Sickness

Isn't it too early in the fall season for people to be sick?  Seriously though - we've had two rounds of illness in our family (and extended family), and I'm already DONE.  Put a fork in me, ya'll. Last night, between coughing up a lung and me asking him not to move so I wouldn't vomit, Mike declared that we are OVER and DONE with sickness for the entire fall/winter season.  Is that possible?  Lord, let it be!


Last week it was sinus infections and bronchitis, although thankfully it was the adults that had the brunt of it all.  This week it's been the tummy bug, and not just ANY tummy bug . . . this is the tummy bug from heck, causing projectile vomiting from BOTH of my boys (and for the adults, who thankfully have better aim).  I am literally praying, and asking for prayer, that the boys will finally learn to aim, or even make it to the bathroom, folks.  Honestly, I am super thankful that Mike and I were able to clean up after the boys.  Unfortunately, the bug has passed from my mom, to Henry, to Conner, to Poppie (my Dad), to A-Ray (my sister Rachael), and to me.


Our home is absolutely, completely disinfected as of now, as I've been truly obsessive about it.  We just can't let Lucy get the bug or she will be in the hospital for sure.  She's been able to stay out of the house and be well-cared-for at the same time, and I am so grateful that God has provided that for her. I thought that Lucy was the only one who was drastically affected by any "small" illness, but I'm learning that thought is very wrong.  This bug has knocked Henry off his feet, and even though he hasn't vomited since Tuesday, he is pale and has slept all day the last two days (still sleeping now).  It isn't seizure activity, because I keep waking him up and making him talk to me.  It's just sickness and his body being worn out from it.  And you know what?  I've been the same way and as I look back, I've had a hard time get back to my baseline after illness for several years.


I have no doubt that Ellie's death has played a role in my own autoimmune system, and that it's had a hand in my severe endometriosis, intercystial cystitis, IBS, etc.  I can't bounce back quickly anymore.  It says around for days and I cannot get the things done that I need to get done.  For example, I've been trying for a couple of weeks to get my Rodan and Fields business off the ground, and I STILL haven't been able to accomplish the simplest of tasks.  Not just because of my health, but because of Henry's health and behavior, as well as other things that pop up when you are a mommy.  I know that ya'll get it.  It's hard being an adult and trying to accomplish your hopes and expectations while taking care of the precious gifts God has given you.  


My heart, my thoughts, my energy . . . are ON, and WITH and FOR Henry.  He's had to miss so much school already.  He's covered by his IEP, but I still hate that he has to miss being in a classroom, being part of routine and being around other children.  I feel like I'm dragging a giant sled, stacked with heavy flagstone, making my way through heavy snow and then all of a sudden, hitting quick-sand that causes me AND the sleigh and cargo to sink.  Then I have to pull it out and start my treck all over again.


We hate to see our children sick, am I right?  And to not know all of the answers to their illnesses?  That's maddening.  Truthfully, I thought this part, this "medically unknown", was completed for us in the girls.  We've learned to deal with NKH and the strange ups and downs that come with it, sometimes unexpectedly.  We are comfortable with it in every way.  We aren't satisfied and we will ALWAYS push for a cure and for better treatment however, I feel safe now with NKH because we've lived with it for almost ten years now.


But Henry's physical, emotional and mental health is a mystery to ALL of us, and I mean ALL of us.  We met with Lucy's geneticist last week, who was incredibly happy with Lucy's progression, but was so sad and confused to hear about Henry's PANDAS, seizures and other health issues.  We talked about it for quite a while, throwing different thoughts back and forth.  Bottom line, when it comes to Henry, we are still trying to get over the, "What in the world is going on?!".


Henry knows that something is different.  He knows that something is going on inside of him.  He's seen recent Special Olympic commercials and has asked to take part in it all, since he sees himself as "sick" because of PANDAS.  We treat Henry the same as Conner, and yet he's been asking me when he can choose HIS Make-a-Wish trip - it just makes sense to him that he would get to go since his sisters have rare diseases and seizures and have been able to go.  It's heart-wrenching and confusing to hear your beautiful, able-bodied, sarcastically savvy, little man say things like this.  Is he right?  Or will things turn around and be okay?  I don't know, and most of the time I don't even know how to pray for Henry.  I'm just learning to give him up to the Father.


We have some future things we are working on for Henry's treatment, including trying to get to an infectious disease doctor in St. Louis.  Would you pray that our referrals will go through and that they will do so quickly?  Will you pray too that we will get into the doctors here at OU that we need to see, and that the Lord would go ahead of us and give us favor with them?  We need answers so that Henry's life can get better.


I apologize for not leaving you with encouragement from the Word today.  I'm just struggling to put one foot in front of the other, to be honest.  Nevertheless, I appreciate you staying along for the ride and for continuing to encourage us along the way, even when we head into those dark, roller-coaster tunnels of the unknown.

Ryan