Posts

Learning to ride the roller-coaster

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I've never been one for amusement parks. Maybe I was when I was younger or when the idea of being tossed to and fro from a big metal machine was a novelty, but not now. Cue Debbie Downer music. How can you not like amusement parks?! Are you always such a downer? It just doesn't appeal to me as fun. It's probably due to the fact that my body is starting to feel older, more worn. My recovery from things that I used to do in my twenties is not hours anymore. It's more like days. I bet that means I should work out more, take some sort of supplement, heal my gut, rest more, wake up before my kids to run and so goes the list of self-care that I need to figure out how to accomplish so that I can ride a roller-coaster again.

Truth is...I am on a roller-coaster. Come on, you saw that metaphor coming. What do you mean Melissa? Thanks for asking my friend. That metaphor actually started when my little man was born. I was in the hospital for 6 weeks on bed rest before he was born…

Dirty Sheets

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I can’t remember the last time I changed my sheets. Sorry to burst your bubble of sanitation, but it’s true. Many weeks, just getting the family’s clothes cleaned is an Olympic worthy event. Sheets are often the last thing on my mind to get clean. “Nasty!” you say. “Doesn’t she know that will help them to not get sick as often?!” you say. “There has to be some time to work out for cleaning them! I mean, she is writing right now?!” you say. I know. Those thoughts plague me too. But most days, my head is too tired. My head is content to just have a bed. No matter if it’s clean. Most days, I just don’t have the mental energy to think about how I am going to rearrange my schedule to clean the sheets. If they get done, they get done. Too me, they are neutral in the span of eternity. I’m pretty sure that Jesus wouldn’t mind laying his scarred head on my dirty sheets if he needed a place to stay. I’m sure he would see much more behind those dirty sheets than a lack of education about germs, …

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

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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…