Peace Like an Ocean

"At times I wake with a fright
only to realize it wasn't night

I hadn't been sleeping this nightmare is real
I can't even guess how my child must feel

He rants and raves screams and rages
Animals like this would be kept in cages

He cries out loud, sure that nobody loves him
His only solace is scripture about the God above him

Some days he wants hugs some days he can't be touched
He falls apart if he feels he is rushed

He hits and kicks and hurts those around him
With an age inappropriate temper tantrum

He misunderstands the tone of my voice
Assuming I am always mad at him as if there's no other choice

Underneath he's sweet and kind and has a great disposition
Curing his PANDAS has become my one mission!

I want my son back I want him to feel loved
I resent this path in life that my family was shoved

I hold my breath every time we’re around a sick child
I pray his rages and flares this time will be mild

Others don't see him the way that I do
They judge him and ridicule my parenting too

One by one doctors doors slammed in my face
As they realized a cure wasn’t something they were willing to chase

Some flat out don't believe in this disease we are living
They refuse to dispense the steroids, ivig and antibiotics we are giving

Insurance won't pay and so children suffer on
aware of the life that they had that is gone

On this roller coaster I'm going for a ride
I pray to find smiles and laughter on the other side

As the days and nights blend into one
I search for the key to cure PANDAS for my son

Prayers to all that are fighting this fight
The least we ask for is a little rest tonight"

- Suzy Dunnuck Bower, PANDAS mother and advocate

PANDAS is a very new thing for us, as most of you know.  I feel like the Lord clearly led us to this diagnosis but at the same time, it's been a bit hard to accept.  Maybe it's just hard to wrap my mind around this disorder.  Reading posts from other PANDAS parents is comforting, but it also shows me how serious this is and how much it affects everyone in the family, in the community, etc.  These sweet families devote their lives to their children and their care, searching for the best doctors and best treatments; looking for the best hospitals and options out there.  It's new and isn't studied much, so most treatment is experimental and not covered by insurance.  Does any of this sound familiar to you?  For me it does because we already live this very thing out with NKH! We've done so for nine years and there is STILL so much that we don't know.  We STILL grow weary of the NKH fight, and yet we now have another serious one on our hands.  It isn't terminal (thank you, Jesus), but it is detrimental to little Henry in ways that I can't even explain; ways that hurt him physically, mentally, emotionally, and spiritually.  

These photos are from our Destin Trip last December; it's my favorite place and brings me much peace, as it does the boys.  I wish we were there, but I longingly look back at these photos of Henry and the chaos that is going on in his heart, partnered with the beauty and peace of the ocean.  Two of my most favorite thing in one place.  Lord, thank you for this literal picture of Henry in peace!  Bring us YOUR PEACE that passes all understanding.  Only your peace will do!

This child, my Promised Child, My Henry, facing this awful thing - how do I parent it?  How do we face it together as a couple?  How to we help Conner handle it as it adds so much stress to his life?  And Lucy?  PANDAS comes in and takes over and these outbursts Henry has are uncontrollable.  I don't want to go into too much detail because of his privacy, but really and truly, people get physically hurt when the outbursts occur.  And his tantrums are like those of a toddler.  Henry doesn't deal with tics, as many PANDAS children do, but he does deal with OCD.  Henry's OCD is in the form of his thought-life; he will have something come into his mind (usually a want) and he just can't get it out of his mind.  He can't put it off like you and I, or redirect his thoughts.  He dwells on this want and works himself up over the fact that he can't have what he wants when he wants it (candy, play-dates, TV shows, toys, games, etc).  Sometimes he loses his bodily functions, although thankfully he isn't bothered at all by this or doesn't seem to understand that this isn't age-appropriate (for this I am SO grateful).  It so much more than "just" ADHD or a spoiled child.  I sometimes feel like people see Henry act out and immediately assume one of those two things, but that isn't the case.  This has also opened my mind to a new group of special-needs individuals and their families who are also often discriminated against.  

So many of you have kindly given me suggestions on how to help Henry, and Mike and I really do appreciate everyone's concern and eagerness to help. But here's the thing - I honestly just need to vent most of the time when I write or post about these things.  You can rest-assured that we are doing everything we can to help Henry with this - from doctors, to counselors, to therapists, to drugs, to oils, to prayer, to treatments, to out-of-state options (the leading PANDAS doctor/hospital is at Boston Children's Hospital).  We just need prayer and continued encouragement, which you all are so very good at doing!  

Thank you for lifting us up.  Thank you for praying for Lucy as she's faced intense ear infections this week that have had her very sick (please pray that she will be able to tolerate her feeds better asap). Thank you for praying over Henry.  God has laid it on my heart to pray for Jesus to tame Henry's heart.  I would love for you to pray the same!  And for Conner and his tender heart - that he wouldn't feel forgotten or left out in the chaos, but that he would feel treasured.  My prayer for him is that God would capture Conner's heart and show him what a treasure he is!   

Thank you for continuing to remember Ellie Kate during "In Honor of Ellie Kate - A Month of Reckless Love".  Please keep loving people recklessly and keep us posted by sharing on our Facebook page.  We do so love hearing about how you are loving and giving to the lives around you, especially with Ellie Kate in mind!  

Wearily Yours,

Ryan