"That's not his story."

Hello again, world. It's been a hot minute...(clears throat) or a couple of years...since I've swung open the doors of our existence to share a word - or 3,000 - about life.

Sometimes when you feel like you're not kicking butt and taking names, you don't really want to type out that the struggle bus has parked in your driveway. Like parked.

But then you learn how to load up three young kids on the struggle bus multiple times a day, adjust where you are going and you realize that everyone pulling up next to you has endured their own bumps and re-calculations in their rides, too.

So here we are now.

2020. The year of the pandemic. The great pause. That time it felt like the world stopped spinning for a bit and all you had was your family and faith.

And somehow...that has been enough.

This year has been rough. It's been raw and brutal and beautiful, all at once. And boy have we had time to reflect.

But to get to the crux of this post, I need to backtrack a bit.

This post is about James, our son who turns five today. Our son who has the best smile on the planet. Our son who adores his sisters. Our son who doesn't care that our skin color doesn't match his. Our son who joined our family through a foster-to-adopt placement. Our son who has been and is continuing to prove that he is an overcomer.

This is about him and a message that I feel so convicted to share that if I continue to keep it within me, I know I'm being disobedient to God.

"That Kind of Special Needs..."

Let me let you in on a little secret when you become certified to become a foster parent/foster-to-adopt: there's a "Special Needs Placement" question that you will be required to answer.

I can't remember the exact wording, but it was something like, "Would you be willing to accept the placement of a child with special needs?"

It's straight-forward and can make you feel pretty selfish when responding.

I can remember our home development worker with the Louisiana Department of Children and Family Services asking me and Matt that question in our certification back in 2014. We had already talked about the profile of a hypothetical child in our future and to be brutally honest, special needs did not fit into that profile. We were expecting our first biological child and the thought of having a child with special medical needs seemed overwhelming.

We explained to our social worker that "we just don't feel like that's our calling" and we couldn't think more highly of the special people willing to intentionally check the special needs box.

She then clarified that special needs also included the "hard-to-place" kids. This included children of any race over the age of five and non-white children over the age of two. That realization took a minute to grasp.

"So an African-American toddler is considered 'special needs' even if there's no medical issue?" I asked.

"That's correct," she responded.

I couldn't believe this label was so defined and used on forms. Matt and I already knew from the certification classes and foster care statistics that African-American children, particularly boys, were less likely to get adopted compared to their white peers, so our hearts were already open to a placement reflecting that need.

"Well, we can do that kind of special needs," Matt and I responded. Box checked, but with the parameters we naively tried to control.

The Beginning with James

Fast forward nearly two years from that day and we were the parents of a one-year-old, had just found out the surprising news we were expecting our second child, and we were on our way to meet our potential son in the foster home he had been in since birth. (Read the blog post related to that experience HERE)

Our first family picture the day we met James.
 Lila, 13 months; James, 10 months; Adeline, 6 weeks in my tummy (March 2016)

When we found out about the baby named JT, he was simply JT.

The first picture we ever saw of James. (November 2015)

He had not been labeled "special needs" by the state (yet). We knew he had some health issues because of his birth mom's drug use while pregnant, but everything had been manageable up to this point.

He had acid reflux, asthma, and positional plagiocephaly (flattened skull), which he was wearing a helmet to help correct. None of these conditions had warranted a special needs classification and his age was still too young to move him to this label based on the age/race criteria.

We connected with this precious, tiny boy and knew God was moving us to adopting him.

JT was moved to our home two weeks before his first birthday and we proudly gave him the name James, after the book of James in the Bible. James would legally be our foster son for a mandatory six-month period before his adoption could be finalized.

Lila's warm welcome to James the day he was brought to our home forever. (May 2016)

The first month was a blur. There were daily nebulizer treatments for his respiratory issues, prepping special bottles of formula for acid reflux, and then the emotional transitions of going from a family of three to four (and being quite pregnant) and for a child who's only known one home to be uprooted from that and put into a home of strangers.

We knew this time would be challenging.

We expected it and we expected it would gradually end after the initial changes.

Still, there are great memories.

James turns ONE! Two weeks after joining our family. (May 2016)

And there are ones that I'm sharing outside of our circle of family/friends and medical specialists for the first time, because I wish I could have read what I'm writing when we were in the pit of despair, emotionally and physically tapped out - and clinging to the hope that it would get better. Guess what? It does! But first...

Failure to Thrive

When we began introducing food to James, things went downhill very quickly.

Involuntary muscle contractions when eating. (June 2016)

What started as twitching and muscle stiffening reactions when eating turned into what looked like mini seizures. Vomit almost always followed. And lots of it.

At the worst, James would see me or Matt simply open the utensil drawer and he would projectile vomit. He would throw up 10-20 times a day.

The darkest day for me was on our kitchen floor with James resting his head against my eight-month pregnant belly as I fed him high-calorie Pediasure through a medicine dropper. It took close to an hour to get four ounces of the liquid in him and I had him propped up to help it go down as easily as possible. When I went to stand up after the feeding, James threw it all up. He was soaked. I was soaked - in vomit and tears.

James was tiny when he came to us, but all of the vomiting had led to even more weight loss. We began seeing a nutrition counselor as James fell deeper and deeper into the "failure to thrive" category.

We knew a feeding tube was next if something didn't change...and fast.

Nothing seemed to be working and every call for help landed us on long waiting lists to see a specialist. It is extremely defeating to hear responses like, "We are no longer accepting new patients," after being on hold for way too long.

Or "It sounds like he could benefit from therapy at our clinic. Would you like to get on our waiting list? He would be in position 30..." as in 29 kids before him.

Average length of time to just get seen for an initial consultation: at least six months.

James couldn't wait that long.

Actual hold time with Medicaid representative: over an hour, then the call disconnected in the transfer. 

With the help of our pediatrician, who recognized this as an emergent situation, James was finally able to start getting pushed up the emergency list to see specialists.

Oh, The Specialists You'll See

Over the next several months (that would turn into years), we wore out I-10 from Lake Charles to Lafayette, Baton Rouge, and repeated visits to Children's Hospital in New Orleans. We saw a pediatric gastroenterologist, pulmonologist, otolaryngologist (ENT), neurologist, geneticist, neurosurgeon, cardiologist, urologist, numerous occupational therapists, physical therapists, and speech language pathologists.

We did barium swallow studies.

Swallow study checking how James's throat/esophagus handles liquid and food. 

James had an MRI and CT scan checking for abnormal brain activity after concerns of the seizure-like episodes and an endoscopic procedure checking for any blockages in his GI tract.

At Children's Hospital after the endoscopic procedure.

Our first glimmer of an answer as to what the heck was going on came from the endoscopic procedure when he was diagnosed with eosinophilic esophagitis, a chronic inflammatory disease of the esophagus.

Checking James's heart rhythms with Dr. Rubee Gugol and "nurse" Lila Rose.

The next light bulb moment came through Early Steps evaluations where it was determined James had sensory processing disorder. This made sense with so many of the texture issues James struggled with while eating, his reaction to basic daily routines like getting dressed and brushing teeth, and why he would sometimes bang his head while sleeping or rock back and forth while sitting.

Short-Term Special Needs

Answers were coming, James was starting to get specific interventions and small improvements were keeping us from losing our minds.

He was in a daycare for children with medical needs, which allowed me and Matt to continue working. He was doing an intense feeding therapy program, occupational therapy, and all signs pointed to these needs being temporary.

We were encouraged through evaluations and follow-ups that involved conversations about James eventually growing out of these challenges or learning to manage them in a way that his life would not be impacted by them.

Feeding therapy session at PediaTrust. (Fall 2016)

By the time James's adoption date rolled around, he was doing much better. Still, his case manager pushed for his adoption to fall under the "special needs" umbrella based off of the health challenges of the previous six months. A special needs classification would mean we had access to more resources/services to help James thrive. We wanted that.

Making James an official member of the family. (December 2017)

We accepted short-term special needs. We couldn't let our minds go to the possibility of all of this continuing long-term.

James would be okay.

We would be okay.

This would be a chapter we could close one day.

Graduating from medical daycare at PediaTrust. (August 2017)

Switching Gears

James moved from medical daycare to our church's Mother's Day Out program, but it quickly became evident that he was not ready - physically, emotionally or cognitively - for this type of care setting.

He started a full-time ABA (Applied Behavior Analysis) program - then mastered it in six months. We were thrilled!

James was able to start Pre-K 3 with his sister.

First day of Pre-K 3 for Lila Rose and James. (August 2018)

And then, the sweet boy we know at home who derived so much joy from our praise and affection began to drift.

At home he was still the same James, but at school - it was as if another child would take over his body. There was screaming, aggression, running away, destruction - you name it. Matt and I truly did not believe it until we hid at the front door to his classroom and watched it ourselves. 

We began alternating going to his school every day to help out at the most problematic transitional times. Then, after months of begging our insurance company, he was able to get approval for an ABA therapist to shadow him at school each day.

Things would improve, then they would fall apart. It was an exhausting see-saw of ups and downs, filled with questions that turned from the short-term to the great unknown.

An Unexpected Diagnosis

In a desperate push for more help, James finally got an appointment with a developmental pediatrician. After hours of watching him play, interact and answering what felt like 1,000 questions, the specialist left me and James alone in the patient room. 

When she returned nearly an hour later, we had a diagnosis: Autism Spectrum Disorder. 

The doctor could have told me I was pregnant with twins that day and I would have been less surprised.

It was a massive punch in the gut. A big label to add to the other labels I felt this young child was unfairly carrying - and we didn't want to accept it.

I tried to hide my tears from James as I sat in the patient room chair. The doctor assured me that this diagnosis would be the best thing to connect James with more services that insurance would otherwise deny. 

She was right, but that didn't stop the wave of grief that washed over me in an instant. Grief over the reality that this would not be a short-term thing. Grief over the thousands of hours your child has spent in therapy, while other kids play. Grief over what his future might look like.

But, if you're a special needs parent or have a loved one who has faced health obstacles - you learn to push that grief to a part of your heart that can't emerge often, because there's work to do. And you do it.

"That's Not His Story."

For James, that work has meant 30+ hours a week of continued therapies over the past year to help make day-to-day life easier and prepare him for mainstream kindergarten.

It's a lot of work for him and our entire family. The challenging days are challenging for all of us.

There was a particularly rough patch a few months back where day after day, there were problematic behaviors in his school setting that just seemed to compound with no end in sight. We felt defeated and drained.

After I unloaded all three kids from my car at home, I retreated to the bathroom to cry - and cry out to God again.

As the tears poured from my eyes, I pleaded with God to change this situation. Take away these challenges James faces. Make it easier for him. Change him.

Then, God spoke these words to me as clearly as I've ever heard his voice, "That's not his story."

That's not his story.

We can try to change the narrative to fit what we think it should be, but guess what...God is the author, editor and publisher. God is sovereign. We are not.

Talk about freedom to let God do His thing.

All of these years of pushing James to fit into what society sees as a "typical" kid mold, but that's not what God wanted or wants for this masterpiece made in His image.

James is still the hardest working kid I know. There are struggles to overcome, but each victory is that much sweeter, because we know it's all part of a richer, deeper story than what we could have written.

One of the famous miracles of Jesus is when he heals a man born blind. I often read this passage in the book of John, because it makes me think of James and how God is already using him.

As he went along, he saw a man blind from birth. His disciples asked him, "Teacher, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:1-3

Y'all watch this kid now and in the coming years and I know you'll also be watching God at work.

"You, Lord are our Father. We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8

-Britney