Reflections from the Heart of a Papa

A lifetime isn't enough to love you...

When I was a child I would have never imagined that I'd be right here, right now with you. You are an unexpected gift that I never even knew that I had. In fact, at times I truly believed you were the exact opposite. I just didn't know how to reconcile you with my own heart and I was also to overly concerned with my own selfish pursuits that I almost missed out on everything that I now deeply cherish. You've been hope in my darkest hours, drive and purpose when I wanted to quit, you were part of the glue that held our family together and you never even knew it. When I was dead set on running, it was you that pulled me back with just a simple gaze. How could I leave you? Where could I escape from the thought of you? No where. I've been smitten by your joy and your gentle smiles. You've brought me joy in the most remarkable way through the most curious process. Yes, most curious. You were ever so gracious when I treated you poorly or unfairly. Only ever coming back to me with love. And I have to admit, I truly was unfair at times because of my own personal anger issues. Something that you didn't have anything to do with but suffered the consequences of. I know now that It's my choice whether or not to be that man again, but I'm so sorry for being so tough on you sometimes. My heart was that I wanted the best for you, but the way I went about it was poorly executed. I would've done better just loving you and meeting your heart right where it was at.

I see that now and thank God for you daily and often more than that. But see, in order to give unconditional love, you must first understand it. You need to receive and accept it in some way before you can even think about giving it away. It must become experiential knowledge in your heart. It truly is a gift...I just never had been able to truly accept it. So I simply didn't know how to give it to you. But now I do and I will. I promise to spend the rest of my life dedicated to helping you experience a relentless, unconditional love that has no strings and no boundaries. If this is the only thing that you ever gain, you will have more life than you are capable of imagining.

Our future is filled with hope and purpose. Greatness and adventure are knocking at our doorstep! Awaiting our companionship! They have chosen us because we have chosen love. I'm inviting them in without putting any pressure on you to do anything. I just want you to see and to experience the the most of what life has to offer. And whatever that looks like, and at whatever pace, we will always look for the love in it. It's always the key to a level of happiness and satisfaction that most people only ever dream about. So I ask, could you be love, and be loved? For in that lies true freedom, success, greatness, favor, rest, and most of all... deep satisfaction in life itself. The kind where there isn't an ounce of worry to be found for miles around. It's exciting to me that we get to spend the rest of our lives getting to know each other. Hopefully always as pals. But I promise that I'll never stop loving you. I am pleased with you, I am satisfied with you, I greatly approve of you, and I desperately love you dearly.

I've had the privilege to watch you as you've unwittingly created hope and unity. You lift everyone's spirits without even trying. It's just part of who you are. It just comes natural to you! WHO ARE YOU?! I love it! I don't know a single person who isn't touched by your presence! The joy you constantly display is addicting! I can't help but want to be around you. I don't know a single person who doesn't love you after they've met you! Every friend or family member I have has been touched by your spirit in some way or another for good. Because of you, people have come together from all over to support you and to spend their own resources simply to help you. I really am awestruck and dumbfounded that such a gift almost passed me by. It actually makes me laugh a little. Thankfully, God has given me favor and forgiven my foolishness.


I've never told you this, but for some time now you have become something to me that I never
expected you would become. All this time I've thought that I was supposed to be your hero.
But it turns out that you have become mine.
And for that I will ever be grateful.
So to you, my eldest son, Levi...you are my hero and I love you just the way you are.
Your surgery is in 6 days but fear not. For I will be with you the whole way.

Love, your dad. ❤

Heartbreak Meets Assurance, 11 Days to Go!!

To be completely honest I've been dreading this post!  The wide array of emotions and processing of what is to come has been pushed to the back-burner of daily life, yet the days keep counting down and even Levi counts backwards each night - "Levi how many days until surgery!?"  "Eleven days, ten, nine...., three, two, one, zewo!".  Through his broken speech and tight little fingers trying their darnedest to mimic the days left I feel my Jesus calling me into quiet reflection.

An exercise of the heart that's easier said than done!

Last month when we toured the rehab facility that we will call home for the 8 weeks after Levi's surgery the weight of our journey brought Mike and I to heartbroken tears.  The small little bodies facing pain beyond their comprehension was hitting us like a freight train, from room to room we just soaked in the fact that this would be us soon, and the sterile halls and crying little voices just brought us to the end of ourselves.  The drive home was mostly silent and occasionally we would simply say, "This is a lot".

The truth is that I'm nauseous now writing about the future fast approaching.  I choose to be honest and authentic here and now, trusting Jesus that my emotions are A-OK and I wouldn't be human otherwise.  It's interesting however that my faith and freedom in Him have never been stronger.  I know who I am more than I have ever before.  I love that.  I love that it's not one or the other, a tested and proven faith held and showcased by a "Godly woman" that produces a calm, steady and settled outlook OR a hot-mess momma feeling completely overwhelmed, physically/emotionally/mentally frantic most-often, and teetering on the edge of a breakdown (you know the ugly kind that makes people pat you on the back and say they'll pray for you before awkwardly walking away and taking note that the "How are you?" was more of a greeting than a genuine question).

I am both - and I'm loved like crazy in the midst of it.   By my husband most certainly, by my family and friends and without doubt by this Jesus who surely walks alongside of me during the ups and downs with my hand in his.   Messy yet confident, overwhelmed yet settled,  scared shitless yet I feel joy to the core of my being (did she just say that while speaking of Jesus!?).

I am torn apart by the pain I will see Levi in.  I am heartbroken by how much time I will have to spend away from the other two little souls I have the pleasure of raising and enjoy thoroughly.  I am stressed at how much commuting we will have to do in order to make our promise to Levi possible:  Mommy or daddy will be with you EVERY.  SINGLE.  STEP.  of the way.  I am worried about the pressure and stress our marriage will be under during the next 2 months,  let alone the road beyond that when we bring him home.  I am grieving over the suffering and brokenness we will see, especially in the lives of children.

HOWEVER - however.  The {SURETY} that I feel in one simple yet profound fact is enough to make the entire paragraph above fade into the background.  I can EXPECT God to show up.  I can.  He will, and my friends I can assure you, that is ENOUGH.  And you know what I'm really looking
forward to the most?  The lack of pressure I will feel from Him to be stronger, more full of faith, or whatever lies I've told myself through struggles before.  I truly believe that he desires nothing more from me than my heart.  He wants my mess and my hurt and my aching.  He wants me to yell in the car (or angry cry) while I drive home from an awful day or fall to my knees in sobs of praise when my baby takes a step - and everything in between.

I guess that where my heart is is this:  I'm ALL over the place, and I smile writing that.  God made me so deep and intricate, so full of feeling and compassion, so quick to come alongside of those who suffer... and each one of those marks were put there to bear the image of the One I love and feel honored to resemble.

THANK YOU for being on this journey with us, genuinely from the bottom of my heart.  I can't communicate in words what it means to our family to not feel alone on an island.  Quite the contrary, we feel like we are at a giant family reunion meeting person after person with whom we share an unexplained love and connection!  We've been humbled beyond measure to see all of the activity on our GoFund Me and I've been receiving personal texts and messages so often, each person who reaches out in their own individual expression is impacting our hearts deeper than you can imagine.  MAD LOVE TO ALL OF YOU!!  

SDR Journal: Please Join our Journey!

To all who have supported, followed, encouraged, held our hearts, received Levi's smiles deep into your soul, maybe shed tears, prayed, babysat, cheered for and loved our family through your own expression: thank you does not communicate our hearts sufficiently.  You are God's hands, feet, heart and comfort here on earth.  A humble thank you from our hearts to yours.  

This is the beginning of my SDR Journal - a virtual way to let you into our lives over the next year as our family embarks on the hardest yet most rewarding path!  A place to process emotional highs and lows, somewhere you can learn more about the Selective Dorsal Rhizotomy (SDR) spinal surgery through our eyes/pictures and lives, a place to communicate our needs for anyone desiring to partner with our family through prayers, finances, meals, babysitters, etc., and also something for Levi to look back on when he can understand what on EARTH went down!    

After the 3-5 hour surgery that will take place probably in late January or early February, he will be on complete bed rest for 3 days so his spine can heal.  He will have a catheter, he will be in a lot of pain, and he will probably be very confused.  The body he went to sleep with will be gone and he will have to learn, almost from scratch, how to use his newly functioning legs.  He will live at the inpatient rehab facility for 6-8 weeks and we will stay with him as much as possible while we trade shifts.  It will be intense, it will be stressful, it will be heartbreaking at times.  But it will also be the beginning of the rest of his life with more mobility and it will be a major step forward in his Fight to Take Flight.  

The road ahead for Levi will change dramatically over the next year and much of the future is unbeknownst to him.  I want him to have these writings to reflect on later in life, so he can truly understand the depth of courage, strength, resilience and determination that resides in his character as a result of who God made him to be as he walked the road God asked him to walk.  I pray that as he reads these journals one day he can see himself through our eyes for the amazing child that he was.  

The child who kept climbing, no matter what.  

The child who smiled through the pain.  

The child who won rooms over wherever he went.  

The child who fought.  And fought.  And fought.  

The child who conquered whatever was set before him - and after seeing all that he accomplished my prayer is that he would thank God for the opportunities afforded to him, the life he has to look forward to, and the community that rallied around him when it mattered the most.   That he would turn to praise.  That he would be a mere reflection of the pure joy possible through his Maker.  

I do hope that you follow us on this journey!!  I will end this post the same way I began - reminding you just how GRATEFUL we are for your love!!  

The Tight-Rope of Parenting a Special Needs Child

A few weeks ago we had a meeting with Levi's service coordinator with the Dept. of Developmental Disabilities which was full of dozens of questions that we can now answer in our sleep.  But this time she came across a question that turned the meeting from a mundane hour of anticipated monotony into a renewed reality of pain that always surprises the depths of my fractured heart.  The question on her paper read, "What does the client want for his/her future?".

After we re-worded it and he finally understood the concept, he answered with a grin.

"I just want to walk.  Maybe for tennnnn minutes (as he held up his two hands indicating 5 minutes on each hand, that steadfast grin surely in place).  Maybe we can do it tonight".  He casually returned to his iPad game and his sweet coordinator and I looked at each other with heartbroken tears streaming down our cheeks.

How do you kneel down so you can make eye contact with the sweetest 5-year old boy and validate such a simple dream yet lovingly tell him that may not be what God has for his life?

I've gone through my fair share of "It's not fair" bouts with God, but to have to impart in faith His absolute goodness and promise of perfect plans to my sweet boy felt like it was too much for me.

Probably because in my own heart I don't trust God in that area of life.  Finances, yep He'll bring the work.  Community, He's working on it.  His presence in tough times, getting dicey.  His goodness when it's unfair, the walls go up.

I'd let my heart resemble Levi's legs.  Rigid, tight, and unwilling to bend without a lot of force.

Being a strong advocate for a special needs child while still trusting fully in God's plans is a very tight rope to walk as a parent.  I've repeatedly erred on the side of fight harder, hold on tighter, push, push, push.  I know there's value in these characteristics, but when it's not held in one hand with the other hand cradling God's promise of sufficiency and peace no matter what the outcome may be, it creates an anxious and control-seeking heart. 

The morning of our appointment with the podiatrist a few days later represented a big shift for me.  The die hard advocate gave way (finally) to the most trustworthy Advocate of all.  The rigidity of the tissues within my heart loosened fully for the first time since hearing "Cerebral Palsy".  My tightly closed fists opened to Levi's Father as my cheeks were saturated in tears of freedom instead of frustration.  NOTHING can take away the bright future that is ahead of Levi.  Not a wheelchair or a life of physical pain or limitations.  The spirit that God placed within that child will prosper and shine no matter what, and maybe even more so because of his physical handicap.  He will soar, he will triumph.  Because he is God's creation, perfect and complete, just as he is. 

A few hours later I could only credit my patient and gracious God as we heard the doctor proclaim with conviction that our year-long quest for casting was the right thing to do, and that he'd cast his own child without hesitation.  He not only believed that Levi had a great shot of success with serial casting but understood our fight with the insurance companies was nothing short of disastrous.  He then went on to share how often physician's lose sight of why they began practicing medicine to begin with - to help people.  He said he knew that the right thing to do in this situation was to treat Levi with or without the authorization from the insurance company, and he was happy to provide all of Levi's short and long term care at no cost.

We are walking out the door in 5 minutes to go see God's plan unveiled for Levi in this next stage of life.  Who knows what the casting results will hold, except for the One who's plans are perfect.  I praise you Papa, for working your perfect will in Levi's precious life, and for your grace and patience with me as I learn to trust in your promises.
 

For an Hour in Time

The playing field was level, no handicap taken into account, the score started zero-zero,
for an hour in time. 

He felt the wind on his face and the pedal under his foot, he had nothing warring against him,
for an hour in time.

He could go the same speed, he had the same fighting chance, nothing was holding him back, 
for an hour in time.

It's his differences that set him apart
His special soul that changes our lives
But once in awhile it's nice 
To be the same as all the others
Even if it's just for an hour in time.  






    

New Life

Lately I’ve been praying for new life.  As I kept praying all I could see were branches that were so damaged by the storms that they were surely dead.  Dry and brittle, worn and ragged.  But I knew that beneath the soil, deep down where no one could see, that there was life, and He was that life.  Rooted and anchored in the Son my weary branches would give way to new life again.  Spring would come, brown would give way to green again, and the barren branches would be a season in the past.  Let it come God, let it come.  I’m ready.  I’m so ready. 

And He answered me.

He surely answered me. 

Ya know the kind of story that comes along once in a while that is so good it’s almost hard to believe?  That as you hear more of it you keep saying, “You have GOT to be kidding me!”. The kind of story that seems to be just a little too good to be true.

The God kind.  I love those stories!! 

Well I’ve got one., and it’s GOOD!    

We are relocating indefinitely to the mountains.  Where it’s green.  And anything but barren.  A place that screams of life.  A place that’s slow, a sanctuary of rest.  A place with more family.  A place full of answers to our prayers.

A place where my kids will grow up with their grandparents and aunts/uncle around every single day, not just on holidays.   Somewhere that’s full of hands eager to love our family and lift our hands, a place where mama can breathe more and daddy can slow down. 

A place where our sweet boy can get ALL of the treatment that he needs with caretakers who listen to us and believe the same as we do, that botox is not the answer and serial casting is the ideal course of treatment for kiddos like Levi.  A place where our concerns are met with understanding and solutions instead of confusion and disappointment.  A place filled with people who are willing to design a custom plan just for our boy, who are invested in his well-being without even knowing what a gem of a soul he is.  Caretakers who care.   

A place where he can receive all of his weekly therapies instead of being just another name on a waiting list.  A place where he has the best shot at thriving, whatever the outcome may be.  A place of abundance.

A place where we can be a family, to connect, to start fresh.  A place to plant some seeds and watch them grow. 

A place where my soul will find new life. 

Time Out

I hit a pretty big low a few weeks ago after a consult with the neurosurgeon at the children’s hospital.  After he left the room and we were loading our little pod into strollers and carriers I asked Mike to head to the car without me.  I sat in the cold sterile room and just cried.  And cried.  My body was finally doing what my hopefully heart and optimistic mind wouldn’t do. It broke down.  Because it was time.  And there wasn’t a bright side to this meeting. 

As I walked to the car and we rode home in silence the phrases of our consult kept replaying in my head. 

Quarterly Botox injections is the only treatment available // Not FDA approved so we use an off-label // We’ve taken this poison and harnessed it for good! (with excited smile) // He won’t ever walk without it // Rarely any side effects, but if he has any sign of respiratory distress go to the ER immediately // Families line up for this like clockwork every three months (insurance won’t approve it any sooner), they just love the function it allows their children to have // When it wears off around 8-12 weeks the muscles return to the previous state // In 15 years of injecting Botox for muscle relaxation I’ve never seen a child maintain the stretch they had after the neurotoxin wears off // When his muscles build up a tolerance we will play with the numbers and up the dose // We need to reintroduce oral muscle relaxers to control his tight tone // When he’s old enough we can insert a pump in his tummy to disperse muscle relaxers into his spine // Around age 7 he will be a great candidate for neurosurgery //  There is no approach outside of chemically interrupting his neurological patterns with pharmaceuticals  //

This is the answer.  Anesthesia and controlled poison injected into his legs.  Over and over again.  With no long-term benefit.  And without all of this he won’t walk. 

Talk about immediate guilt and shame when we don’t sign the dotted line with eagerness. 

Talk about feeling trapped.

Talk about an emotional roller coaster month in and month out as we wait for the toxin to bring comfort and mobility but dread the week it goes away.  And the pain and confusion for a little boy’s heart as he can’t understand why he can walk sometimes and other times cannot.  And despite short seasons of progress he really isn’t getting any better. 

And the more we ask questions and delay committing to this treatment plan the higher the tension gets between them and us. 

I think being Levi’s advocate took some getting used to.  I’m a people pleaser you see, and being an advocate means to plead on someone else’s behalf.  And sometimes that ruffles feathers.  Or it takes the damn feathers off completely!  And that is okay, that is what I’m called to, and I trust in a God who will give me wisdom to know His plan for Levi and who has wired me with instincts that I need to trust. 

So as my sweet boy’s advocate I call a time-out.  We are heavily pursuing the serial casting approach as an alternative treatment plan and God has opened a potential door.  We will know more soon and will keep you posted.  We covet your prayers, this road is hard and confusing at times.  Thank you to all who read. 

Mike and Kelli