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#Medicallycomplex Reel by @raising.remi.on.o2 - They told us she was "fine." Then it was "just a virus." Then "maybe reflux." Then "give it time." But she still wouldn't eat. And her breathing didn
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@raising.remi.on.o2
They told us she was “fine.” Then it was “just a virus.” Then “maybe reflux.” Then “give it time.” But she still wouldn’t eat. And her breathing didn’t look right. We knew something wasn’t right — and waiting was delaying her care. So we took her back to the hospital for answers. If you’ve ever been told “everything looks normal” when you knew it wasn’t… you’re not alone. 🤍 Follow Remi’s Journey 🌈 #medicallycomplex #medicalmom #oxygenbaby #feedingaversion #specialneedsparenting
#Medicallycomplex Reel by @pallisons_journey - 3 days ago our worst fears were confirmed. My disease had progressed. I went into respiratory failure. This isn't something any of us expected. It
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@pallisons_journey
3 days ago our worst fears were confirmed. My disease had progressed. I went into respiratory failure. This isn’t something any of us expected. It happened so fast. But this is common in neuromuscular patients. We did catch it before it became a medical emergency. But it was still rough. I was immediately admitted into the PICU and started on respiratory support. We had to work to get the settings right. I stayed there for 2 days before getting to the pulmonary floor. Things didn’t slow down on the pulmonary floor. We received more equipment. A sipper vent, bipap, cough assist, shakey vest. So much stuff suddenly sprung onto us. 4 days later we got discharged. But there is so much equipment and disease changes that we have to rearrange the house to make it more suitable. We are still working on that. (We as in my family. Not me lol) When your disease progresses again it can be rough. My lung function went from 66 to 40. It’s not expected to plateau. It’s expected to just keep progressing at a steady rate. But we’ll continue to fight. #disability #wheelchair #fyp #medicallycomplex #chronicillness
#Medicallycomplex Reel by @thispinklifeilive (verified account) - Today is my daughter Lilly's 16th birthday. She was born with an extremely rare genetic disorder. She is a pretty medically complex kid and she doesn'
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@thispinklifeilive
Today is my daughter Lilly’s 16th birthday. She was born with an extremely rare genetic disorder. She is a pretty medically complex kid and she doesn’t eat by mouth. The thing is, a lot of her classmates don’t either. They use feeding tubes. So the typical cupcakes just don’t really make sense for her class. Instead of treats, I’m making goodie bags. All sensory. Pure fun. Pop it tubes. Bubbles. Slinkies. Things that feel good in your hands. Things that meet them where they actually are. Birthdays look different for us. No, there won’t be a table full of kids with frosting faces. But even without the cake there is still so much joy. I’ve learned that celebration isn’t about doing it the standard way. It’s about doing it the way that works for your people. Everyone deserves to feel included. Everyone deserves to be celebrated 🎂♥️✨
#Medicallycomplex Reel by @pallisons_journey - This might come as a huge shocker. But in my experience, Kids look because they're curious, not cruel. When you whisper "don't look," it teaches them
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@pallisons_journey
This might come as a huge shocker. But in my experience, Kids look because they’re curious, not cruel. When you whisper “don’t look,” it teaches them that disability is something embarrassing or wrong, something to be hidden instead of understood. If you shush them from asking questions, or turn their faces away from us, it makes them think that we are bad. That we shouldn’t be talked to. I’d much rather you teach them to say hi and smile, or let them ask questions. Or simply tell them, “People move, talk, and live in lots of different ways.” Teach them to be respectful. Normalize disabilities. Keep in mind, don’t let your kids just death stare at us. What I mean is it’s ok if they look and then smile and nod. But don’t just let your kids stare for ages at us. That is super uncomfortable. A simple moment of curiosity can become a moment of normalizing disability, instead of reinforcing shame. I promise it’s okay if your kids are curious. What hurts more is when kids mock us. I had a little girl come and ask a lot of questions about why I use a wheelchair. She left understanding it and realized it is just a different way to get around! Thank you to parents who continue to learn how to teach kids about disabilities. Hopefully this helps! Another side note- there’s a big difference when a kid does it vs adults. Some people don’t even like kids to stare. It’s different for everyone.personally I don’t mind it, as long as the kid is young and follows it up with a smile or wave! Keep in mind, I don’t speak for everyone. #disabilityawareness #wheelchair #inclusion fyp
#Medicallycomplex Reel by @wonders_of_wally - Hospice: Day 9 She still wants him to play 💔 #Medicallycomplex #metabolicdisorder #iwishicouldtakeyourplace #trauma #caregiversupport #raredisesep
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@wonders_of_wally
Hospice: Day 9 She still wants him to play 💔 #Medicallycomplex #metabolicdisorder #iwishicouldtakeyourplace #trauma #caregiversupport #rarediseseparenting #leighsyndrome #mitocondrialdisease #mitokid #childloss #anticipatedgrief #caregiver #infantilespasmsawareness #infantilespasms #mela #findingjoy #raisingrare #mtnd5 #13513ga #medicalmom #medicallycomplex #medicallycomplexkids #infertility #rainbowbaby
#Medicallycomplex Reel by @confessionsofararediseasemama (verified account) - Some parts of this life still hit me like a punch to the chest. I will never know what it feels like for my children to run into my arms. To feel thos
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@confessionsofararediseasemama
Some parts of this life still hit me like a punch to the chest. I will never know what it feels like for my children to run into my arms. To feel those tiny hands wrap around my neck. To hear them say “I love you, Mama.” And even though I know their love is real, even though I feel it in their eyes, their breath, their expressions, grief doesn’t disappear just because gratitude exists. Both live here. Some days, I am strong and grounded in the beauty of our life. And some days, the weight of what we don’t get to experience knocks the wind out of me. If you’re in that place too — if the “never” moments sneak up on you, if you cry for memories you’ll never have and milestones you never asked to lose, you’re not alone. This love is deep. This pain is real. And you are doing the impossible every single day. For every medically complex + disability parent carrying grief and love in the same heart: I see you.🤍 Follow for more honest rare-mama moments, not just the shiny ones.✨ Learn more about our kids and their battle with ASMD—> SAVEROMANANDSTELLA.COM #rarediseaseparenting #medicallycomplexparenting #medicalmama #caregiverparent #lifelimitingdiagnosis #asmdawareness #rawtruth
#Medicallycomplex Reel by @kbthespecialneedsmom - At this moment, I knew they were ready to put her out of the hospital. And yes she ripped the leads off 😮‍💨 (She crashed right after this video)
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@kbthespecialneedsmom
At this moment, I knew they were ready to put her out of the hospital. And yes she ripped the leads off 😮‍💨 (She crashed right after this video) #reels #specialneeds #medicallycomplex #caregiver
#Medicallycomplex Reel by @highlight_happiness - Satcher was diagnosed in July 2021 and placed with hospice after a major neurological regression in October 2021. He was placed on the rush make-a-wi
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@highlight_happiness
Satcher was diagnosed in July 2021 and placed with hospice after a major neurological regression in October 2021. He was placed on the rush make-a-wish list. We were devastated. We switched our approach to all natural and holistic. He graduated from hospice In December 2022! Today we found out he may no longer qualify as Medically Complex in our home state! #takethatleighsyndrome #leighsyndromesucks #hospicegraduate #miracleboy
#Medicallycomplex Reel by @thispinklifeilive (verified account) - When she was little I used to dread going to sleep because I knew exactly how the night would end. Parents of medically complex, special needs kids
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@thispinklifeilive
When she was little I used to dread going to sleep because I knew exactly how the night would end. Parents of medically complex, special needs kids or autistic children know this kind of exhaustion. Not the “I had a bad night” kind. The decades of broken sleep kind. For a long time I fought it. I kept wishing life looked different. I thought I could will it away. Over the last 16 years I have learned something much from my daughter Lilly. Here’s the truth about survival. You can spend all of your precious energy fighting reality or you can just figure out how to live inside it. 💘
#Medicallycomplex Reel by @ourlittlestjourney (verified account) - How do I explain, I often wonder. Please read with compassion - When *Paloma* was diagnosed with Pallister-Killian mosaic Syndrome at 1 month old, we
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@ourlittlestjourney
How do I explain, I often wonder. Please read with compassion - When *Paloma* was diagnosed with Pallister-Killian mosaic Syndrome at 1 month old, we were overwhelmed with what the future may hold for her. May hold for us. Fear, uncertainty of the days to follow. A broken string of words in my memory from the geneticist in the NICU room- A duplication of the short arm of her 12th chromosome. A known syndrome. Extremely rare. One of less than 500 worldwide. Come to find out later on, She is one in 15.4 million. Our precious, little ‘dove and light’ (paloma lucia) In those earlier days of her diagnosis, we found ourselves in a blur of tears Strewn about a new and foreign world of The medically complex. We grasped for guidance, But it was minuscule We needed her care team to see her intrinsic value and worth - To believe with us, To fight for us. To advocate for our baby girl. One thing we know for certain, Loving her is the easiest part. Even as we continue to find ourselves on this journey of care. We have found, and continue to find, an incredible care team that has believed with and fought for our little joyful warrior. She is nothing short of a gift and absolute joy to us. Her personhood reflects the Imago Dei in ways I’ve never experienced until now. But if you’re here, and you’re journeying with us, you know that our fight for care is ongoing. Today, Monday 12/4 is PKS Awareness Day. We pray that you will continue to believe with us as we choose to walk (or maybe stumble around) in faith loving our precious girl forward. 12/4 is a great day to wear Red + Black and support those who have PKS. We’re thankful that you’re here with us 🤍 *taken and edited from @theolsonupdate* disability parenting, homie with an extra chromie
#Medicallycomplex Reel by @my.resilient.heart - 🍁🚑 Medical motherhood is more than hospital stays It's learning to: ✔️ Pack an emergency bag in minutes ✔️ Read lab results before the doctor explai
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@my.resilient.heart
🍁🚑 Medical motherhood is more than hospital stays It’s learning to: ✔️ Pack an emergency bag in minutes ✔️ Read lab results before the doctor explains ✔️ Spot the difference between “just a virus” and something serious ✔️ Create normal moments in an un-normal life If you’re here because you get this, you’re not alone. 💛 👉 Add your own “medical motherhood is…” in the comments so another mom feels seen today. Follow @my.resilient.heart I share our medically complex & special needs journey, plus practical ways I create inner peace while living in hospital hallways. #MedicalMotherhood #SpecialNeedsParenting #RareDiseaseMom #MedicalMoms #HospitalLife #ChronicIllnessMom #SpecialNeedsCommunity
#Medicallycomplex Reel by @nicu_experience - There is an eerie silence that comes over your mind for a moment when you are told you are going to deliver your baby early. Then, the shock set in
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@nicu_experience
There is an eerie silence that comes over your mind for a moment when you are told you are going to deliver your baby early. Then, the shock set in and the noise returns, “I’m only 24 weeks, how is this happening?” After my son was born, there were about 30 minutes where I didn’t know where he was. The neonatologists were saving his life. I was still in the OR myself, and my husband was asked to leave the OR. I was terrified. But, I promised Jack at that moment that I would never give up on him, no matter what happened. For the next 7 months, I held my breath. Never getting “too excited” about anything. Always preparing myself internally for heartbreak. If I’m honest, I still catch myself holding my breath sometimes. When discharge finally came, it truly felt unreal. Now, we are officially 2 years outh from discharge, and my son is by our side every day. The moments of joy and love I feel now and are amplified immensely because of where we started and what we experienced. There are still moments of eerie silence as we navigate life post NICU with a medically complex, micro preemie. But now those moments are met with a smile and a hug from my miracle son. ✨✨✨ #nicu #nicumom #nicudad #nicubaby #micropreemie #micropreemiemom #micropreemiestrong #emergencycsection #gtubebaby #birthtrauma #prematurityawarenessmonth #prematurityawareness #medicalmom

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