The Beginning of the End

As I sit down to type this and reflect on the past few years of our IVIG journey, I can't help but get tears in my eyes.

Five years ago, we questioned our path.  We were given the opportunity to start medical intervention after a documented and proven Immune Mediated Disease was identified.  Were we making the right decision?  Did we want to take a chance at recovery, even with serious possible medical side effects?  

After doing a trial of a high dose steroid, we were able to sing "Happy Birthday" to Hunter for the first time in three years.  He used to scream, rage, and run anytime the song began. I can't remember how many birthday parties I sat outside, holding Hunter tight, as we would hear the chorus inside the house.  But that year, with five candles shining bright on his cake, we watched our child smile, clap, and enjoy the spotlight.  

We were all in.

And here we are, 23 IVIG infusions later, 92 days in the hospital, in remission.  We met with our Neuroimmunologist yesterday morning, and he told us we were at the end of our medical intervention journey.  We have overtaken his immune system.  He will always have Autoimmune Disease, but the encephalitis that had consumed his body since age 2 is under control. 

From the child who used to rage every hour, tear his clothes off, scream, hit, throw objects, destroy property, and rarely ever smile- we have come full circle.  

I discussed my worries with Dr. G about a possible regression, after doing IVIG through 4 phases over the past 5 years.  He explained that like a cancer patient in remission, we wouldn't continue dosing Chemotherapy in the chance that the cancer would return.

Do we still have issues?  Of course.  Is he still quirky?  Yes.  Does he have social skill limitations that impede his relationships with peers?  Sadly, completely accurate. 

But we have a child who is functioning on grade level, with minimal assistance, and is happy.

According to Dr. G, we have "put the fire out."

I remember when Peyton was first born, and we had sold our house, had moved into a temporary apartment on the second floor, and were attempting to find a new home.  I pulled into the complex, after a meltdown in the grocery store for not purchasing an item Hunter had wanted.  I had already felt defeated, and as I got Peyton's baby carrier out, unbuckled Hunter's carseat, and had Paige jump out of the car, Hunter ran from me into the parking lot and almost was hit by an oncoming car.  As I grabbed his hand and pulled him to safety,  he refused to climb the steps. I remember sitting on the stairs, baby carrier on the ground, weeping for mercy, as he raged and screamed in refusal.

Please, God, please hear my prayers. 

I CANNOT do this.  

I cannot care for an infant, try and support a young girl terrified of her younger brother, and recover a child with Autism and a brain on fire.  

I'm not sure why that memory sticks with me so strongly, or why I still get tears in my eyes thinking about that moment. The only other time I remember crying that hard was when my grandmother passed- 

and the day I received his Autism diagnosis.  

He was at a babysitter's house for Peter and I to meet with the diagnostic team, and before I went to pick him up, I went home, sat on the kitchen floor, and pounded the cabinets with my fists in anger. Tears ran down my face and I truly wept. 

WHY? 

Why would God take away my so-called normal life?  Why were we being punished??

And now today, as I sit here, typing "the end," I realize that those words are furthest from the truth.

This is just the beginning.  

Now that we have a child more open to learning, with less anxiety and anger, who can predict the extent of his recovery?  

I look back on so many of these blog entries and think how painful some days were- having strangers give me the evil eye for my screaming child, tell me how I was a disservice to my child, accusing me of being an unfit parent--

and the memories still hurt like a fresh wound.  

All around our house are reminders of our old life.  Dents in the floor from throwing objects.  A hole in his door from a moment of rage.  Pictures that never hang straight due to the slamming of doors.  

However, now that we have been given an "all clear," I know that the next two years before puberty and middle school are the most important years yet.  It's time to focus on getting his frontal lobe control to return, and function without the overwhelming OCD and anxiety that still play a role in his life. We have to carefully and perceptively raise a child who has awareness of those making fun of him, those who purposefully exclude those with differences, and a child who wants to love like no other-

So we will be preaching the "Choose Kind" train.  

If I could bottle the last five years of IVIG into one statement, GRACE WINS would be sung loud and proud.  We have had immense support from friends and family who just get it- who can sense a hard day, call to offer to take our other children for playdates, and respect our efforts in a way that reinforces every sleepless night as a win.  

We had insurance and HR reps give us the chance of a lifetime, granting approval for his first IVIG, which designated the proven need to continue the intervention that saved our son.  We had so many praying for us those first few months, and I never felt prayer like I did that first week in the hospital. 

So many doubts, fears, and unspoken questions consumed our minds, but at some point, we had to let go and trust.  

Along this journey, the rain has pounded and been relentless- but each time it seemed as if the storm would never stop, we were granted a beautiful rainbow in the sky.  And the last time we saw a rainbow a few weeks ago, it was a double rainbow- a perfect sign of God's grace flowing steadily for our family.

This story is not over.  Every day will bring new challenges, but each day provides a teachable moment for Hunter and for all those he touches.  

Our journey has been different, but we weren't lost.  

We just decided to take an alternate route.

XOXO