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An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

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Release: A NICU Fairytale

I was in the NICU with my daughter, Charlee for 48 days. It was not a good place for us. After Charlee failed a swallow study, it was determined that she needed a g-tube. That surgery was hard on her. After that, doctors ran a sleep study. Computers recorded indicators of airway obstruction and with that data, NICU doctors urged us to consent to a tracheostomy for Charlee. We didn’t feel Charlee could handle another surgery and we declined. We were discharged shortly after. Within twenty-four hours, we were back in the emergency department. Admitted to the PICU, they found that Charlee had a collapsed lung caused by a pleural effusion. The computer had misread her shallow breathing caused by the condition as obstructions. She didn’t need the trach after all.

I was upset that a collapsed lung had been missed in the NICU. I was upset that the recommendation of the trach, a decision so weighted for our family, was not more carefully considered. And I was upset at how it felt like the NICU washed their hands of us because we declined the trach. I didn’t have time to voice my anger because I was consumed with round the clock care Charlee required at home and preparations for neurosurgery. Charlee had a condition called hydrocephalus in which excess spinal fluid was building up and putting pressure on her brain. Like the providers in the NICU, we didn’t feel like decisions made were right for Charlee. We were running out of time and proceeded with the recommendations of the neurosurgeon. An attempt to surgically create an opening in the floor of the third ventricle failed and we were back in the emergency room ten days later for a shunt placement. I felt like everything that I had to hold in was going to explode if I didn’t get it out somehow.

While Charlee was recovering in hospital, a family support worker had dropped off a care package. It included a sketchbook and colored pencils. While Charlee slept, I drew ships rolling in whirling waves and clouds playing in the wind. It was a good distraction, but then I drew out a cartoon poking fun at the hospital culture to vent my frustration with the lack of patient space it provided. It felt really good. After that, I started to draw out Charlee’s NICU story in a graphic novel format. As the story started pouring out of me like an opening dam, I felt my anger lifting. It allowed me to work through what transpired during our time in the NICU. The more I worked on it, the more I felt I took back control over the events that happened to us. And I felt like I found some beauty in those traumatic events as the love and devotion we had for Charlee shined bright through the darkest moments of the story. I called the book Release: A NICU Fairytale ultimately because it was about Charlee’s release from the hospital, but also about the release of emotions this project gave me.

#NICU #Trauma #MedicallyComplex #MedicallyFragile #Healing #medicalmama #Disability

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Being Medically Fragile in a Pandemic

Hello. My name is Susan and I am immunodeficient. I have to go to in person appointments for lifesaving treatments. I am the sole caregiver for my aging mom who is a disabled veteran that just learned she needs two surgeries.

But I am also a person who has been bumped down a priority list for vaccines to end the pandemic.

When this pandemic started, we had shutdowns to protect us. Then it was mask mandates. And now it is supposed to be vaccines.

But here is what has happened.

My hopes have been dashed.

ACIP decided my life is not worth getting a vaccine.

The CDC decided my life is not worth getting a vaccine.

My state decided my life is not worth getting a vaccine.

And politicians are skipping the lines.


I was a member of phase 1b. We would have been moving to getting vaccinated at the end of January or beginning of February.

But as of December 20, ACIP and the CDC prioritized healthy workers over people like me who could die from this.

And as of December 21, Alabama adopting the ACIP guidance means vulnerable patients like me are now AFTER phases 2-4. Yep. That’s right. Vulnerable patients who have the highest risk of dying are now basically going to die waiting to get vaccinated.

In my state, chemo patients cannot even get chest ports for their continuity of treatment. In my state, people like me are dying in exponentially higher rates than those who are working in stores and schools and banks.

Yet my state just bumped people like me way way down the priority list for the vaccine.

And they don’t seem to care.

No one is advocating for us. No one is listening to us. And no one seems to care about protecting us anymore.

They call it COVID fatigue.

But here’s the worst part for me.

I am the sole caregiver for a veteran who cannot have surgery until I am vaccinated. And I am going to be lucky if I live long to be vaccinated.

I have a bucket list to fill before I die to make memories with my aging mom. And everything is indefinite.

Night to Shine postponed in person. Indefinitely.

That return trip to D.C. postponed. Indefinitely.

That second trip to Disney World. Postponed. Indefinitely.

That first trip to St. Louis, to Nashville, to Mall of Americans. Postponed. Indefinitely.

The only special needs group in my area that I can afford to go to? Postponed. Indefinitely.

For the want of a vaccine that now I may never be able to get because I was bumped down the priority list.

Last week? I was feeling lighter with hopes of a vaccine around the corner feeling secure about my position in phase 1b.

This week I cannot stop crying and being angry that my government has decided that my life is not worth getting a vaccine to keep me from needing the hospital care that will not be available to me anyway.

#MedicallyFragile #COVID #covidvaccines #immunodeficiency

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Nursing and in home care during COVID-19

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE


Our Twins Have Cancer. Here's Why We Wear A Mask #Cancer

I have a moment to myself. That's it, a moment.  And I am ok and happy with that.

Our two year old twin girls, Ella and Eve both have a rare aggressive #Cancer .  They not only share the same DNA, but the same Cancer.   Everyday is an uphill battle. But, they are my heroes. #heroes

They were both diagnosed with cancer at 1 month old.  They've probably spent more time in the hospital than at home.   They've endured chemotherapy, ostomy bags, seizures, feeding tubes, deadly infections, uncontrollable blood pressures, septic shock, life support, countless examines under anesthesia, and their fight is ongoing.  

I get it. People think it's a violation of their rights to wear a mask. However, I feel that if I don't wear a mask, its violating the rights of my twins to LIVE. It's violating the rights of others who also wear a mask and want to LIVE.  #live

See, whenever our twins are at the hospital (even before Pandemic),#dcotors  always gowned up. ALWAYS Head to toe. And, it kept our twins safe. Safe from those tiny microorganisms that could kill them. I know that, because I witnessed it first hand. So if my precious twins' lives were saved by a #mask , then I will proudly wear a mask, for them and everyone else.

We have been under #quarantine for months. It's nothing new to us. Its familiar ground. They gone through grueling #Chemotherapy , and their blood counts would sit at zero for weeks.  So, we would stay at home.  Now, we keep them at home to protect them from the Corona Virus.  They've been through so much already, I cannot imagine them suffering in a hospital again.  

Now, the virus has caused their treatments and appointments to be delayed or canceled.  My husband's employment has gone from 7 days a week, to virtually zero.  We are scared to bring them into a community setting.  

They are strong and they are brave.  I am proud that they are mine. @OakleyTwinsJourney
#Retinoblastoma #ChildhoodCancers #twins #Anxiety #Depression  #wearamask #RareDisease #sisters #Health #MedicallyFragile #Toddlermom #Deafness #cancerresearch #Awareness  #Safety


Insights from a chat with another medical mama tonight:

👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

More on our site at

#DownSyndrome #HLHS #HypoplasticLeftHeartSyndrome #Tracheostomy #MedicallyComplex #CongenitalHeartDefectDisease #MedicallyFragile #HeartDefects #Stroke

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What we wished you knew

What the parent of a rare and medically complex child wished you knew....
#RareDiseases #MedicallyComplex #MedicallyFragile #MedicallyComplexChild #MedicallyFragileChild
1. We will never get over the heartbreak of our child’s diagnosis. Some days are easier... but the grief never goes away.

2. We are lonely. Oh, so lonely. We hate that we don’t get invited to things anymore. Even if we can’t go to things most of the time, still invite us. We miss our friends and it’s nice to know people still want to hang out with us.

3. We are tired. Like newborn phase tired... even if our child is no longer a newborn. Please don’t complain about how your child got up twice last night... it really annoys us.

4. We appreciate help... but we will never ask for it. A simple meal, gift card, or offering to watch our other kids would mean the world to us.

5. We also experience the small things in life more fully and with more appreciation. Every moment is precious and every milestone is a miracle.

6. We feel love deeper. When your child isn’t promised tomorrow... you love more fiercely. There is so much love in every moment.

7. Our life looks hard... and it is. There is nothing easy about watching your child be poked countless times or being put to sleep and taken away to surgery. All the appointments, therapies and medications. Sometimes it’s too much and there just aren’t enough hours in a day.

8. We wish you wouldn’t say “I don’t know how you do it. I couldn’t do it if I were you.” Yes, yes you could. You love your child, so you will and can do anything for them.

9. As hard, lonely and sad as it can be.... this life is also beautiful and rewarding. We wouldn’t trade it for anything.