Jesus be Near, because I Just Don't Know . . .

Hi, my name is Ryan Elizabeth McLaughlin and I have three special needs children, one of which now lives in Heaven.  It. Is. A. Roller-coaster of the most intense caliber.  

Henry has been out of school for a while now.  Thankfully, he is able to do this because of plans we have in place with the school.  He and I are having lots of adventures, and most of the time, Lucy gets to join in too.  He is reading so well and quite fluently, and I have the opportunity to teach Henry to pray, grocery shop, clean and do many other things that are important in life.

 Some photos of us learning about wild animals!  

Henry loves animals and is so good with them.

Of course I had to show these precious Lucy pictures of pure delight! 

My "strong-willed child" is more than just strong-willed, People.  I think I officially realized this about Henry after Ellie Kate died.  But I thought it would get better - I thought that, if his heart healed from the death of his sister, then he would get better and life would get better.  But Henry's pain is so much more than that.  For the first half of his life, Henry experienced a lot of instability, even though we tried our best to keep life stable and safe. Mike and I were mostly at the hospital with Ellie Kate.  We of course would take turns and our parents would take turns, but that still means that Henry didn't have the stability of having both of his parents at the same time, as most children do.  He and Conner learned to have home-health nurses in our home, especially during the evening (when we needed it the most), when a family usually spends quality time together.  We weren't surprised with the behavioral diagnoses, but we were surprised with PANDAS.  PANDAS is more definitive, affecting the brain, the body and everything in between.

Conner has lived a very similar life as Henry, but he had Mike and I at home, stable with him for those first two years.  It's amazing that two children can have so much of the same up-bringing and yet have such different outcomes.  I know personality has a lot to do with it, and timing, and a million other things.  It's still hard to understand why Henry has been affected so deeply in every way imaginable.  I can't imagine how Henry and Conner filter through the aspects of even our daily lives with NKH, PANDAS and IC and all that comes along with each of those things.  God knows, and I have to choose to believe that.  I have to choose to trust.  

We had hoped that tinkering with the meds would have brought more peace to Henry's life, but at this point, they have not.  At least not for an extended period of time.  Is he in a continual PANDAS flare?  Is his condition made worse by the emotional things he has/is facing?  I don't know.  We don't know.  The doctors we have seen and have spoken with do not know.  I just don't know what to do, ya'll.

Henry needs to start home-bound services with the school this week.  So far, we haven't been able to get him to complete much of the schoolwork that has been sent home while he has been out.  I'm SO incredibly nervous about home-bound services and how Henry will treat the teacher.  I'm nervous about how he will handle the work.  Will he do it without a fight?  

Also, Henry is having an EEG done this Friday.  We've done so many EEG's with Lucy and with EK.  I have never had an EEG with one of my children who can walk and talk. I have no idea how Henry will react to all of the wires being stuck to his head, but I do know that the test needs to be done.  Over the last several months, we've been seeing some serious and scary things with Henry - almost seizure-like.  When you get down to it, I'm nervous about the results.  I've had so much bad news when it comes to my children and their little brains.  I don't know how Mike and I will react if the EEG shows seizure activity, or abnormal activity.

I don't know how to parent this.  I don't know how to navigate. I'm not even sure how to advocate for Henry because I honestly don't know everything that he needs.  I also don't know how we will pay for all of this as Henry does not have the supplemental insurance through the state that Lucy does (which doesn't pay for everything, but does pay for a good chunk of her needs).  That's a taste of what I don't know.  

I DO know that God is Jehovah Jireh and that He will provide all of our needs.  I DO know that this is a need, so He will take care of it, even in miraculous ways, and we are praying that Henry will see God provide and, for the rest of his life, that He will remember seeing God move on his behalf.  I DO know that Henry was promised to us and I WILL cling to the promises we received concerning Henry from the book of Isaiah.  I DO know that God knows exactly what is going on in Henry's little body and in his little mind.  I DO know that Mike and I will continue to cling to each other and that we will continue to love ALL of our children unconditionally; even if we don't know how to parent well, we will love and serve and teach them to the best of our ability.  That's what I DO know.  

Jesus, be near.  Help us to love all of our children well, pointing them to you.  May all of them feel safe and secure in our home and outside of it.  Guide us to the right doctors and facilities.  Navigate, because we cannot.  Help us to love our children recklessly, even when it is hard, because that is exactly what you do for us.  

-- Ryan