I run into it nearly everywhere I go, often in the form of a lingering glance or questioning eyes. My baby needs oxygen, and is connected to an oxygen tank and pulse oximeter. We are admittedly a bit of a spectacle.
Some will speak up, and their words are an echo of what has been asked many times before: “What’s wrong with him?”
What’s wrong? A lot is wrong.
A lot of long, wrong words. Spina Bifida, myeloschisis myelomeningocele, hydrocephalus, neurogenic excretory systems, Arnold Chiari malformation, hypotonia, wrong, wrong, wrong.
All of thesewrongs have taken away the life I once hoped for my kids.
These wrongs have caused pain and suffering we never anticipated.
These wrongs have made a lot of hard.
My precious little boy has to live his whole life with challenges nobody would wish for. No breaks from it. No vacations. People staring. Strangers questioning.
It’s not fair.
It’s not easy. It’s one of the last things on earth I wanted.
But life isn’t fair.
We aren’t promised easy.
“Hard life” has shattered our securities to pieces. Raw and bleeding, we see clearly that there’s nothing in this mess of physical limitations to offer us comfort. We can hope in the future, and manage the present the best we know how, but it could all fall apart in an instant.
The weight of permanent defects is heavy. Just to keep his little body functioning is time-consuming toil that takes up much of each day.
All the wrong can be overwhelming. But by staring “wrong” in the face, our lives have been made richer. Each beaming smile, adorable reach, clumsy grasp – they are all special gifts. We have seen good. God is creating good.
In darkness, the Light shines brighter. The deepest valleys and darkest pits are not out of reach of God’s presence. “The darkness and the lights are both alike” to Him (Psalm 139:12).
We lament our losses, and our Comforter meets us there. Sharing in our sorrow, and understanding our pain. As ashes of burnt dreams litter the ground, we realize those desires weren’t really that important in the first place.
Even in a life with so much wrong, God is weaving good.
Beauty emerges from pain. And eternity looks so glorious.
Each time I’m asked “what’s wrong?” I’m reminded how much is right.
He heals the brokenhearted and binds up their wounds. Psalm 147:3
Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and my burden is light. Matthew 11:28-30
Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change. James 1:17
The light shines in the darkness, and the darkness has not overcome it. John 1:5
If you were to ask which appliance in my kitchen would be the hardest to live without, I would hardly hesitate before answering. Hands down, it’s the Instant Pot, and the hype surrounding these contraptions is mostly true.
There was definitely a learning curve for me. I had no experience with using pressure to cook food (besides that one time my hubby was certain I was going to blow up the house with the stovetop model I found at a yard sale).
Note the paper towel shoved under the side to level the pot. 😝
When we left our home because of hyperreactivity due to mold, I got rid of my whole kitchen of gadgets and gizmos. The first thing I ordered on Amazon was another 6-quart Instant Pot.
Since it’s electric, so much of the tedious fuss is taken out of the pressure cooking process. I didn’t let anyone in the kitchen during the first use, just in case it exploded. 😂 But it has never given me reason to think it might explode, unlike its stovetop counterpart.
The Instant Pot acts as my electric cooktop when I don’t have a kitchen available (the sautè function is so handy for boiling water or heating up leftovers). As long as we have electricity, we can have a home-cooked meal in minutes.
Normally our Instant Pot is cooking things like noodles or a cut of beef. However, I decided to try something a bit more adventurous this week and see if I could pressure cook a cake. My birthday was a few weeks ago and we never got to celebrate, so a chocolate cake was sounding pretty good.
“Some people say that the thoughts that you think and the words that you say is who you really are.” This profound statement came from the backseat of the car one day as we were returning home from running errands. I heartily agreed with my son, who was 5 at the time, and shared with him the verses in the Bible, “As a man thinks in his heart, so is he,” and “Out of the abundance of the heart the mouth speaks”.
I’m not sure if my little philosopher fully understood the concepts that he was proclaiming from his car seat, and the huge implications that they have in each of our lives.
In the scientific realm we are only beginning to learn the full effect these truths have on our brains and our bodies. Caroline Leaf, neuroscientist and author of “Switch On Your Brain”, centers her “21-Day Brain Detox” around the concept of “taking every thought captive” to cause a transformation in a person’s mind. Dr. Leaf was taught in school that the brain was a “fixed and hardwired machine”, and that brain damage was hopeless and untreatable. However, now she knows differently, and science is proving this antiquated theory untrue.
Our current cleaning battles go a bit beyond dust and window smudges. We often feel like we’ve stepped into the realm of biowarfare – specifically when dealing with mycotoxins. When cleaning our belongings, we usually have two main goals:
1 – remove mold spores
2 – denature and mitigate mycotoxins
As much as we try to avoid them, mold spores that float through the air are not our worst enemy, and with some elbow grease are fairly easy to wash away. The mycotoxins, however, are a different story.
Have you ever found yourself stuck with a stack of wet clothes that are needed for the next morning – but no clothes dryer?
No? Ha! I may be the only person with this problem, but *just* in case your dryer breaks down or you decide to pursue mold avoidance in a hotel, this could come in handy one day.
Since we’ve been hand washing and line drying most of our clothing and linens, I’m often racing the clock to get clothes washed and dried so they can be worn the next morning. This tip speeds up the hanging time needed to dry our clothes, and it’s very simple!
Just about every day in the news across the US you can find a story about contamination in the local water supply. These stories include reports of Legionnaire’s, a bacteria that is extremely harmful and fatal about 10% of the time, outbreaks of cyanobacteria, or reports of contaminates (like specific toxic pesticides) found in the water. You may be thinking that you have immunity to these water issues, after all, your local water municipality has everything under control, right? Or do they… ?
The water that comes out of your tap is taken from lakes, reservoirs, and ground water. Some of our tap water is sourced from recycled sources. As an example: Las Vegas. One hundred million gallons of raw sewage is treated daily by the Clark County Water Reclamation District. Ninety million gallons of this is released from this water facility back into the “Las Vegas Wash”, which feeds Lake Mead, just outside the city. Yes, when you visit Vegas you theoretically could be drinking water that once resided in a toilet!
So now that you’re grossed out, you may be curious to know: What’s the sanitation process of water that’s drawn from these lakes and reservoirs and then delivered to our homes?
I used to ignore clothing tags that said “hand wash only,” figuring if it couldn’t survive the gentle cycle in the washing machine, it wasn’t worth the extra fuss. Recently the tables have turned, and instead of only doing laundry in the washer, my arms are elbow deep in a tub of water – hand washing clothes, no matter what the tag says.
Since our bodies aren’t ridding themselves of toxins as efficiently as they should be, I’ve been doing my best to minimize exposure to toxins in the first place. Hand washing our clothing and bedding has successfully lowered the frequency and duration of hives and anaphylactic reactions.
Detergents build up inside washing machines, and when our clothes run through a machine, they pick up the residue of the detergents used in previous loads. Even our favorite dye-free, scent-free, hypoallergenic detergent caused rashes on a couple of the kids, so I’ve resorted to gentler options like vinegar and baking soda.
This week we tried a new treat – banana boats – in a toaster oven! This yummy treat consists of chocolate and marshmallows, melted inside a banana that’s been split in half.
Normally these are made in a campfire, nestled among the coals until the marshmallows and chocolate are melted into yummy goodness. Since we don’t have a campfire, the toaster oven did the job very well, and was less mess in the long run.
Only three ingredients are needed: marshmallows, chocolate, and bananas.