The spot where ________

If I asked you to drive me to the spot where you grew up, or went to high school, had your first kiss, or got married…how would it feel? As we saw it in the distance, slowed down, and the brakes began to squeal. When we opened the car doors and the air from outside rushed in…as we got out and the sun beamed down on us. How would you feel? As, you showed me around? For me, moments like that are almost their own energy. It’s like, as I stand there, if I inhale deeply enough I can inhale part of that moment because it is thick in the air. Like that energy abides there though the moment is long gone.

I actually enjoy reliving those kinds of moments in my mind. If you really connect you can feel just like you felt that day. Hopefully when I’m a ripe old age I’ll be able to tell a story just like Ninny Threadegoode, from Fried Green Tomatoes, that brings you right back to that day….

Well, so…you showed me around and we’re getting back into the car… and I ask you to take me to the place that changed your life. Not for the better (that you knew at first). Not the place that you were born. Or the spot where you bought your first home….the spot that changed YOU. as a person. That grew you. That was hard…the hardest thing that you’ve ever experienced. But now. looking back you know. that it changed you. For the BETTER.

Would you pause? Would you take me there? If you would happily take me there then I might question whether you actually have experienced this place yet…

Well yesterday. I revisited “the place where ____”…. where my life changed forever. A family member was in the hospital and I chose to go. I had to go. My love for her was greater than how difficult I knew that this was about to be. I pulled up. I felt the knot in my throat. I took some deep breaths. I looked around.

There was the tree that I parked under.

There were people still milling around, unaware that my life was forever changed here.

I expected to go back. I drove myself there. So I decided to use the opportunity to show myself that everything was ok. God had allowed my life to take this left for a reason…I know that now…and even though it has brought with it the worst pains of my existence…

It has brought such awareness and connection that I wouldn’t change it just to make my life easier.

So I walked. Instead of making a beeline for the elevator and heading up to the room. I walked. And breathed. To take some ominousness out of the big dark place that changed my life. I walked around the lobby, past the information desk, and into the gift shop. I’ve always thought that they have the best gift shop.

In God’s infinite wisdom and grace…I came across a sign that read…

Life is a chance to grow a soul.

Life is a chance to grow a soul…

Where I have been led has grown me…so much that sometimes I can actually feel myself being stretched. But, I have such a deep connection. Such an awareness of the beauty of things. Laughter. Light. Life in all of its forms. Touch. Feeling.

You think that you know love until your child who can’t control his head takes all of 60 seconds to lift his head and give you his open-mouthed version of a kiss on the cheek as you carry him to the car.

I don’t just live life. I feel life.

And that’s the intention of these times, these places, these spots where our lives change forever. If we embrace them in the midst of the pain and the tears. They force us to climb to a new plateau SO HIGH that we would never achieve it on our own.

Eating to Live

“Everyone has a doctor in him or her; we just have to help it in its work. The natural healing force within each one of us is the greatest force in getting well. Our food should be our medicine. Our medicine should be our food.”

~ Hippocrates

As the new parent of a special needs child there are many things that you don’t feel like you have control over: how often your child gets sick, how often your child goes to the hospital, how many doctors they see, how they need to be cared for, if they have a feeding tube, who comes to your house and how often, what they eat…. Then over time, you go from timidly sticking your toe in the shallow end of the proverbial pool that holds all of the things that your child needs to successfully grow, to giving advice to other parents about the proper form required to dive in the deep end. Life and experience will build your confidence in your ability to be a member of the team and make decisions for your child… and open doors of choice for you that you didn’t know were there, or were afraid to open. You will have more control than you know, because no one will know your child like you do.
The last door that I opened, after I conquered my fear, was feeding Karsten homemade food. Are you thinking… really? I know. Eating…such an ordinary act. But, the prospect of being solely in charge of Karsten’s nutrition intimidated me. Such a simple thing but with him it felt “medical”, instead of a natural parental task. As parents, we feed our kids. As a mother, it’s part of the pride of raising your child…”I feed them well and they grow”. But, if you have a child that can’t eat by mouth…then what?  You do like I did. You give them what shows up at your door every month that the dietician prescribed for them. Food delivered in little cans or cartons with a bunch of supplies. You take the bags, syringes, extension sets and milk and do as you were taught. Which, don’t get me wrong, is a very necessary and functional part of your child’s life. It is the reason that my son is alive…..
I could never stop thinking…
What if…there was a better way? What if I could marry the invention and science of the feeding tubes that keep our kids alive…with my FIRM belief that we’ve been created with an amazing ability to heal…
What type of healing?
Karsten hasn’t started to walk because I feed him a whole food diet.
He hasn’t regained his hearing because he now eats fresh fruit and vegetables.
But, his body does recover from sickness more quickly. His recovery time is more like a “normal” child’s. He gets sick less often. And his congestion is unbelievably improved.
I am not suggesting that this path is for everyone. It takes commitment and time. Sometimes more time than I would like to devote. But in those times, I remind myself why I do it.
It takes much less commitment than it did at first, because now I know what I’m doing. There was a definite learning curve! But, for those people interested I want to take the fear out of it because it can be done…
Having said that…on to the fun stuff…how to get started…and what I feed Karsten…
First Things First…
Talk to your child’s doctors. Technically you are doing something that is beneficial but you need to have a basic knowledge of nutrition, calories, and the bodies requirements to give your child a balanced diet and feed them in a safe way. Also, if you are reading this because your child or loved one has a feeding tube because of some other medical needs, those needs can affect what they need to eat, or avoid. For instance, some people with cerebral palsy need more protein and enormous amounts of calories because of the calories that they burn moving their bodies.
I consulted with Karsten’s pediatrician, his gastroenterologist, and a dietician before I made Karsten’s food. The pediatrician will see you most often. So… if you get their ok you can tell the other specialists that your pediatrician is on board. They may want to have your child’s weight checked regularly to make sure that they are gaining.
There are ALWAYS individualities that you have to account for in your own child’s food.
For instance, Karsten has two…first, he is slightly G6PD deficient so there is a list of foods that I avoid to make his diet optimally digestible for him… second, some kids with cerebral palsy, Karsten being one, burn calories at an enormous rate when they move their bodies.
So, Karsten’s formula is made for him, made with only food that he should have, and it is high in calories to keep him gaining weight normally. But, that’s also the beauty of taking the reins! You are tailor making something perfectly suited for your child.
Second Things Second…
You’ve talked to all of the doctors. You have your ratio of carbohydrate, protein, and fat. Now what?
 I highly recommend The Homemade Blended Formula Handbook it is priceless for people embarking on this adventure. It is THE reference for homemade blended formulas. It was written by dieticians and also has parent and physician contributions. AMAZING. The CDC also has a lot of nutrition information on their website. They give pediatric RDA’s and those come in very handy to make sure that your child is getting enough of what they need.
Once you have your list of ingredients you’d like to try and you’re ready…be prepared for some trial and error… and some throwing away of formula… before you come up with recipes that work for you, your babies stomach, and the ALMIGHTY feeding pump (if you use one) that can send your beautiful formula down the drain if it isn’t the right consistency. But once you find those holy grail recipes…it’s priceless…it makes you proud… and it’s easy.
Third Things Third…
Get a good blender, a good strainer, gather your ingredients, and start testing. During this time you’ll be looking for signs of food intolerance… irritability, arching, gas, vomiting, etc. My best advice for this time is take it slow, monitor for food intolerances, and keep it simple. If this is their first time trying food other than the formula that they are used to, think of their stomach as the stomach of an infant. Too many things mixed together can be a digestive disaster. Introduce simple recipes, slowly.
There are so many different schools of thought on diets that I won’t be biased in this section about any specific thing to try. Karsten and I have found our path and I love it! Karsten is on a high fat moderate carbohydrate vegetarian diet… and it works beautifully for him. The change in his congestion has been amazing!
I use only whole foods. Mainly organic. Lots of fruit and vegetables. Grain free, except for quinoa and other ancient grains. Grass fed dairy, but no milk or cheese.
What follows does not apply to infants. Karsten was almost 2 when he got his feeding tube and had already started solid foods.
The journey to freedom from the boxed formula…
Let me start by saying that it has literally been a journey. I didn’t put together a great mixture and suddenly we were blending away with no problem. It took trial and error to get to the point that we are at now, and you will without a doubt get there. Now we are a well-oiled machine.
Our home blended formula journey started out with a formula based on a recipe that I loved from an amazing mother who inspired me. After I found her blog I thought, I want to try this. Her daughter was on the same high calorie formula as Karsten before she started blending. And she, like me, decided to mirror the formula nutrients and come up with a whole food recipe. I bought everything that she listed in her recipe, blended it up, gave it to Karsten all lovingly and proud!
Then, I hit my first wall. Karsten is not her daughter. As soon as I put that formula in his belly I knew it was a no go. As close to human’s milk as goat’s milk is supposed to be, Karsten can’t handle any milk, his phlegm factory kicked into high gear! It actually made it worse. There were too many ingredients for him at one time, his stomach was too fragile. He started vomiting and I realized their path wasn’t our path.
I told myself, I can handle this I just need to do it myself and mix something that he can tolerate. I can figure out how to pack enough healthy calories into an amount that he can handle, using ingredients that work for him, that will go through his pump without clogging it. I’ve got this.
So my study deepened. It got even more off the beaten path. I took ideas that I liked from many places Arnold Ehret’s The Mucusless Diet Healing System, raw foodism, veganism, Dr. Joel Fuhrman’s Eat to Live, Dr. Perlmutter’s Grain Brain, Dr. Peter Attia… I figured out what the “perfect” diet was for him. Then, I adjusted as much as I could to get as close to that ideal diet as I could and it all came together, and it was a beautiful thing!
First, I took out anything that was mucus forming from his diet…eggs, goat’s milk, everything. His digestive tract needed to heal, he went from drinking perfectly made breast milk for a year and a half to a feeding tube and boxed formula, so we followed a vegan diet of EXTREMELY simple recipes, for about 2 years. With the digestive issues that he had at the time digestibility and healing were the most important things. Most of my recipes at that time had no more than 5 ingredients.
He had tremendous healing in his gut, so many benefits, but after 2 years it was time for his diet to evolve. After the first two years, because of his dystonia, it was impossible to get him to gain weight on a strictly vegan diet. He burns through calories like an adult, yet his tiny body can only process so much volume. It’s as if his body is constantly exercising. So I switched up the routine. I started to slowly add ingredients back into his recipes that I knew were beneficial, but he wasn’t able to tolerate prior, and I wanted him to consume regularly. I started with complex carbohydrates to see if that would be enough. It was an improvement for a while, but not enough for sustained weight gain. I added things one at a time and spaced them very far apart. If something didn’t agree with him I took it out to revisit later in the future. Until we came to the diet that has sustained his weight gain for the past five years, a high fat moderate carbohydrate vegetarian diet.

After I knew what his body needed to grow properly it was just a matter of finding the right combination of foods so that it met my criteria:

  • simple recipes
  • digestible
  • highly nutritious
  • calorie dense
  • tasty ( I know that he doesn’t taste them, but this is important to me)
  • able to sustain good weight gain

I trialed recipes until I came up with my current system! And one day I noticed it had become easy. It made sense for the health of the body and his longterm nutrition. It allowed me to easily vary his diet and it felt right….

We were blending like crazy and haven’t looked back.
Check back for tube feeding recipes and how-to’s!

My Little Conundrum

co-nun-drum            1: an intricate and difficult problem.
                                                                         2 : a question or problem having only a conjectural answer. 
                              con-jec-tur-e               : a conclusion deduced by surmise or guesswork. 
                       surmise                          : a thought or idea based on scanty evidence.

I have never been the type of person that enjoyed a good riddle. No riddles in any form. Not chess… sudoku… I don’t even enjoy crossword puzzles. Riddles are not and never have been my “thing“. In grade school I even hated analogies on tests.

So how is it that God saw something in me that I never saw a glimmer of in myself? I have been given, blessed with, had bestowed upon me…the ultimate riddle. And his name is Karsten. He is more than a riddle. More than an enigma.  He is a labyrinth. The journey to help him may be barely escapable, even for me the one carrying him along the path. But, the thought of helping him…of saving him from any pain or discomfort or struggle that I can is incomparable, it compels me. 

Nothing that I feel is any different than any parent that loves their child. The difference is that I’m able to look behind the curtain. I know the feeling of almost losing my child. The marker in my mind that separates my life into: before Karsten was sick, and after… and the fear that calls those emotions back to me every time that he is sick again. I’ve felt it so often that I can call on that emotion at will. Just like thinking of one of the funniest stories of my life makes me laugh. As I type, if I think about it………..yup, there it is. I experience daily what other parents are able to put aside and forget about… lock away in a box labeled TRAGEDY and open only in case of emergency.

This special needs life is sink or swim, with the consequences of sinking just as dire as they would be to stop treading water in the middle of the ocean. There’s no instruction manual. No help at first, until you find it. Hands down the most difficult thing that I have ever done, and yet I can’t give up. I won’t give up. I told a friend recently that love makes no sense… to do what I do is insanity… to give your life up to try to save another. But we do it everyday. Humans do it daily, consistently, over and over again…and her response to me…”it’s God’s insurance policy”. And there it is…four simple words that sum it up completely.

 My quest for his happiness and comfort defies logic. He is my El Dorado. My Atlantis. My one great adventure. I would travel to the ends of the earth… risk death and destruction…to help my son, my conundrum, one of the great love’s of my life.

This blog is about him, my little conundrum. But it’s not for him. It’s for others. People just starting out on this journey. People who know someone with a special needs child or adult. For people that pass a special needs person on the street. It’s my knowledge, as limited as it is…it’s my effort to make the road a little easier for the next person. 

Though, I pray that no one follows in my footsteps…I know that they will. So in advance, this is for you, and for anyone that might know you… who can bring you to this place to make it easier in any small way for the road that you’re about to travel. I don’t intend for this to be a solution. Every one of these children is so different that it can’t be…it’s just a stepping stone to help you on your way.