Infinite Love

“…there are things that you will only be able to learn by the weakest among us. And when you snuff them out, you are the one that loses.” ~Gianna Jessen

November 8th two thousand and twelve… I caught a glimpse into the infinite that is love… and I now know with every fiber that it is the only reason for our existence. To love and be loved. Not duty. Not honor. Knowledge. Responsibility. No. On November 8th two thousand and twelve I met the ferociousness that drives us all. It filled me and radiated from my fingertips. And it was love.

That day started like any other not too worrisome Karsten sick day. First thing in the morning I  phoned the pediatrician. “Good morning Children’s Primary Care”… their voices soothe me in times of uncertainty.

  A sigh of relief and a tiny pause to express my gratitude as I thought.

 They know me, they know Karsten, I know them, they fit me in. I can count on them. Thank you.

“Dr. Robbins is busy till the afternoon we can fit you in sooner with someone else if you’d like”…

                                  His fever is only 101.

and I responded “that’s ok I’ll wait. Doctor Robbins knows him.” Fast forward a few hours. We get dressed. One last temp before we’re out the door. It’s staying steady at 101, I feel relieved. We make it to the appointment. I’m giving him water in the lobby. His breathing is a little noisy. He’s worn out from the fever and our sleepless night. They quickly get me a room so that we can have privacy. I pick him up and pat on his little chest as we wait. Karsten drifted off to sleep. The doctor came in and listened in his always attentive and calm way. He listened as I told him that we were up all night and Karsten was sweating all night. How his feet were cold and I thought that he had the flu because I had a horrible flu with the same symptoms a couple of weeks before. He replied “I’m not terribly worried, his vitals don’t look too concerning. His heart rate is elevated, but that could be because he’s sick……………….the only thing concerning me is how sleepy he is. I know him and he’s usually very alert.

                       My heart feels like it stops and then restarts twenty times faster.

“Well he was awake all night so I think he’s just sleepy”

    I started to justify. Why am I justifying?

Looking back I think I just didn’t want anything to be wrong. Not another thing. Not again. Denial never keeps me from getting the job done but it does creep in with fear when I can feel in my spirit that something is brewing. So when Dr. Robbins told me “I’m probably ruining your night. And it’ll probably be nothing. But just in case, I want you to go to Rady’s and have some labs drawn” I knew what I had to do…

                    ” I didn’t pack for the hospital, can I go home and get his things”?

“Yes just go sooner rather than later”. I pack. We make the drive. The triage nurse is looking him over and asks “is his belly always that distended”? Time slows. down…. What? Thinking back it feels like it took me an eternity to look down. I can’t count the questions that raced through my mind as I looked down to see what he was seeing.

              “What do you mean his belly is distended”?

                                         “Is his belly distended”?….

                                             “Dr. Robbins didn’t mention his belly”?….

                                                  “I didn’t notice his belly”?……

                                     “or did I”?

I looked down and there it was. And that is when the replay in my mind hits fast forward. They take me back. help them pick him up. he’s on a table limp. yell for RT. ask me what he ate. they move him to another room. people SURROUNDING him. I can’t even count them. Karsten looks so cute in his jammies and bare feet. God I love him. talking about blood gas. and intubate. RT asking over and over how old he is…..

He’s six years old”, I answer.

I don’t think that they knew that I was there because all of a sudden a doctor swirled around and filled the void between me. and him. Bone of my bones and flesh of my flesh. My love. She mentioned putting him on a ventilator and, for the moment, the last bit of my strength was used up.

And that’s when the door opened and I met it. Infinite love. I know that it’s in us all of the time, but at that moment it was like the trap door that only allows love to trickle out between its hinges (probably for good reason) exploded and I had access to it all. All of the love that is, that ever was, and ever shall be. All of the love that anyone in the universe thought was theirs at that moment was mine and I was feeling it for my child. It filled me. It was so strong it could have given me the strength to tear that whole building down, or in a millisecond could have spontaneously squashed my heart. I’m convinced it could have lifted me right off of the ground and left me to levitate right there in the emergency room… the forces of gravity did not apply against what I was feeling. I wanted out. Now! Rewind time. Not again. Why is this happening. Why him. Kill me now. Take me instead. I don’t care because what I’m feeling is annihilating me anyway. My heart is crushed.

Days before this we got the keys to the house that was made for him. and now there I was sitting on a brick wall on the side of the emergency room giving Karsten’s history through streams of tears to a medical student and an intern as my baby lay down the hallway

                                                                                                  and his life lay in the balance.

I wondered to myself… Is life bittersweet or just bitter? Where is the justice in this happening to Karsten for the second time? He IS innocence. WHY? Is there a lesson in this? Part of me hoped not. That would be a piercing pill to swallow that my son was in this state for a lesson. My sheer will wouldn’t allow a testimony to someone else as a reason to justify his suffering.

                                                          Breathe.

We spent a month there. Day by day he recovered. Day by day he surprised his doctors. Not every day was tear filled. My baby was fighting to come back to me. One day I’ll tell you the story of Maria… the sixty year old woman with cerebral palsy that I met downstairs in McDonald’s on Karsten’s second day there. She felt like a guide and I felt like I don’t have all of the answers but nothing is by chance.

We are both mostly recovered. His lungs give him some trouble from time to time.

                                                                                    And my heart gives me some as well.

I don’t have any profound wisdom that I gained from that experience. I do know something more of the depth, breadth, and infiniteness of the love that we are capable of. I feel more. It surprises me that feeling more was even a possibility.

I fight not to fear more.

The one thing I know even more than ever is that love is the only thing that matters. Its been almost a year. Now I can talk about it. and now I’m revisiting that experience to sift through the rubble it left behind to try to find closure. I want to move on with my whole self, my whole heart, and not just the fractured pieces that are left after the second time that I almost lost my son.

My mother once told me that my great grandmother’s words were life is grand as long as you don’t weaken and I know them to be true. As bitter as life and love are they are absolutely just as sweet. And it is more than worth it to me to move on and risk with my whole heart to taste that sweetness again.

                       …there are things that you will only be able to learn by the weakest among us.

Patience. Acceptance. Appreciation. Perseverance….. Love.

She

My notifications buzzed, a text. Pictures from my daughter. She’s been spending the summer finding her voice behind a camera’s lens. I love to see her thoughts. As I scrolled, there was my niece, my first baby. They’re at the beach. I paused and grinned at the beauty that is she. And I thought…

I have lived through so. many. of her moments.

                                                                             Her stages.

                                                Her periods.

Her right nows.

Like the one where she refused to eat anything but soft boiled eggs, feeding her was joyous during that time. And when she couldn’t say her t’s, so every truck that we passed she would say “look tia, a fuck”, she didn’t even notice my laughter.

And at that moment, what I was seeing… I just hope that she can see that. I know that I, as a Black woman, went through this period where I felt like maybe the universe had gotten it wrong. There was a time when, You’re pretty for a Black girl was actually a compliment that I would accept. I hadn’t quite figured out what to do with all of the… difference that I’d been given, it takes a while for many brown girls to realize the uniqueness that is your presentation to the world is actually a stunningly beautiful gift, an expression of the divine herself. In fact, you feel like you should probably hide it. Smother it. Suppress it. Smooth it’s corners. Soften it. Turn the saturation down on its brilliance. and the messages from the world reinforce that.

Until one glorious morning, you awaken.

You look at the thickness of your lips, the shade of your brown, the kink of your hair and a smile starts to form at the corners of that enviable pout as you nod your head to the universe, your mother, and your father in thanks for the creation that you see before you. I hope that she has experienced that day.

I hope that on that day, as she stared at those braids in the mirror until her vision lost focus and her mind began to drift, she imagined those braids in a cute bun, a few strands untucked framing the striking shape of her face, the gift of our ancestors. I hope she heard the noise in the distance that blew into her mind to snatch her train of thought,

Dr. Jones, we need you in here.

Then, the cry of the orphaned toddler that called the Kenyan orphanage that she was spending the summer volunteering at home, who now claimed her as his mama.

Did she feel the brush of the devotion of motherhood across her heart as she imagined herself kneeling down to enfold him in her love? I hope that as her eyes traced the outline of her mouth, she grinned as she imagined herself being brave enough to taste langsat and durian as she weaved through the markets on the streets of Phuket, beaming that at 18 she was able to save and send herself to Thailand. I hope that as she gazed at herself, and she wiped her eyes in disbelief, and rested her hands on her cheeks and squeezed to try to contain the joy  of the possibilities, I hope that she saw that her life is a literal nebulous cloud of opportunity, the truth of which is is entirely up to her.

You are the divine experiencing itself in one of numberless forms. You are quite literally God’s imagination. Whatever you want is yours and everything that you are is perfection.

 

Manna from Heaven

One week ago today marks the first day of this school year that everything went smooooooooooth.

Yes, the year did start 2 months ago. It takes a bit for this train to start rolling smoothly on the track. From the time that I opened my eyes that morning, till drop off, everything fell into place perfectly.

Karsten was up on time. I gave him a bath in record time. His older brother, Kaedan, actually brushed his teeth and got it done. His usual routine is to paint toothpaste onto the toothbrush with his finger, and then rinse said finger under trickling water in a 10 minute prep to brushing his teeth. While at the same time I repeat

                    Kaedan brush your teeth

                                                                       Kaedan brush your teeth

Kaedan brush your teeth

Kaedan brush your teeth. Each time I happen to pass, back and forth, as I finish my morning routine. After which, I usually catch Krystana, my oldest, putting her hair into a ponytail without brushing it out first.

Another pause to help with her hair, because at that point if she does her hair again correctly, by herself, she’ll be late.

But not that Monday!!! Kaedan brushed his teeth. Krystana was standing in the entryway, early, looking like she stepped off of the set of a Teen Nick show. And, Karsten and his (what seems like) twelve bags and pieces of equipment for school were in the car and delivered on time.

Walking back to my car, after I dropped Karsten the littlest bear off at school, I had that uneasy feeling of a mother that spends all of her time with her children. The one where it feels like something is missing and you don’t know what to do with yourself because they’re gone, and you’re ALONE.

Warily excited by the limitless possibilites of potential time by myself, I decided to take the long way home, just because. It’s the little things. and that Monday that little thing was being able to drive aimlessly, leisurely, indefinitely… indefinitely until 2:30 p.m. but still…

Slight freedom!

As I drove, listening to Adele and Lauryn Hill instead of The Lorax or Yo Gabba Gabba, I took it all in. Feeling, and listening to, every second of every breath. I was present and enjoying every millisecond of this little reprieve.

And then I had the wildest thought… I’d been meaning to go check out the Bikram yoga studio near me. For about  a week now I thought about it, googled it, pulled out my old exercise gear, and got a new yoga mat.

When I have something in my mind it kind of becomes a crazy flurry of research and planning obsession until I experience it. Especially insane, in this instance, because I had never experienced the inside of a Bikram studio.

The next thing I knew I  was pulling over and mapquesting Bikram Yoga. And, then I was on my way.

Now, it was a cloudy day. and I’m sure I was a tad disoriented from the foreign experience of being able to do whatever I wanted. I could feel the neurotransmitters declaring Code Red inside of my brain from the liberty…

But I could swear, that as I drove up to this little industrial building, I could see the hands of God disappearing behind a break in the clouds and bright beams of light gleaming from the walls.

Something inside of me was telling me that this was the solution to all of the aches & pains that had me wondering if my body was falling apart.

I pray endlessly for my body to hold up to the assignment that its been given.

The ache that I feel when I put my head back and look up. The numbness and tingling that radiates from the pinched nerve behind my shoulder blade down my arm and fingers. The soreness in my back. The 40 stress pounds that I’ve allowed myself to gain. I had a really good feeling about this exercise that I had never ever experienced before.

I went inside and met this amazing beam of light named Katie. She told me all about it and I signed up to come back to a class that evening to try it out.

When I opened the door to the 6:30 class and met the wall of heat that was waiting for me… I began to second guess the divinity of my  inspiration.

I’m sure you know since it’s become a sensation, it’s 105 degrees in the yoga room and after the class I found out it’s also 40 percent humidity. Which explains why literally the whole class I kept repeating in my head, “This doesn’t feel like 105 degrees”. “Why is it so hot in here”?! Accompanied by thoughts of running out the door and jumping out of the window. Suffocation. and a daydream, in which all of the yogis and yoginis surround my lifeless body as it lay crumpled on the floor still stuck in half tortoise. and a glance around the room to guess who would be the one to run out of this heat and call 911.

There was an upside to the whole experience. After I learned to breathe only through my nose, the key to the heart pounding panic that I felt initially… as I did each asana, I felt my entire checklist of aches and pains during that class in a way that hurt SO good! I went so far into rabbit I only stopped out of fear that I would snap my neck. It felt sooooo good. Like the bruise that you can’t stop touching.

The torture eventually ended and we left the room. and oh my goodness! The bliss you feel when the rush of cold air hits you after stretching out all of your aches and pains. They should seriously invest in a harp player to sit there in the lobby and strum as people exit the room. It was that good!

I was hooked! Inside of the room, during the panic of trying something so foreign and not knowing exactly what I was doing I had already told myself that this was torture and this was not for me. “This is crazy! How do these people do this? Why would they keep coming back here and actually walk into this room? I am never doing this again” were pretty accurately my thoughts before I learned how to breathe, relaxed, paced myself, allowed the stretch, and left the torture chamber.

But afterward. Oh my goodness! I. was. hooked!

This was it all along. Another reminder to dwell more in trust than doubt. It was the answer to everything I was asking for and more. The “and more” I knew that I was yearning for, but I never expected it to come in the form of hot yoga. The “and more” that I found is a moment, for a moment it gives me a sense, illusive, but still a sense… of certainty. You must follow the rules. The rules are concrete. Certain. You know what to do. You know when to drink. The way you should breathe to relax. Your body is molded by the work that you do but guided by someone outside of yourself. Your job is to listen to them, follow the directions when you hear them, and only when you hear them.

For 90 minutes I am not at the helm of my ship steering in calm water that at any moment can turn into the perfect storm. I am clay laying and waiting to respond to the call of the one there to shape me. In fact, my practice is better when I wait for their instruction and follow it. As I watch myself in the mirror, it looks effortless.

Strangely, it is very structured but it makes me feel so free. easy. relaxed.

I’ve finally found something that can combat the unavoidable stress that is a part of my life. In the most absurd place. hot yoga. The image of me torturing my stress away makes me smile. But in the philosophy of Bikram, which makes so much sense, “if you want to make a knife what do you do to the steel”?

In my everyday life I have to be a razor sharp sword. This amazing place molds, stretches, releases, focuses, makes me endure, strengthens. So that when I leave I am sharpened and ready to fight the battles ahead.

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…..
BUT…
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.