Congenital Harmony

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  • When Winter Returns: The Fear of School Sick Season With a Medically Complex Child

    Winter crept back in like it always does—quiet, slow, and full of the dread only parents of medically complex children can feel. For most families, winter means colder days, warm coats, holiday lights, and maybe the annoyance of a sniffle or two.

    For us, it’s a season of hypervigilance.
    Of scanning every breath.
    Of wondering, Is this just a cold—or the beginning of something worse?

    The Day the School Nurse Called

    It was a normal morning. Katelynn went to school like she always does, smiling, excited, ready to learn. And then the call came:

    “She has a fever,” the school nurse said. “100°F.”

    My stomach dropped. Not because 100°F is high—it isn’t—but because Katelynn doesn’t show fevers like other kids. Her body often hides what’s happening inside. By the time she spikes, she’s already in trouble.

    But what happened next still shocks me.

    The school nurse fed her anyway.

    A child with a MIC-KEY.
    A child who had already said her throat hurt.
    A child with an upset belly because she was draining mucus instead of coughing it up, something common for kids who physically can’t clear their own airways.

    Common sense says:
    If a typical child is sick, you don’t force food.
    But with medically complex children?
    We suddenly suspend logic.

    And it makes me want to scream.

    When “Just a Cough” Is Never Just a Cough

    At home—no fever.
    At the doctor’s office—no fever.
    For four days, the only symptoms were:

    • sore throat (from coughing)
    • upset belly (from mucus drainage)
    • a cough transitioning from dry to wet

    Not dramatic. Not severe. Not anything you’d rush to the ER for—unless you’re a parent who knows how quickly things spiral.

    On day four, the doctor finally heard it:
    The very beginnings of pneumonia.

    It took four days for it to show.
    Four days of doubt.
    Four days of fear.
    Four days of telling myself I wasn’t crazy for watching her every second.

    Medically Complex Kids Terrify Even Healthcare Workers

    And here’s an uncomfortable truth:

    Even the medical world is scared of our kids.

    Doctors hesitate.
    Nurses freeze.
    Specialists overthink.
    Schools panic.

    Their fear becomes our burden.

    We are the ones who have to know when to push, when to insist, when to question something as “simple” as a temperature reading.

    We are the ones who go home replaying decisions over and over:
    Did I miss something? Did they? Is she okay? Should I have acted differently?

    The Reality We Live With: Winter Sickness Is Trauma

    For medically complex families, winter doesn’t bring cozy sweaters and hot chocolate—it brings trauma memories.

    Trauma from the last hospitalization.
    Trauma from the time we almost didn’t catch something in time.
    Trauma from being dismissed, doubted, or ignored.

    Every cough makes our heart race.
    Every nurse call sends adrenaline through our veins.
    Every fever—real or not—pulls us into survival mode.

    What Schools and Nurses Must Do Better

    Because medically complex kids don’t always follow the “standard rules,” schools MUST operate differently.

    1. Believe the child.
    If they say their throat hurts, listen.

    2. Follow the parent’s medical plan religiously.
    Feeding a sick tube-fed child without confirmation? Absolutely not.

    3. Treat mild symptoms seriously.
    For medically complex children, “mild” can turn severe overnight.

    4. Communicate early and often.
    Don’t wait until a symptom gets worse.

    5. Recognize that medically complex bodies hide fevers.
    If the parent says this is normal for their child, trust them.

    Winter Is Hard Enough—We Deserve Support, Not Judgment

    Parents like me are not overreacting.
    We’re not dramatic.
    We’re not “too emotional.”

    We are experienced.
    We are trauma-informed.
    We are trained—because life forced us to be.

    We know our kids in a way medical charts never could.

    So when the school nurse fed Katelynn despite a fever and obvious discomfort, it wasn’t just frustrating—it was a failure of care.

    We need more from the systems that serve our children.

    Resources & Support for Families of Medically Complex Children

    Here are trusted places for information, advocacy, and connection:

    • Complex Child Magazine – Articles written by parents of medically fragile kids
    • Feeding Tube Awareness Foundation – Education on tube feeding and safety
    • Coping with Winter Illness in Medically Fragile Children (Cleveland Clinic)
    • Family Voices – Advocacy for children with special healthcare needs
    • National Caregiver Action Network – Emotional and practical support for caregivers
  • Helping Children with Feeding Tubes Feel Included During Holidays

    Helping Children with Feeding Tubes Feel Included During Holidays

    🎂 When Every Celebration Centers on Food

    Helping Children with Feeding Tubes Feel Included

    Holidays and birthdays are supposed to be joyful — full of warmth, togetherness, and delicious food. But for families like ours, where a child depends on a feeding tube, those same celebrations can sting.

    When food is love and your child can’t share it, you start to feel like an outsider in the middle of the party. You smile while plates are passed and candles are blown out. You say it’s fine — but deep down, there’s an ache that’s hard to explain. Because even though your child may be safe, nourished, and medically cared for, they’re missing something deeply human: participation.

    🎈 The Loneliness of a Full Table

    Most traditions revolve around eating together — Thanksgiving dinners, Christmas cookies, birthday cake, pizza parties, potlucks.

    For tube-fed children, these moments highlight the difference between existing in the celebration and belonging to it.

    • When everyone’s gathered at the table, your child may be off to the side.
    • When others cheer for cake, your child watches instead of bites.
    • When people urge, “Just let them try!” you have to explain — again — that it’s not that simple.

    Even when others mean well, the emotional weight lands on the parent too: the constant negotiation between protecting your child’s dignity and educating others with grace, even when you’re tired of explaining.

    💔 The Emotional Reality for Parents

    It’s a strange kind of grief — mourning what feels like another piece of “normal” stolen by medical complexity. You learn to celebrate differently, but part of you still wishes for a day when your child could taste frosting, nibble a cookie, or eat popcorn at a movie.

    This doesn’t make you ungrateful. It makes you human. There’s no shame in wishing things could be easier — or quieter — for once. The frustration isn’t just about food. It’s about inclusion. It’s about wanting your child to be seen, not pitied. Celebrated, not avoided.

    🌟 Practical Ways to Include Children with Feeding Tubes

    1. Shift the focus from food to connection

    Center the day on crafts, music, decorating, games, or storytelling — experiences everyone can share.

    2. Create symbolic participation

    Let the child have a “celebration smoothie” through their tube while others eat. Blend safe ingredients (under guidance) so they’re included in spirit.

    3. Offer choice and control

    Ask what helps them feel part of things — serving food, blowing out candles, handing out napkins. Participation creates belonging.

    4. Plan inclusive traditions

    Start non-food rituals: memory ornaments, gratitude jars, themed pajamas, matching outfits.

    5. Educate with kindness

    “They eat with their feeding tube instead of their mouth. It keeps them healthy.”
    Normalize curiosity; it’s how understanding begins.

    6. Include caregivers, too

    Offer help with setup, cleanup, or a brief rest. Support makes invisible labor lighter.

    🎁 Inclusion Is Love Made Visible

    Inclusion isn’t about pretending differences don’t exist — it’s about making space for them.

    A child with a feeding tube still deserves to blow out candles, be sung to, and open gifts surrounded by laughter. Their presence — not their plate — is what makes the celebration whole.

    As parents, we can help rewrite traditions. Belonging isn’t about what they eat, but who they are loved by.

    📚 Resources for Further Support & Education

    • Feeding Tube Awareness Foundation – feedingtubeawareness.org
    • Feeding Matters – feedingmatters.org
    • Oley Foundation – oley.org
    • The Mighty: Tube Feeding Stories – first-person essays on life with a feeding tube

    ✨ Final Thought
    Your child doesn’t need to eat to be part of the celebration — they already are. Their courage, joy, and presence are reason enough to gather.

    Let’s redefine celebration — not by what’s on the table, but by who’s around it.

  • Doffing clothing – stripping

    As we all chuckle at the nonsensical action, it really is a hardship to keep some children clothed. This whole clothing ritual as it can take a long time, multiple years even to get your children to don clothing themselves. Many are unable to complete this task. It falls under the ADL’s (activities of daily living). In short, this is the expectations of every person to accomplish on their own volition.

    Katelynn was dressed awaiting the school bus like any other day. She climbs those stairs which is a prideful activity all in itself. I think nothing of the day and continue about my business. When I get her off the bus, the driver and aid said we had an issue…(oh my what now my head screams) I was instantly tense.

    Matter of fact voice came from the aid saying she was taking her clothes off on the bus. I confirmed all of her clothes, not just her sweatshirt? I know it’s not the time of year to wear a sweatshirt, however my child is always cold. Status post open-heart surgery patients can have this tendency. So, she said no her shirt and undershirt. Just recently Katelynn being eleven, is starting to wear a training bra. Every day she must lift her shirt for her MIC-KEY button to be fed. She has no shame. At home, no biggie. It’s her and I. Public is another thing. I really tend to make the unaware public really shrink away.

    So this is a complex issue for a medically complex child: she took years (almost age 7) to don her own clothes, trying to teach a child to be proud of themselves when the public is scared of the unknown, years of therapy aiding her out of her wheelchair to increase her mobility for her ADL’s, ensuring to maintain her comfort in a unique homeostasis called Katelynn’s life, and many days teaching her ASL and to talk her 100 or less words.

    This continues to be a tiresome balancing act. How do you teach a child who doesn’t understand? Doesn’t understand ethical or sociable standards? Has seen mom celebrate her mobility achievements with some of the weirdest mime on crack dancing to now be told don’t do that? Her comfort has been my first and foremost goal – maybe there was a stickaburr in her clothes that was the cause – I wasn’t there, I don’t know. I’m just expected to fix it – hours later.

    How do I achieve the impossible. I shake my head as this is another uphill battle that didn’t occur in my presence, but I – mom all alone, are expected to fix and forever remedy this. I can only imagine what the next IEP meeting will consist of. Exhaustion just writing this makes me feel so overwhelmed.  

  • Parental Homework

    These past few weeks have been crazy. I wanted to take a minute to drop a blog in. There was a moment this week that made me chuckle and I’m hoping it will be for you too. So, the school uses this app called “ClassDojo” and I received a message from the teacher stating that please look in the children’s backpacks as there are important documents I’m sending home for you to review, sign, and return. OK, I thought, no big deal. It’s the beginning of the school year this was nothing unusual. Thinking this will be simple, I had homework instead of my child today.

    The jeep pulls into the parking spot, we exit the vehicle, Katelynn is taking a while. But my daughter is notorious for piddling, so I didn’t assume anything nefarious. We go in the house to complete our traditional take shoes off, dump our items, and off to play, wreak havoc, cook, or whatever is on our to do list that day.

    Knowing I have homework I request Katelynn to grab her backpack and bring it to me. Not that I couldn’t have grabbed it, but we are still working on listening and following directions. So, Katelynn ran happily to her cubby and brought me her things (more than what I asked for) but I received the backpack.

    I proceeded to open her clear backpack and pull out her folder. I’m anticipating this paperwork. To my surprise the folder was empty. I grabbed my phone and sent a message to the teacher saying that I did not receive any paperwork, did Katelynn get skipped or is the paperwork going to be sent later that week. As it was well after business hours, I did not receive a response.

    The next day I drive Katelynn to the bus stop. We sat there waiting for its arrival, we finish her AM tube feed like normal when the bus begins backing in our driveway. As Katelynn jumps out of the jeep in a hurry to get to school, something falls out with her – the paperwork. I get her on the bus safely, examine the back seat to find ALL the required paperwork for the teacher. I laughed at the situation, as none of the paperwork was urgent, I still wrote the teacher a note explaining the situation, knowing Katelynn she just chuckled. Katelynn is 11 years old and in the 5th grade. I can only imagine what things will be like when I ask for paperwork and she’s a teenager. I’m just happy that report cards aren’t sent home like when I was a kid. Technology can be a good thing. Hope this brightens your day as it did mine.

  • Potty training

    Teaching your child how to graduate from being incontinent wearing diapers to no need for diapers at all. This stage of life has mixed reviews with parents. Some parents are excited while others remain stressed the entire time instruction occurs. Using educational games like grabbing Cheerios for boys to “aim” for, or girls “have to cover” the toilet paper in the kid’s potty seat, is one way to attack this milestone. The older generations would let their child run around naked and usher them to the little potty when it’s time. Many resort to dancing around like a mime on crack singing a happy potty song. Once the concept is understood the progression to overnight potty training takes place. I shudder at the thought of that whole potty-training ordeal. Lots of patience is required along with consistency. This training may take merely a year or less for these children to gain understanding.

    On the other hand, children with additional obstacles become potty trained. Where do I begin? The reality can range anywhere from an elusive dream to parents who have the exuberant patience probably greater than that of a saint again with stamina for the consistency your individual pitter patter will require. Unfortunately for selected parents their child continues to receive continence training for multiple years, holding hope that their child will one day obtain physicality, possibly the mentality, to have this education sink in. Those are like me, nothing but stubborn will power in believing my child can accomplish anything.

    Yesterday was a bad day. I lost my mind with Katelynn. She sat 10 or so steps from the bathroom with alarms sounding every hour to use the bathroom, still resorted to soaking her diaper. My frustration with her was not only that it occurred, but that she sat in it, said nothing, then attempted to hide it from me. As a side note, I know she was using the restroom when prompted, because in my house the door never gets shut so I listen.  [Katelynn doesn’t remember to ever shut doors, unless something is bothering her, then ALL doors are shut. But that is a whole other topic]. The progression of this daily act has a wide birth of outcomes. Some children pick it up quickly, others are a little more stubborn with their adherence to the ritual as a whole. The reality is that some if not most of our children will continue to wear some sort of incontinent aid.

    To be honest the part of incontinence training I long for is no longer having to think about ordering them or adding them to the “need to buy” list, the actual buying process, waiting for their drop ship date or the buying at a brick and mortar. The price and hunting to find sizes that are above size 6 diapers for toddlers and below small adult incontinence covers has changed over the years. The hunt has become easier with companies like Amazon, Walmart, and even some DME (durable medical equipment) stores not requiring a prescription anymore. If order placed which required a prescription, most of them also required the supplied to be covered by insurance. Only long term insurance covers incontinence items which traditionally is only Medicaid, with a few exceptions.  

    For those of us who do not qualify for Medicaid, we have COVID for the vast changes. That timeframe taught the world if businesses which to continue they need to take a hard look at their practices.  One of the changes was things like decreasing the script requirement and opening the range of in-between sizes to be located and purchased easier.

    All of this is to say, it’s ok our children have not perfected this task no matter what age. As loved ones, we will just need to ensure plentiful stock, insurance or self-pay.  My reminder is as a parent I need to offer myself grace for having a bout of frustration when reality intersects expectations. I as a parent nor Katelynn as a child will be perfect, we just need to meet in the middle. Darn now that song about an Old Georgia Pine is going to be stuck in my head…now yours too.

  • Patience

    Today was just another reminder of how patience it takes to raise my child. She came home from school, 5th grade. Happy and bubbly as everything, all day was great. When I ask her how her day was I get a reply of “school” with a question mark voice inflection.

    As mom I wake her up that morning, thinking I’ll simply hand her diapers and clothes and leave. Little to my mistaken thought, the box of diapers was empty. Ugg how I used the last one when I came in about 1130 to disconnect her feeding only to find her soaked having to change her and bed. Exhausted I told myself I’ll deal with it in the morning.

    Ta Da here we are again, I have to grab the box in the other room, find the box cutter opening the box, to merely grab one out – put the rest away “later.” Hearing the entire time my child crying and beating on her safety bed to get out to go to school. She has already started the day upset for my lack of preemptively putting the new box of diapers away.

    The coffee isn’t even finished brewing yet. I’m getting Katelynn out of her bed to get dressed. As she was upset, the following directions to get dressed is non-existent. I dressed her. While playing and joking to get her smiling again hoping to forget my exhaustion mishap only moments ago.

    She’s dressed I get her hair and teeth items set for her to continue the morning routine – Yea I’ve poured a cup of coffee and ingested a sip. Seeing the time, I know we must pick up the pace to meet the bus on time. I gather her food supplies and meet her in the living room. She has a hairbrush in her hands and mom likes to do a quick swipe for approval or pinup.

    My child is tube fed via a MIC-KEY button 5 times a day and due to slow digestion, the times cannot be rushed. I know – I thought that too. NOPE. She eats every 4 hours which allots me some sleep now. Anyways, I digressed…

    So, I get her all hooked up, send her in to get her shoes and I raise my coffee cup for another sip. I hear MAAA!!! [Katelynn’s version of Mom] So that sip turns into a gulp and throw my cup down. Get to her and can’t find her shoes. I have placed them in the same place for months now in preparation for school mornings. Crazy me, it took 5 years for her to merely don her clothes all by herself. Her shoes were placed, wrong feet of course, but she finds it comfortable. As a mom we must pick your battles, this was not one I chose.

    I tell her to grab her backpack, I have prepacked it the evening before, and we rush towards the door. She gets in the car and sets off her feeding pump alarm. I stopped the car, fixed the alarm on her pump. Make it to the bus stop to hear, “uh-ho” from the backseat, simultaneously the bus backs into the designated pick-up location. I hang my head with defeat. The bus driver and aide said it’s not a problem we’ll take her and get her cleaned up. Embarrassment left years ago, I handed them the change of clothes I keep in the car and thanked them profusely. As the bus drives away, I exhale. I am exhausted. I feel all alone.