New Diagnosis, New Treatment and What Will Really Stick

So, we have this incredibly insurmountable week before us. At least, it seems insurmountable to me. You see, we have a little boy who, to say the least, is incredibly medically complicated. His diagnoses have left him famous, but for not the reasons that most parents want their kiddo famous for. Most parents may admit to wanting their child to gain some sort of notoriety. Doesn’t that explain the rise of tv shows in which kids are highlighted for their rare talents? I mean, someone has to drive and apply for that child to be on TV. Maybe it isn’t that type of fame you are seeking for your kid. Maybe you want them to be the best dressed at school. Or maybe even you have nobler aspirations, like you take great pride in them being known for their kindness. Hey, I’m not pointing an fingers here. I’m right there with you. I absolutely swell when someone tells me that they love hanging around my kid. Or, that they want to have a playdate with them. But what happens when your child becomes k…

The miracle of today

One after another it just keeps coming. Miracles. Trust me friends that we are not deserving of these. Our faith has been stripped and crazy challenged by this life. We have always said that God would still be good even if things never changed for us, even if these tests came back devastating. But for reasons only He can fathom, He has given us gift after gift during this trip.

Yesterday we had to do another day of getting ready, a cleanse. More liquid. Then we met our GI doctors and we saw God's grace on us again. Our main doctor walked into our room and immediately commented about all the verses that we had put up in our room. With going through several hospitalizations, I knew that the hardest battles in the hospital for me was the war waged in my mind. That was by far the most exhausting! So, I spent time with my mom writing out verses...putting our armor on. I knew we would need reminders in his room. Little did I know that those verses God would use to not only protect my m…

I knew there would be miracles!

What was ahead of us today seemed daunting. We had to get Moses"cleaned out" for his big procedure on Tuesday. He has been on a liquid diet since Friday night so he is starving! Normally, when he gets hungry, he gets really angry. That started out being my first worry and then God started to knock out my worries one by one. He was in a fantastic mood all day!!! Like one of his best days ever! Not frustrated, not hangry, no screaming, no hitting. In fact, it was better than just avoiding difficult behavior. God abundantly blessed us with lots of affection from Moses. Something we don't often get.

Next I was wondering how he would do in this new environment, since newness can cause him high anxiety. Like I said, amazing! His hospital room has two things that has brought him so much peace...a balcony and a bathtub. A warm bath and access to the sun are often super calming! Praise God!! Most hospitals do not have baths. 
Then, of course I was wondering how in the world we co…

Headed to San Diego tomorrow

This week has been a whirlwind of preparation. Making sure we have the right and enough medications. Double checking to-do lists. Laundry. Cleaning. Paying all the bills before we leave. Laundry. Making sure the girls are taken care of. Talking to teachers, therapists, doctors to let them all know we will be gone. Laundry.
Then there is making sure that he is prepared for the procedures that we will undertake this coming week. My son, who has a severe genetic mutation, will be undergoing some pretty crazy tests out of state to see what is going on in his stomach. You see, his genetic mutation is newer. Only two twins in Italy have similar symptoms to his. What does genetic mutation mean? It means that we don’t know the scope of his disabilities. It means that we don’t know which parts of his body could breakdown or at what point. It also means that we can’t put our faith in doctors because they know almost as much as we do. It means that our hope and our strength lie in the One who …

Greater things than these

This past month, I have been changed. It seems as though a shift is happening in this road of autism, living with the pain of disability, learning to love the journey. Just looking at those words makes me a little disgusted because they sound so cheesy, “learning to love the journey”. What? How do you learn to love cleaning up poop?
Anyway, things are changing in my mind. The gospel is coming to bear on my thoughts and I’m starting to see a tiny glimpse, perhaps, of what Jesus told Nathaniel in John 1. See, Jesus is in the midst of gathering his dream team, his posse, his community. He is traveling around saying to guys, “Come and follow me.” Drop everything you have, all you’ve known, all you thought life would be and follow what I say life is. I’m life. Be with me. Obey what I have to say. You’ll find life here.
Scary right? Here he is telling these guys to leave their professions, leave their homes, leave all they know and you’ll see. Right from the get go, he is giving a call t…

My Undoing - When a parent gets hit

I am undone.
What is your undoing? Is there something in your life that has just laid you out bare, stripped you of all you thought you knew? What caused you to become unglued at the seams and your whole world is threatening to fall apart?

I was thinking about this question today as I worked outside. Yep, I was working outside in the heat of an Arizona summer and …dun, dun, dun…I liked it. I like the feeling of sweat. It feels like a cleansing to me. Like all the impurities of my week are leaving my body and I have a chance to just sweat it out. I don’t exercise, other than chasing around my four kids. But, I assume that this is one of the reasons why people enjoy working out. Or maybe, this is the reason that some of my Native American people do the sweat lodge. Or maybe, the Finnish have an answer to life that we, in America, don’t yet understand when every house is equipped with a sauna.
I needed that cleansing today because I started my day with being hit. That was my undoing.…

How mom's can love their kids when it is hard

How mom’s can love their kids
when it is hard

                By Hannah Stone
             Chapter 1  Loving God
When kids get in trouble it can be hard when you have lots of kids to take care of or when you are stressed out. But when you trust in Jesus everything is possible. Trusting in Jesus can be hard sometimes but when you do he will strengthen you to do anything. Jesus can do miracles in your life when not expected at all. Like when you accept Jesus into your heart. When you die you will go to heaven and see Jesus there and everything will be perfect.When your kids are stressing you out or you are having a hard time trust in the Lord and He will give you strength. When you love the Lord He will give you the power to take care of your kids. One year olds,two year olds and I could go on and on. I love the Lord very much and you should to. If you don’t love Jesus I will pray for you and I hope you will ask Jesus into your life. 
You know what would make your life even better? Pray…