE and scroll down to watch video if you're reading this via email blast.)  I had to share!  This is brand new....  John is doing a crunch (his shoulders are off the ground although it is hard to tell) while "peddling" with his legs; the alternating of the legs is HUGE!  

Procedure Update and Fuchsia Pants

We are now a little over a month out from John’s procedure, and I wanted to give you a quick update. All in all, John is doing GREAT, and we are very encouraged with the results we have seen so far.  Thank you for your prayers!  I wish I could report he is walking and talking already, HOWEVER the results and forward momentum we have witnessed are very significant for John.  As Jesus taught us, if we expect anything we build to last, we better have a sturdy foundation, right?!  (See Matthew 7:24-27.)

The foundation is getting stronger indeed. 

Here’s a list of everything we’ve noticed so far:

-Much improved appetite, eating more quickly, taking in more food, weight gain!! (we pray this continues… John is 9 years old now and right at 40 pounds.)

-Stronger trunk/abdomen; sustaining prop-sitting with minimal support longer and better than ever before.

-Increased weight bearing on his legs when we hold him under his arms. Additionally, John initiates many alternating steps in this position!  This will make the use of a gait trainer or walker possible and effective.

-Improved energy and alertness.

-Improved eye contact that is more immediate and more sustained.

-Much improved communication in general and specifically with the use of his communication device (which he also uses his eyes to scan and then select choices on the screen).

-Fewer startles and painful muscle spasms.

Two cute examples of the improved and more immediate communication: 

For John’s 9^th birthday (just 5 days after the procedure), he received an awesome set of instruments from one of his teachers.  The child loves music, and shaking a tambourine or banging on drums is something he can do by himself.  As children can be, John’s siblings were eyeing his new toys, and Daniel wanted to take an instrument off to play with it.  We told him he needed to go ask John.  Daniel went up to John in his wheelchair, inquiring, “John, can I play with your birthday gift, YES (holding up left hand in front of John’s face) or NO (holding up right hand)?”  John immediately hit the right/“NO” hand with a big smile on his face.  Ha!  Well, Daniel is pretty smart (and sneaky!) himself, so he asked John again but this time switched which hand stood for which answer.  John didn’t miss a beat and immediately picked “NO” that was now indicated by Daniel’s left hand.  We all chuckled (and almost burst out in happy tears) at this very age-apporpriate conversation between our sons, and we could tell Daniel was proud of his brother despite walking away instrument-less.

The second story has to do with John’s voracious appetite since the procedure.  He was flying through his dinner, and I asked him whether or not he wanted more.  He immediately brought his hands together and made the sign for “more.” I have never seen him sign anything that clearly or accurately.  I think I did cry this time (and let me add, I am not a big crier).  I was communicating with my son in such a real, accessible way.  We both were able to experience what it felt like to truly have a back and forth conversation.  In that moment, the communication frustrations on his part and the guesswork on mine were no longer necessary.

And this is where hope breathes in its fresh life.  A sweet sigh of relief when time seems to pause.  The hope that declares, our story is not over.  The hope from above that gives strength for another day and a childlike skip in each of our steps. 

Our stories carry pain.  They just do.  I will be the first to admit that and support you in those facets of your story.  However, because I have experienced the pain, I know our stories also carry hope.  And hope does not disappoint (Romans 5:5).

Thank you for standing by us in the story God is building in our lives.  Now, go out and share your story as well!  The Good, bad, and ugly all rolled in together, I imagine someone will be touched, and you will find your own foundation strengthened. 

“Let the redeemed of the Lord tell their story.”

Psalm 107:2a

Enjoy this video of John bearing weight and taking alternating steps!  Providentially enough, this happened on February 8^th, the 9^th anniversary of ushering John’s twin, Warren, from this earth into Jesus’ arms. (And on a lighter note, please excuse my pajama pants he is wearing!  We had a diaper incident earlier that day at the doctor’s office, and I didn’t have a clean pair of pants for him.  So the fuchsia pajama pants had to do!)

A 9 Year Old Warrior and a 6 Year Old's Faith

John turned nine years old on Sunday.  It is hard to believe he is nine but possibly even harder to believe that Meade and I have been parenting for over nine years now!   In her book Bird by Bird, Anne Lamott quips, “When a child comes out of your body, it arrives with about a fifth of your brain clutched in its little hand.”  So, if you do the math, that would leave me with zero brain.  Try not to laugh too hard! 

We always miss John’s twin, Warren, but January 21^st can be particularly challenging.  The Lord graciously provides in that it usually works out that John has something fun to do with a friend, another family, teacher or therapist on his special day— with amazing people who adore him and who do not carry the same mixed emotions we carry into John’s birthday.

This year John’s beloved “K/Caties” (Katie, his devoted physical therapist of 5 years, and Catie, his former teacher and dear friend) planned an entire day to take John to the Georgia Aquarium.  They were so thoughtful and wanted to make sure he had his communication device and his best chair, which required them to take our handicap van.  As an aside, my grandfathers passed away a little over a year ago (on the same day – January 12, 2017), and one of them left his handicap van to John.  The timing was perfect and not something we could have anticipated, as you always imagine these next steps to be a ways off.  What a blessing it has been!   Anyway, you can see that John had an absolute blast on his birthday.  Thank you Catie and Katie!!

 Next, we want to thank you for your faithful prayers and for checking up on John since his procedure last Tuesday.  I also have a cute story to share following the medical update.  I am sorry I haven’t been able to share many details.  It is a slightly sensitive matter in that this procedure is still experimental.  We have been following the work of a premier medical institution for over seven years hoping John would eventually qualify for one of its clinical trials. Over the years, we have seen that this procedure is completely safe for children with cerebral palsy and that many trial participants have had positive outcomes, some gaining speech and significant motor function.  However, John has yet to qualify for the trials for various reasons. 

We still hold out hope that at some point John will get this treatment through a federally funded trial, but in the meantime we were able to find a way to privately access this treatment.  Even better, we were able to do this locally with no subsequent down time for John (we have known several families who have had to travel outside the country for similar treatments).  It consisted of a simple IV transfusion that lasted about twenty minutes.  John was so brave and kept his chin up; he truly is a warrior, the most inspiring one we know.  We were so grateful to have this opportunity, even if it amounts to nothing.  It could take several months to see if there is any improvement.  Regardless of the outcome, we know John is worth it, and we hope he always knows that we will never give up.  Feel free to email me if you want a short blurb with a few more specifics.  Thank you for your continued prayers!

Now for the cute story. Prior to the procedure, we were explaining as best we could to the boys what was going to happen to John.  We encouraged them to pray for John, and we would all take turns.  We explained that we were praying the procedure would even help John talk and walk.  As you know, it was delayed on Tuesday, so I ended up being the only one with John when it actually took place, and Meade was with the other three boys (they had a big time at the park, Home Depot and Mellow Mushroom).  Over pizza, Daniel piped up, “Daddy, I hope John talks and walks!” 

It would be several hours before John and I made it home.  I came in wondering where Daniel was, and Meade reported that Daniel had said he was tired and had put himself to bed (something that has never happened in his 6.5 years of life).  However, after a few minutes, Daniel quietly came downstairs and started studying John.  I greeted him but he kept his eyes fixed on John, expectantly saying, “I want to see John talk.”  I was confused at first, but then realized that this precious child with his simple yet profound, take it at face value faith trusted that the Lord would use this treatment and our prayers to heal John.  He fully believed he would come downstairs to finally hear his brother speak.  I held him close, told him how sweet that was, and explained that this procedure was hopefully part of the healing but that it would probably take some time; I encouraged him to keep praying as all miracles aren’t instantaneous.  Daniel quickly slipped back into bed, having accepted my explanation but not realizing what an impact his childlike faith made on Meade and me that night.  Is that not a precious and pure picture of how God made us to be and how He wants us to be, even after life has knocked us around a bit (or a lot)? 

I may have lost some of that pure and instinctual trust, but my heart resonated with my son last Tuesday night.  My spirit quickened as I recognized a quality I desire to possess.  That is how I want to approach my Abba Daddy who calls me his beloved.  I want to trust that He has the very best in mind for me, that His ways bring life, and that He has the power to bring it all to pass.  

“For those who are led by the Spirit of God are the children of God. The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, ‘Abba, Father.’ The Spirit himself testifies with our spirit that we are God’s children.  Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.”

-Romans 8:14-17

By the way, this little cutie Andrew turned 4 on the 9th!  

We sure love you, buddy!

Procedure Update

We are home, and John did so well with his procedure this afternoon!  It happened around 3:30 pm, and besides having a few extra pokes to get good IV access, all went well!  He is a trooper for sure!  We were grateful for this opportunity and are praying for miraculous results in the weeks and months to come.  I hope I can fill you in on more of the details soon.  For now, thank you for your prayers, words of encouragement, and support!

John was so positive and such a good sport!

Meanwhile, Meade and the other boys had a big time at Home Depot!

Procedure moved to this afternoon!

Wanted you all to have the update that John's procedure was delayed, but we should be all set for this afternoon.  Thank you for continuing to pray for John and our family!  We will send an update when we can.  (Please scroll down for yesterday's post or click here.)

When the Bible Pours Salt in the Wound

“Before a word is on my tongue you, Lord, know it completely…  If I go up to the heavens, you are there;  if I make my bed in the depths, you are there…  For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”
-Psalm 139: 4, 8, 13-14

There are different scripture passages I have struggled with since the twins’ birth, Warren’s death, and in light of John’s chronic struggles.  A minister at our church tackled one of these passages on Sunday: Psalm 139.   This is the kind of passage that gives you warm fuzzies pre-pain or pre-disability but can add insult to injury or create confusion post-pain. 

On the one hand, we are encouraged by the sentiment of being fearfully and wonderfully made, of being uniquely knit together in our mothers’ wombs, known intimately, and that God is always with us no matter what.  But then there is the rub.  Was John (or others with serious congenital problems) also fearfully and wonderfully made?  Did God knit him together in this specific way, becoming the cause of his pain and struggles?  Is He the reason my son cannot sit independently or feed himself, let alone walk or talk?  Jesus healed so many, even brought individuals back from the dead.  Why has His full healing touch not fallen on my son?  Is he (and are we as a family) not as loved or as chosen as others?

I have found that these questions, and how we view suffering in general, fuel a heated and specific debate within the faith community.  What does God cause versus allow?  When is God to blame rather than simply blaming our broken world?  Some assign credit to God but in a way that draws security and meaning from trusting God wanted a person to be born a certain way or come across a certain illness or struggle in his lifetime.  I find some Christians promote or even demand this view of God’s sovereign involvement, the notion that God, of course, orchestrated every single aspect of how someone was “knit together” and that He planned certain struggles in order to point people to Himself. 

If you fall in this camp, you gain more comfort believing God is in control of the struggles than in believing God did NOT cause these struggles. I call this “the everything happens for a reason” camp.  Those in the other camp are horrified at the idea that a good God could be responsible for such deep pain and suffering.  Instead, they believe we are responsible as sinful human beings, Satan is responsible, and/or our fallen world is responsible (going back to Adam and Eve and original sin), depending on each individual scenario.  You can find Scriptures to support both views, at least at first glance, and perhaps at final glance as well.

I tend to fall in the second camp, believing that while God is all-powerful and is intimately involved in our lives, He is not the source of our pain and suffering.  Instead, He came to take away all pain and suffering and reconcile our hearts to His, which is why He sent His Son Jesus into the world.  In a broken world due to Adam and Eve’s rebellion, we needed a Savior to usher in God’s redemptive and healing work.  God did not give up on us, just as we are called not to give up on Him even as we await the full consummation of His restorative plan.

There is SO much more to say on this (we haven’t even touched on the fact that God created time and is outside of and over time, while we as humans operate in linear time with limited understanding…), but I knew the timing of yesterday’s sermon on Psalm 139 was significant seeing that John is having a big procedure this Tuesday morning.  After all these years on the cerebral palsy journey, new treatments like this one bring these types of questions to the forefront of my mind and heart. And with those questions come all the emotions, hopes, dreams, fears, and the balance of praying with bold faith versus guarding my heart and not getting my hopes up for fear my mama’s heart and faith in God would not survive another blow. 

Even though I may doubt from time to time or find myself disappointed in God’s ways or simply in what He allows, as I sat in church yesterday, I realized my heart’s inclination is to trust, to find solutions, and to have a passage make sense in light of God’s goodness and not merely in light of our pain. 

As for John and this passage, we inhabit the tension.  John is both fearfully and wonderfully made and is also someone, like all of us, whose body has been affected by the fallen nature of this world.  God loves and intimately knows each one of us; part of this is His knowledge that our bodies, in their current state, are frail best understood as “dust” or “grass.” We will all age and die.  God also knows we are His beloved masterpieces created to do good and wonderful things (Ephesians 2:10) while also being frail and feeble when it comes to our attempts to uphold morality, justice, compassion, and love.  And yet with God, there is hope for our many failures because “even darkness is as light to Him” (Psalm 139:12). 

And so we carry on.  We pray for light to shine in our dark places.  With our limited understanding, we pray for John’s healing in this life and for God’s hand on the treatment he will receive tomorrow morning.  His Kingdom come and will be done, on earth as it is in heaven.

“The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.”

-1 Samuel 16:7