There is a something that many parents with kids with special needs deal with that is not shared frequently.

I see it every single day in the Heartland.

But, I know that this dirty little secret is one that many special needs parents share.

I’m ashamed to even share it with you….but for the sake of my sanity…I need to get it off my chest.

I hate feeding my kid.


I said it.

It is exhausting.

I chase him around all day long with sippy cups fortified with some sugary substance and added fat like coconut milk.

Because he has swallowing issues, the contents of those cups are the consistency of paste. And quite often – look like paste too.  YUM.

I have resorted to giving my kid whatever he will eat, when he will eat it, where ever he will eat it.

And this kills me.

This isn’t the kind of parent that I am nor do I want to be.

But, this obsession with getting my kid to eat is nothing like getting a “normal” toddler to eat.

This obsession is directly linked to every.single.thing he has endured. And the guilt of it all – whether rational or not – haunts me with every bite refused.

I carried my food refuser (let’s call him Evan) for 9 glorious months.  Ok – more like 6 glorious months because in month 6 we found out about his diagnosis.

But, even then, I ate impeccably well. I steered away from seafood, soft cheeses, lunch meat, anything that wasn’t cooked to the optimal temperature of safety.  I gave into some indulgences but for the most part…I ate so well because quite frankly…I thought to myself, “If I can’t grow him right…I will do my best to feed him what he needs.”

Then, my boy gets here.

Cleft lip and palate and heart defect…along with the perfect little tootsies and fingers.

My being and my instinct was to stick that kid on my boob and give him what I felt in my heart he needed…my milk.

But, as my breastesses engorged and ached, I knew that it wasn’t meant to be.  I would not get that bond of nursing with him.  So, I pumped and pumped and pumped until my nips and ‘reolas cracked and bled.

Then, I was told…”let’s feed him!”

Wait…I get to feed him!  I get to give him a bottle!  I get to feed my son!

Because, as a mother…that’s what we are supposed to do.  FEED OUR CHILDREN.

But, alas, the suck of the bottle was just too much.  With every suck and latch on the nipple (and I bought every one out there – Dr. Brown, Playtex, etc), I could see Evan begin to sweat and tire.

And my heart broke….I wasn’t going to get to feed him afterall.

But, I could perfect shoving tubes down his nose and throat into his gut.

Because – hell – that’s what it will take to keep him alive.

So I did.

I perfect the feeding tube placement like it was second nature…even though it was against all things natural.

I learned feeding pumps and learned to love (and loathe) the melodious “beep beep” signaling his “feed” was done.

Feeding tube cutie

Feeding tube cutie

And we are the lucky ones that got to graduate from the nose feeding tube to the tube that gets to be surgically put in my son’s stomach.

Everyday with his bath and with the nekkidness of being a toddler – the stomach tube protrudes from his tummy.  I don’t get to tickle his tummy in fear he will accidentally pull it out.  I have to stop him from sliding on his tummy on slides.  I have to explain to strangers who may get a glimpse of his feeding tube what it is used for.

But…the food gods have smiled down on me…and my boy learned to eat.

He learned to eat like a normal kid.

He learned to everything under the sun and drank from cups like a normal kid.


Perhaps I need to teach him “how to eat…Peel the banana sweet boy.  It tastes better.

Then…toddlerhood hit.

And while we rejoice in reaching milestones like reaching 2 years old…with it comes the excruciating picky nature of a toddler.

While this is “normal” stage and I am told by many that this too shall pass…the “normal” of Evan’s life includes a medical team that counts every gram gained and every gram lost.

Our meals are no longer times to enjoy each other at the table – our meals have turned into a math problem.  “If Evan eats 5 bites of the Macaroni and Cheese, takes 2 sips of juice, has one half of a grape…how many more cookies does he need to have for snack in order to reach our 350 calorie goal before we get to 1pm?”

Our excitement to try new foods is no longer an option because fighting for 30 minutes over trying the “super yummy food!” is 30 minutes that a calorie wasn’t ingested and the fight itself…well…probably ends in a tantrum…and well…that is just more calories burned.

Our meals out as families is no longer time for Mommy to enjoy not having to do dishes and cook it has turned into Negotiation 101.  “If you eat your chicken nuggets you can have your fruit. And if you eat 5 french fries…I will let you have a sip of water.”

Because, the fruit and the water have zero calories. And zero caloriees = zero weight gain. And ain’t nobody got time for that.


“Why are you trying to nourish my body!”

My pride of being a mother that focuses on whole foods and clean eating for my family….the love I have for creating a meal from scratch…has become all for not.  Because, sometimes…hot dogs, grilled cheeses, boxed macaroni and cheese…are all that my food refuser will eat.


Why yes son…we are making another cake for your consumption. And if you so choose…you may eat that entire stick of butter. 

And then we have those days where you are fully stocked with your “go to” meals and snacks…and the child acts like you tried giving it poison.  The meals and snacks not eaten…the drinks not drank…become alarms of panic and planning sessions for the crazy in our heads…I need to call his cardiologist…his GI doctor…his minister.

I have resorted to Costco trips for meal time because anything given to him in a plastic condiment container by a lady in a hairnet and stained white apron is apparently the best thing he could ever eat.

We have tried simulating those “Costco” samples by cutting up his meals and putting them in little containers all over the house.  But, alas…the allure of the Bagel bite from Costco just isn’t the same when it is sitting on the night stand in the bedroom.

I have also resorted into military style yelling…get all up in his face…and say things like, “Why the hell won’t you eat?!?” But, surprisingly…the loudness and anger in my voice doesn’t stimulate his appetite.

I’m told to “relax” and let him eat when he wants to.

I’m told that “he will eat when he’s hungry.”

I’m told “he can feel your stress…and that is causing him to not want to eat.”

I’m told  “this is just a stage and he will eat again soon.”

I’m told all these things…so let me tell you (my dear friends that just lovingly want to ease the burden of this all)….I know.

I know that he will eat when he wants to….but sometimes wants to can be days..

I know that he will eat when he’s hungry…but sometimes our kids don’t understand or know hunger because they have relied heavily on feeding tubes or their medications they take just make them not want to eat.

I know this is a stage…but when your sole goal for your kid is to survive…sometimes that “next stage” isn’t promised.

So…I hate feeding my kid (but I do it – don’t call CPS!)

The truth comes out.

Because feeding my kid…the most natural thing I can do as a parent…has become painfully unnatural.

But, then we have days where he eats 1/2 of pancake, 2 bites of eggs, 1 cup of milk (but he threw that up), 5 grapes, 3 1/4 graham crackers, 6 oz of juice, 5 potstickers (the wrapping only) and 3 bites of noodles…and it makes it all worth it.



He ate.  Hallelujah.