Goals of care conversations acknowledge that you are the expert on your child. Having these conversations with your child's providers can help you feel more in control when things feel uncertain. Here are 8 things to know about goals of care conversations. Link to download and print a one-pager of this guide available at the link in our bio! - #CourageousStories #PalliativeCare #PedPC #RareDisease #Caregiver #MedicallyComplex #CourageousStories #GoalsofCare #CPN #RareDisease #Rare #CareAboutRare #ShowYourStripes #Raregivers #RareDiseaseParenting #RareAdvocacy #RareDiseaseFamily #RareDiseaseAwareness #CaregiverForLife #CaregiverSupport #MedicallyComplexParenting
Today's Breathing Room Girl put your records on and tell me your favorite song! Or spend some time with your loved one listening to their favorites. Even if you've heard them a thousand times ... Jacob and I just hung out in his room after school relaxing and listening to his playlist. A very normal 14yo thing to do 😊 What's your favorite jam these days? See mine and Jacob's in the comments 🎶 #breathingroom #rarebreathingroom #specialneedsparenting #autismfamily #caregiverforlife #LGSlife #caregiversupport
Goodness I love these women. New episode with Sophia Zilber and Frances Muenzer Pimentel where we discuss an exciting collaboration between the Cure Mito Foundation and Hope for PDCD Foundation. They're uniting forces on a shared patient registry for Leigh Syndrome and Pyruvate Dehydrogenase Complex Deficiency (PDCD), hosted on the Sanford CoRDS platform. Discover how this strategic collaboration aims to enhance research and improve patient outcomes. Check the show notes for the new Registry Toolkit! This essential resource will help patient families navigate their options and understand the benefits of different registries. Tune in to learn why participating in these registries is crucial and how they can make a monumental impact on rare disease research. Listen now to understand all your options and choose the best path for your family's needs. Links in bio! #RareDisease #PatientRegistry #LeighSyndrome #PDCD #SanfordCoRDS #RareDiseaseResearch #PatientAdvocacy #CureMito #HopeForPDCD #RareMama #AdvocateLikeAMother #CureMito #mitochondrialdisease #PatientAdvocacy #PodcastForACause #caregiver #Caregiver4Life #caregiverforlife #WeAreStrongerTogether #ChildLoss #ketodiet #
Read Parent Champion Aubrey's reflection on loving and losing her son D'Aubrey. Link in bio! - #CourageousStories #PalliativeCare #PedPC #RareDisease #Caregiver #MedicallyComplex #CourageousStories #Blog #WritingAsHealing #InTheRoom #Video #CPN #NeuroJourney #RareDisease #Rare #CareAboutRare #ShowYourStripes #Raregivers #RareDiseaseParenting #RareAdvocacy #RareDiseaseFamily #RareDiseaseAwareness #Grief #Bereavement #Ritual #ChildLoss #CaregiverForLife #CaregiverSupport #MedicallyComplexParenting
Congratulations Danika Lee Lewis you are the Winner of our Eminence Mother’s Day Gift Box! ☺️👏🌺 Please send a message to arrange for delivery or stop by our location for pick up! Thank you everyone! We wish you all a Happy Mother’s Day! Keep on eye out we might be giving away a free facial very soon! 😉💕 . #boujeebohomarket #boujeebohofacialroom #lovetoourmothers #caregiverforlife #selfcare #eminenceorganics
Today's Rare Breathing Room What showers rained on you last month? What are you looking forward to blooming this month? Take some time to breathe, reflect, and look ahead. Share your ☔ or 🏵️ in the comments "April rain is not a cause to complain; it's busy preparing the terrain for spring to sustain." #breathingroom #rarebreathingroom #caregiverforlife #caregiversupport #raredisease #specialneedsparenting #specialneedsfamily
Does this sound like you? ...Then you're not alone. Follow me to find yourself again. 💜🦓💚 My name is Annie, working mom to 14yo Jacob who has a rare epilepsy called LGS, 9yo Caleb who loves soccer and video games, and my husband Matt. I've worked hard to recover from burnout (career and caregiver) but I've noticed myself slipping back into my old ways. Sometimes you get inspired just by seeing someone else do the thing. So that's what I hope this account is for you - inspiration to find some space for you in the midst of this caregiver life. #specialneedsfamily #caregiverforlife #caregiversupport #breathingroom #caregiverlife
This guy got out of the van and walked up the two steps and inside the house ALL BY HIMSELF! 👏🏼UNASSISTED👏🏼 I love it when he surprises us with his ABILITY! 💜💚💜💚💜💚 #presumecompetence #disabilityparenting #specialneedsparenting #LGSlife #caregiverforlife #caregiver #caregiverlife
🔥🔥 5 YEARS OF FIRES 🔥🔥 March 25, 2019 is a day that will forever be burned in our hearts. The day we woke up and our lives changed forever. 💔 I could sit here and show you our heartbreaking journey, how we spent 120 days in the hospital with that initial admission 5 years ago. How the drs tried to prepare us for the worst. How Jems entered the hospital as a walking, talking, normal child and left a completely different way. 😔 Instead, today I’m going to talk about how amazing she is doing considering all the curveballs life has thrown at her! And a huge part of that is her school and the community of teachers, therapists, aides and just a whole bunch of amazing people who surround Jemma with love and support everyday at school! 🩷 Please consider making a purchase of Sipology tea for the fundraiser that I’m doing for Jemma’s school. These kiddos are so special and deserve to have fun activities as a part of their educational experience. 🙏🏻 Today is the last day of the fundraiser as I wanted to go out with a BANG on Jemma’s FIRESVERSARY 🔥🔥🔥🔥🔥 Please order a $15 bag of tea for yourself or your gramma or aunt or anyone who you know loves tea! Only $3 to ship, that’s an $18 commitment to such a worthy cause that is Emily Follensbee School ❤️💛💚🩵 Link to shop in my bio ⬆️ (This fundraiser is open to 🇨🇦 peeps only) Thank you all so much for your support!! 😘😘😘😘😘 #givingbacktothecommunity #specialneedskids #caregiverforlife #medicalmomma #doitforthekids
I am so deeply honored to have been included in this gorgeous anthology. 💜💜💜💜💜🌟🌟🌟🌟🌟🌟 "They walk among us, unseen warriors in the trenches of love. Mothers, the invisible backbone of families touched by disability, chronic illness, and unique needs. Their days are woven with exhaustion, isolation, and an unshakeable love that defies definition. This is their story. Becoming Brave Together, the powerful debut from We Are Brave Together, cracks open the hidden world of these extraordinary women. It’s a tapestry woven from their raw, honest experiences - the heartbreak, the resilience, and the unwavering dedication that fuels their journey." Coming to you MAY 1st, 2024!!!! Huge thank you to @jesspatay @wearebravetogether for putting this out into the world. #raredisease #CTNNB1 #advocatelikeamother #podcastforacause #Rarediseasepodcast #genetictesting #raremama #raremomera #caregiversupport #caregiverforlife #caregiver4life #tellyourstory #specialneedsmom #specialneedaparenting #specialneedspodcast #youlookgoodinthosegenes
SHE’S OUT OF THE OR AND DOING GREAT!!!! 🩷🩷🩷🩷🩷🩷🩷🩷🩷 Thank you for all your prayers 🙏🏻 Jemma did not have adhesions afterall! Her small bowel got looped around her ileostomy on the inside and caused a constriction in her bowel that blocked anything from moving through it. She’s all fixed now and in mommas arms again 💞💞💞💞💞💞💞 #caregiverforlife #medicalmomma #sweetgirl #postop #bowelobstruction
What a 24hrs it’s been 🫣🥴 So Jems got her IVAD yesterday but came out of the OR just throwing up non-stop. But to be fair she had been throwing up since we got here last week … that’s why we came into emergency. Well turns out she has a bowel obstruction 🫣 … so back to the OR she had to go 😩 As I write this right now, Jems is in the OR getting her adhesions removed in her bowel. I PRAY that this will fix whatever these feeding issues that she’s been having for the last almost 2 years!!! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻 Pray for us, pray for Jems, pray that this makes her better and able to eat and we can finally get back on the road to recovery and someday walking again. 🙏🏻🩷🩷🩷 #medicalmomlife #specialneedsmom #caregiverforlife #ibdawareness #bowelobstruction #sickkids #feedingtube #colitis
A nurse told me today that I am suffering from decision fatigue. 😔 I had never heard of this term so I googled it….. Decision fatigue is “the idea that after making many decisions, your ability to make more and more decisions over the course of a day becomes worse,” said Dr. MacLean, a psychiatrist. “The more decisions you have to make, the more fatigue you develop and the more difficult it can become.” Oh man 🎯🎯🎯🎯🎯😩😩😩😩 Today I had to make yet another decision for Jemma’s little body. We decided to have another IVAD port inserted into Jemma’s vein above her heart so that we can feed her IV nutrition, as well as administer medications and draw blood. Jemma has had one previously but it got infected and we had to remove it in 2022. Needless to say, the decision to put in another one was not one that we took lightly. 😣 Right now we still don’t know why Jemma’s gut will not let us feed her, we have no answers and she’s withering away day by day and is beginning to suffer from malnutritionment. The most basic instinct of a mother is to protect and feed your child, and I’m struggling so hard with this. I just want to feed her 😩😩😩😩😩!!! In this day and age of body autonomy, I hate making decisions on behalf of Jemma… I really really hate it!!! I wish so much that her body would heal and that we could feed her and give her nourishment so she could get strong and healthy!! Jemma has another 5 day intensive coming up on the 25th and I’m scared that she’s going to be too weak to go through with it. 😭 I really really hate this so much! I’m just exhausted and so tired of being here in the hospital with a sick kid. Please pray for us 🙏🏻 for Jems 🙏🏻 for me to give me strength with all of this. #medicalmomlife #specialneedsmom #caregiverforlife #caregiving #medicalmomma #ibdawareness #feedingtube #feedintolerance #gtubeawareness #gjtube
I’m so sorry! This update is long overdue! 🫣🤷🏼♀️ Little Jemma Sparkle has been taking me on a crazy ride over the last week!!!! 😵💫❤️🩹 So after A LOT of investigating this week … some initial seizure upticks because we had to mess with her seizure meds a bit .. which caused Jemma to need some extra oxygen at times (how cute is this little bunny nose O2 mask 😍🐰) …. Jems is finally eating thru her new feeding tube again!! 🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻 They have chalked this up to a really nasty gastroenteritis bug which made Jemma unable to handle anything going into her stomach or bowels (even her meds 🫣) and she needed fluid replacement in a major way! 💧 We did end up having to put a central line in to give her IV nutrition and to draw blood from because look at her poor little bruised up hand from all the bloodwork pokes everyday 😢 💉 🩸 Hopefully home in the next few days!! #medicalmomlife #specialneedsmom #caregiverforlife #medicalmomma #specialneedsparenting #ibdwarrior #epilepsywarrior
This International Women's Day, we dedicate our latest episode to the superheroes among us: the mothers turned full-time caregivers for their medically complex children. Their stories of resilience, love, and the fight for justice illuminate the path toward a more inclusive and supportive society. Navigating the complex healthcare and government systems to secure a waiver for your child is a feat in itself. However, the real challenge often begins afterwards: accessing the very support you fought so hard to obtain. Despite the funds being earmarked and available, they remain frustratingly out of reach, inadvertently benefiting governmental budgets rather than the children in need. The stark reality is that finding caregivers is a daunting task. The high needs of our children coupled with insufficient compensation dissuade potential caregivers, leaving families without the necessary support.The process to certify a caregiver for our children is fraught with obstacles, sometimes taking up to a year to navigate. This isn't just an oversight; it's a systemic barrier designed to wear us down, expecting us to retreat in defeat. However, this crisis cannot continue unaddressed. Families are enduring undue stress, facing isolation, job loss, and mounting pressures at home.We stand at a critical juncture where action is imperative. It's time to dismantle these barriers and reform a system that has long failed to support the families it was designed to assist. Our children deserve better. Our families deserve better. Together, we must strive for a solution to this crisis, ensuring every child receives the care and support they need. Shout out to my dads - I know you're right here with us. Listen: https://effieparks.com/podcast/episode-220-a-call-for-action #raredisease #advocatelikeamother #rarediseasemom #Rarediseasepodcast #podcastforacause #ctnnb1 #epilepsy #caregiversupport #caregivers #caregiverforlife #caregiver4life #disabilitylife #InternationalWomensDay2024 #specialneedsmom #speciqlneedspodcast #dda
It’s crazy how life can be going so frikken amazing … and then suddenly everything just takes a nosedive. 🤦🏼♀️ Yesterday, Jemma nosedived herslf right into the back of an ambulance at 4am! 😭🚑 So here was are … BACK in the hospital 😭 … the last place I wanted to be cuz she was doing so great with her new feeding tube! 🤷🏼♀️😫 It appears she has an infection somewhere - we’re still waiting for tests to come back to tell us where and if it’s viral or bacterial. 😵💫 In the meantime, she’s on a whopping dose of antibiotics plus hydromorph because of the pain moslt likely due to infection induced pancreatitis. Hopefully we won’t be here for long, because i really don’t want her to miss her 5 day intensive at @centrefordevelopment at the end of the month! 🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻 #medicalmomlife #caregiving #SpecialNeedsParenting #specialneedsmom #caregiverforlife
I've been deeply immersed in a myriad of tasks lately, but I'm eager to spread the word about an incredible book that's currently available for pre-order across various platforms! Pre-ordering plays a crucial role in amplifying the visibility of the book. This is the book you've always wished for at the start of your journey, and it continues to be an invaluable guide every step of the way.Please visit the page tagged in this post and follow the link in the bio to pre-order your copy!Congratulations to @hellokelleycoleman on achieving this significant milestone! #raredisease #undiagnosed #disability #caregiversupport #caregiverforlife #tellyourstory #advocatelikeamother
Happy Rare Disease Day! Swipe left for some stats, fun facts and what you can do to support the rare disease community. We celebrate on the rarest day of the year - February 29th - but every day is worth celebrating with our precious kiddos. So grateful for the rare disease community and those in our local tribe that love and support us in our day to day life. What's something you learned about a rare disease today? . . . . #rarebreathingroom #caregiver #caregiversupport #careforthecaregiver #raredisease #raremama #raregiver #specialneedsparenting #specialneedsfamily #medicalmama #advocatelikeamother #dadvocate #lennoxgastautsyndrome #LGSlife #LGSlove #rarediseaseday #caregiverforlife
GUESS WHOS GOING HOME TOMORROW!!!!?????? 🎉🎉🎉🎉🎉 #medicalmomlife #specialneedsmum #caregiving #caregiverforlife #specialneedsmom #werebustingout
To all caregivers, CNAs, LVNs, RNs 🥂👏🙇♀️ I am exhausted, I don't know how y'all do it. And we're just into his 2nd year. #trisomy21 #downsyndrome #gtube #avsd #pulomaryhypertension #asthma #caregiverforlife
This is only the first half of the book 📘 I honestly can't even express the depths of how special this book is. Buy it now. Thank you @feinjessica for your absolute best work yet. Thank you for sharing Dalia with us always 🌼 Which one of these quotes speaks to your soul? #raredisease #advocatelikeamother #merrf #grief #childloss #mitochondrialdisease #genetictesting #caregiverforlife #caregiver4life #medicalmom #medicallycomplex #trachbaby #feedingtubeawarenessweek #rarediseaseday #Rarediseasepodcast #specialneedsmom #specialneedspodcast #youlookgoodinthosegenes #
One rad rare mama made the most incredibly fun resource and she's just getting started! (Well, she's been working her butt off for a long time but it's out) It's called, 'I Did It Kids" inspired by sweet little Colbie who lives with @kif1a One of the goals of this amazing endeavor is to have our disabled kids represented in music and imagery 🤌 Go find their YouTube channel and head to their website and join the mailing list to keep up. I just know this is going to be on mainstream television someday @disorderrarediseasefilms or even its own @netflix show! Disability is Diversity #raredisease #raremama #raremomera #seizuressuck #epilepsywarrior #advocatelikeamother #rarediseasecartoon #caregiverforlife #caregiver #kidswithdisabilities #rarediseaseday #ididitkids #youlookgoodinthosegenes @ididitkids @careforcolbie
My friend @melanie.dimmitt , author of the book, "Special" and I had a wonderful chat and I hope you enjoy the read. 🚨Warning: lots of unpopular opinions I share in this blog... In a world where everyone seems to agree, or feels silenced if they do not, I'm here to add a bit of sass with my perspective. After all, if we all thought the same, we'd never learn anything new. We are caregivers for life and I believe we need a giant re-frame era to sustain us in a positive way. So, buckle up and get ready for a ride through my not-so-conventional thoughts. Unpopular? Maybe. Important? I think so. Photography by @dandelions_and_dirt @hibihealth A huge thank you for highlighting the stories of families like mine 💕 go check out how they're helping families. Link to Blog: https://hibi.health/discover/effie-parks-doesnt-mind-being-called-strong #raredisease #advocatelikeamother #ctnnb1 #thespecialbook #Rarediseasepodcast #hibihealth #hibi #caregiverforlife #raremomera #mentwlhealth #emotionalwellbeing #specialneedsmom #specialneedspodcast #genetictesting #caregiveraupport #findyoirpeople #nontoxicpositivity #youlookgoodinthosegenes #OUAGT #onceuponagenetherapy
🌟 GIVEAWAY TIME! 🌟 I'm super excited to announce that I'm giving away one of my exclusive "Rare Mom Era" sweatshirts to one of my beautiful followers! This unique piece is not just a sweatshirt, it's a community of other moms who 'get it' and need a little lift. Here's how you can enter to win: 1️⃣ Follow Me: Make sure you're following @onceuponagene.podcast for a chance to win this amazing sweatshirt. 2️⃣ Like This Post: Show some love by liking this giveaway post. 3️⃣ Tag Friends: Tag one friend per comment below. Each tag is an entry, so more tags mean more chances to win! 🔥 Bonus Entry - Share this post in your story and tag me for an extra chance to win! 📅 The winner will be randomly selected and announced here on 12/15/23 Make sure to enter before then! Good luck to everyone! Can't wait to see who will be rocking this "Rare Mom Era" sweatshirt next! 😊 💓Please subscribe to the podcast and find your people. #raredisease #rarediseasemom #raremama #advocatelikeamother #medicalmom #specialneedsmom #rarediseasepodcast #specialneedspodcast #caregiverforlife #caregiverlife #rarediseaseawareness #raremomera
This episode 💓💓💓💓 I sit down with two amazing rare moms, Emily and Katie. We're talking about something really close to our hearts: the decision to have more kids after your first child has a rare disease. These moms share everything – from the rollercoaster of emotions during their second pregnancies to the tough questions about joy, fear, and hoping for a 'typical' experience. They get real about the guilt, the love, and everything in between. Plus, they've got some solid advice for anyone thinking about growing their family in the face of these challenges. It's a conversation filled with honesty, support, and a lot of heart. Can't wait for you to join us! Like the podcast? Please share & SUBSCRIBE ✅✅ Rate & review on 🍎 podcast #rarediseaspodcast #raredisease #ctnnb1 #desh #desantoshinawisyndrome #neurodevelopmentaldisorders #genetictesting #familyplanning #grief #raremama #advocatelikeamother #caregiverforlife #caregiverlife #epilepsyawarenessmonth #youlookgoodinthosegenes
Today, I'm feeling so grateful as I have a loving young girl here helping me with, Ford. I think about the strength and courage of those caring for loved ones with rare diseases or facing their own health challenges. In this season of giving, I wanted to share something close to my heart - a simple, yet impactful way to offer support to fellow rare disease families like mine. I've created a graphic titled "Hmm, How Can I Help?" It's a guide filled with genuine, easy-to-do actions that fit your lifestyle and resources, aimed at easing the journey of rare disease caregivers and patients. This is about helping without the added pressure of them having to ask - or putting the burden back on them when you ask, "what can I do to help" or "let me know what I can do." And for my friends around the globe, friends helped me get translated into Spanish, Portuguese, French, and German. If you or someone you know would benefit from this, please reach out. Let's spread love and support this Thanksgiving. #rarediseaspodcast #raredisease #advocatelikeamother #caregiverforlife #caregiver #chroniccompassion #specialneedapodcast #specialneedsmom #grief #griefandjoy #momsofinstagram #youlookgoodinthosegenes
I am so excited to chat with this phenomenal team – these three dudes are the epitome of genuine and wise. They've been my rock through some tough chapters (even if they didn't know it- that's the magic of podcasting), and I'm beyond grateful for their friendship. We're diving into a crucial conversation - the importance of amplifying the voices of patients and caregivers. Our children with neurodevelopmental disorders often can't speak or articulate their experiences, and as caregivers, we're their voice, their advocate, navigating every facet of their lives indefinitely. It's essential to understand and value both perspectives. Plus, we'll touch on the nuances of the term 'special needs' – a quick yet meaningful dialogue you won't want to miss. #rarediseaspodcast #raredisease #menkes #friedrichsataxia #curefa #ctnnb1 #specialneeds #disabilityisdiversity #advocatelikeamother #nonverbal #caregiverforlife #caregiver #podcastersofinstagram #podcastforacause #medicallycomplex #medicallyfragile #medicalparenting #specialneedspodcast #youlookgoodinthosegenes
🎙️ New Episode Alert on Once Upon a Gene 🌟 Meet @in_his_owen_time LindseyTopping-Schuetz, a dedicated mother to Owen, a gorgeous redheaded little seven-year-old with Cri-du-chat syndrome, also known as 5p-. Lindsey's journey into the world of rare diseases began unexpectedly and has led her down the path of policy advocacy, fighting for the rights and support needed in the realms of rare disease, disability, and palliative care. 🔊 In this episode, Lindsey shares the challenges and triumphs of her journey, starting from the surprising discoveries during her pregnancy to the steep learning curve in navigating resources and laws. Discover her powerful story of transformation from a concerned parent to a fierce advocate, and get inspired by her practical tips on how anyone can start advocating for change in government policy. 💡 Episode Highlights: Lindsey's personal story with Owen and their entry into the rare disease community. The pivotal moments that steered Lindsey towards policy advocacy. Actionable advice for parents and individuals wanting to make a difference through policy. Join us in this heartfelt and enlightening conversation with Lindsey, and learn how one person's passion can ignite change in a community. 👉 Tune & SUBSCRIBE to 'Once Upon a Gene' and be part of this inspiring journey. Let's raise awareness and support for those navigating the challenges of rare diseases. #RaReDisease #rarediseasepodcast #advocatelikeamother #specialneedsmom #specialneedspodcast #genetictesting #RareDiseaseAdvocacy #PolicyForChange #CriDuChatSyndrome #AdvocacyInAction #ParentingJourney #Raremama #caregiverforlife #palliativecare #pediatricpalliativecare #neurojourney #courageousparentsnetwork #youlookgoodinthosegenes
Find out what you like doing best, master your craft, and then find someone to pay you to do it! It’s true, love what you do and you will never work a day in your life. #mypurpose #lovebeinganursepractitioner #peoplehelpingpeople #blessed #caregiverforlife #lovemyteam
𝗛𝗮𝘃𝗲 𝗛𝗼𝗺𝗲 𝗖𝗮𝗿𝗲 𝗡𝗲𝗲𝗱𝘀 𝗡𝗼𝘄? 𝗥𝗲𝗰𝗲𝗶𝘃𝗲 𝗮 𝗰𝗼𝗺𝗽𝗹𝗶𝗺𝗲𝗻𝘁𝗮𝗿𝘆 𝗵𝗼𝗺𝗲 𝗰𝗮𝗿𝗲 𝗮𝘀𝘀𝗲𝘀𝘀𝗺𝗲𝗻𝘁 𝘁𝗼𝗱𝗮𝘆! 𝗖𝗮𝗹𝗹 𝟬𝟮𝟬𝟴 𝟬𝟰𝟵 𝟰𝟱𝟬𝟬 𝗖𝗵𝗼𝗼𝘀𝗲 𝘁𝗵𝗲 𝘀𝗲𝗿𝘃𝗶𝗰𝗲𝘀 𝘁𝗵𝗮𝘁 𝘆𝗼𝘂𝗿 𝗳𝗮𝗺𝗶𝗹𝘆 𝗺𝗲𝗺𝗯𝗲𝗿 𝗻𝗲𝗲𝗱𝘀! * 𝗣𝗲𝗿𝘀𝗼𝗻𝗮𝗹 𝗖𝗮𝗿𝗲 * 𝗟𝗶𝘃𝗲 𝗶𝗻 𝗰𝗮𝗿𝗲 * 𝗟𝗶𝗴𝗵𝘁 𝗗𝗼𝗺𝗲𝘀𝘁𝗶𝗰 𝗗𝘂𝘁𝗶𝗲𝘀 *𝗖𝗼𝗺𝗽𝗮𝗻𝗶𝗼𝗻𝘀𝗵𝗶𝗽 *𝗔𝘀𝘀𝗶𝘀𝘁𝗮𝗻𝗰𝗲 𝘄𝗶𝘁𝗵 𝗦𝗵𝗼𝗽𝗽𝗶𝗻𝗴 *𝗔𝘁𝘁𝗲𝗻𝗱𝗶𝗻𝗴 𝗔𝗽𝗽𝗼𝗶𝗻𝘁𝗺𝗲𝗻𝘁𝘀 *𝗦𝗼𝗰𝗶𝗮𝗹 𝗜𝗻𝘁𝗲𝗿𝗮𝗰𝘁𝗶𝗼𝗻 𝗶𝗻 𝘁𝗵𝗲 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 #companioncare #caregiver #eldercare #inhomecare #aginggracefully #loveandcare #agedcare #caretaker #seniorliving #familycare #seniorsupport #advocacy #agingathome #dignityandrespect #caregivingcommunity #carefuliving #caregiverforlife
A huge congratulations to my dear friend @parvathyramankrishnan on this much deserved award and recognition. Parvathy is such an incredible person, mother and advocate and the world is a better place because she's in it. Follow her and learn her story #cmmrd #bardetbiedlsyndrome #advocatelikeamother #healthunion #CaregiverForLife #caregiver #pediatriccancer #grief #childloss #raremama
This week's Rare Collection Storytelling episode is in honor of the dad's for father's day. These dadvocates are some of my most favorite in the biz Theme: "Amidst The Storm" Jess tells her story about her dad, @edgabler.akabestbapa @curesyngap1 grandpa. Ed, big hugs to you my friend and happy Father's day. @mrs.phillijt tells her story about her amazing twin dad husband, Justin. One of their kiddos has #warsawbreakagesyndrome Technically I haven't met this dadvocate but I'm obsessed with his wife and his epic mullet. @mlafren mom to @sophieshopefoundation who lives with #gsd1b tells a story about @jamasl Jamas, big fat love to you and your beautiful family. And last but certainly not least, @mary_c_esteves fellow #@ctnnb1connectcure mom tells a story about the extra special @naovouporai Bruno. Bruno, wow. Hard to express my love for you and your family. Thanks for all you do and for being my hilarious and sarcastic busom buddy. (Do Portuguese people even know Anne of Green Gables?) Enjoy the episode and hug those dadvocates in your life. Please share this episodes and leave a rating and review on apple podcasts Listen on any app or click here: https://effieparks.com/podcast/episode-191-a-fathers-day-special-amidst-the-storm #raredisease #rarediseasepodcast #raremama #raredad #Dadvocate #advocatelikeamother #neurodevelopmentaldisorders #genetictesting #rwrediseasestorytelling #ctnnb1 #syngap #specialneedsdad #specialneedspodcast #epilepsywarrior #CaregiverForLife
Hello my friends! June and July we celebrate 2 very important days. Ford's birthday and Ctnnb1 Connect & Cure Awareness day. With your help, we survive and thrive as a family in countless ways that I will forever be grateful for and never forget for as long as I live. Did you know that there is NO wizard behind the curtain, no government, no medical/research/pharmaceutical companies coming in to help our children who have rare diseases? No doctors we see know anything about the disease until WE educate them. We learn to speak a language that has nothing to do with our former lives. We are regular people who used to balayage your hair, serve your breakfast and clean your house. 💇🧑🍳🧚 Truth. Those living with ultra rare diseases basically don't exist unless regular ol' families like ours literally hunts down the special brains to help us. We raise money and fund research to understand our disease and help to develop treatments to better their lives in the most meaningful way. Nobody is asking you at the grocery store if you want to donate a dollar to Ford Parks and the disease that he suffers from. (Not yet anyway 😉) We can't do this alone. Will you help us? 💪 If you are in the Seattle area, would you like to help by putting a sign in your yard or neighborhood? DM me and come pick up a sign- if I'm here you're also gonna get a hug and a high five. ✋ Will you share this fundraiser? 🎗️ Would love to see the sign in the yards of my friends around the country!! 🌎🌎🌎 Do you have a metal stake you can put the sleeve on? #CTNNB1 #RareDisease #CaregiverForLife #BuiltFordTough https://curectnnb1.kindful.com/?campaign=1252646 #rarediseasepodcast #kidswirhdisabilities #advocatelikeamother #genetictesting #seizuredisorder #movementdisorder #dystonia #hypotonia #gtube #specialneedspodcast #careaboutrare #disabledandcute #medicalmom #raremama
Real Self Care Mark yourself safe 🪥🦷☑️ #selfcareisahabit #selfcareisboring #selfcareisfree #caregiver #caregivers #caregiverforlife #ctnnb1 #rarediseasepodcast #specialneedspodcast #rarediseaseadvocate #advocatelikeamother #medicalmom #raremama #dadvocate #youlookgoodinthosegenes
Thinking of dear Lucas and his family today. Every sunbeam from you shines on little dude. @disorderrarediseasefilms Spoke in front of thousands of people today at @iambiotech That's one rad #Dadvocate https://effieparks.com/podcast/lucasdefabio #raredisease #menkes #thedisorderchannel #grief #childloss #copperdeficiency #careaboutrare #caregiverforlife #youlookgoodinthosegenes
Have you watched the show, "Jury Duty" ?? It got me thinking.... are we actors? Are you ever just walking around in normal land around normal people and think, I feel so completely different than they do and that they have no freaking clue; What you do in a day What your child goes through in a day What calls you had to make today What appointments you went to today What fight you had to have today What broke you today What scientists you had a call with What genetic therapy you studied What reoccurring symptom you googled What you had to beg for Where you couldn't take your child What you're grieving Etc, etc, etc. What did you do today that you just shake your head about, laugh about and pat yourself on the back for?? https://effieparks.com/podcast/effisode-071-are-we-the-actors #raredisease #RareMamas #rarediseaseadvocate #rarediseasepodcast #medicalmom #caregiverforlife #advocatelikeamother #CTNNB1 #specialneedspodcast #cerebralpalsypodcast #genetictesting #newbornscreening #raredisorder
I have been offline for a few days. Putting my attention where it needs to be right now. Dennis finally got back out of the hospital. There are always lots of things to get done at that point. Follow ups, care set up while shortening my work days. Any supplies that will be needed for care. And mostly just him and me time. To focus on each other. To reconnect and really listen to each other. He is the love of my life. My ride or die. My partner in life. The things I do, I do for him. Take each moment and cherish it. The good times and even the speed bumps. They are all moments to be remembered. #caregiverforlife #kidneydiseasesucks #whattruelovelookslike #lifeisntalwayspretty
Isn’t of funny how something as mundane as a mirror can bring back such strong memories. This is the mirror that sat on mom’s floor and when she was sitting up she looked through it to see her TV and lifeline to the outside world. This mirror saw national events, More hallmark movies than I can count, Game shows, football games and anything we ran into her room and said “look Nanu” look what’s happening. It was how she saw the world good and bad, And countless times of me adjusting it so she could see her TV, because well I also had a habit of hitting it every time I went in there lol. We laughed a lot about that. So today I will hang it up where I can see through it and remember the way that something so mundane brought her so much happiness and that we always found a way to make something positive ❤️❤️ #grief #mirror #nanulifelessons #griefjourny #lifewithoutmom #postcaregiver #caregiver #caregiverforlife
#saylorgabe #goodtrouble No one threatens a disabled person on my block !!! #caregiverforlife
Making this post simply to tell you Emmy TOOK INDEPENDENT steps the last few days!!! I will add, there is still a little ways to fully walking but man or man she’s so close! I let her go last night, she was just standing there and started walking!!! About three steps to her brothers Ben and grab it! If we ever get a video I’ll post it for sure! #learningtowalk #epilepsy #epilepsykids #kidswithepilepsy #eef1a2 # #eef1a2epilepsy #ittakestime #developmentdelay #delayeddevelopment #myclonicseizures #atonicseizures #purpleribbon #christmas #inclusion #disability #epilepsyawareness #kidswithdisabilities #disabilitycommunity #epilepsycommunity #support #caretaker #epilepsycaregiver #caregiverforlife #mom #momlife #momofaepilepsytoddler
When you don’t even know what day it is anymore. Just trying to get through the one I’m in. #caregiverforlife #healthcareheroes #healthcareheroes #imwithcory
🎶 Just keep swimming 🎶 #raredisease #raremama #medicalmamas #medicalmamalife #raisingrare #ccm #epilepsy #raiseawareness #advocate #caregiver #chronicillness #caregiverforlife #mentalhealth #motherhood #twinmom #twins
I can't WAIT to see y'all in person! I’m excited to share that I’ll be speaking at the Global Genes Rare Patient Advocacy Summit, taking place September 12-14 in San Diego and virtually! Come join me and others from the rare disease community for a chance to connect and attend educational sessions. Check out more details and register here https://go.globalgenes.org/summit. #GGSummit22 #GGSummit #CareAboutRare #GlobalGenes #RareDisease #CTNNB1 #RareDiseasePodcast #podcastForACause #wegohealthawards #advocate #advocatelikeamother #caregiver #caregiverforlife #podcast #tellyourstory #storyteller #YouLookGoodInThoseGenes
Some days I wish I could go back in life. Not to change anything, but to feel a few things twice…🥰🥰.. I have infection in my eye so I didn’t do much.. but.. my husband cooked for the big guy & I 🥰🥰 I also received some surprise gifts ,flowers ,cards &etc.. Thanks again 😘💙… I love being a mom I give it my ALL 🙏🏾💪🏾.. and I’ll ALWAYS be that 1st💯 #autismmom #specialneedsmom #adultcaregiver #caregiverforlife I hope EVERYONE had a Blessed day. Happy Mothers Day again 😘😘💐 📸 : Kimberly Collins🤩😇
We are hiring! Join our team and help seniors and adults with medication reminders, grocery shopping, companionship, and more. Call us today at (818) 740-3680 for a phone screening. #homecarepartner #homecare #homecareservice #caregivers #careforelderly #elderlycare #seniorcare #seniorcareservice #encino #encinohomecare #tarzana #tarzanahomecare #simivalley #simivalleyhomecare #burbankhomecare #thousandoaks #shermanoaks #sanfernando #dailylivingactivities #dailylivingactivity #caregiving #respite #respitecaregiving #caregiving #respiteforcaregiver #caregiverforlife♥️ #resptecareforchild #caregiver #caregiverforlife #caregiverforlife♥️🌻🙏🏼😇
We asked the women in our office team to strike the #BreakTheBias pose! Loving the strong women empowerment from a few members in our office team! #InternationalWomensDay2022 #IWD2022 #homecare #care #caregiver #caregivers #WeLoveCare #caregiverforlife #caregiverlife
It can take time to master. But learning to Be Still is what can actually set you free. Enneagram 2s often feel the need to care for everyone else. Go go go. Help help help. It's easy to get lost in busy and forget ourselves. We can become resentful for always having to help everyone. Join the journey. Learn to go inward, be still, so you can start leading life you want, caring for others without the expense of your own happiness ❤️ #enneagram2 #caregiverforlife #empaths #empathlife #bestill #stressless #meditation101 #holisticOT
❤️What I do to set my day up for success… 1) when I get up the first thing I do is get that coffee going! I then mix a scoop of my chocolate protein powder with almond milk and add coffee and start to come alive. 2) I fill my Water jug for the first time (my water goal is minimum of 100 ounces a day) 3) I sit down and allow myself about an hour to spend time mediating in and learning how to better serve God which allows me to start the day energized (I normally get up at 5:30am so that I have this extra time with Him) 4) I take my supplements (Yes, I believe that supplements can help our health journey to fill in the gaps of what our foods no longer can provide due to soil degradation and over processing) ❤️These 4 things are non-negotiable for me. This happens EVERY SINGLE DAY! No matter what. And to be honest, even if we are traveling, I wake up early and still focus on this morning routine in order to have a productive day. No God time equals anxiety and just a cruddy day. Do you have a morning routine to set your day up for success? ⬇️Share in the comments what you do! #planforsuccessandyouwillsucceed #planforsuccessorplantofail #healthybodyhealthymindhappylife #onlinepersonaltrainerforwomen #over50fitnessforwomen #focusonyourself #mindsetiseverything #lifeover50 #womensfitnesscoach #nonnegotiable #nonnegotiables #menopausefitness #caregiverforlife #caregiverlife #morningrituals #mymorningroutine #startoftheday #weightlossjourney #proteincoffee #coffeeislife
Serving my residents #servantleader #myresidentsdeservethebest #sunday #elmcroft #loyaltothebrand #missmycfcfamily #stna #caregiverforlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
Thinking about a career with CTL? Wondering what it's like to work here? 😃 Find out what our employees have to say about it. 💬 We recognize that we are incredibly lucky to have such a great team of people! 👏🏻👏🏻 This is just a handful of testimonials from our team, but their kind comments say it all! Employee Testimonials 👇🏼 "I feel honored and blessed to work at CTL." Jenny P. "I feel so lucky to have such and incredible team, and to work at CTL." Leslie P. "CTL is such a great company to work for, they are like family." Kim H. "I love working for CTL because I get to work with people who care for those who are unable to care for themselves." Jim S. "CTL is a great company with people who really care. I love my boss Ms. Cece! She is wonderful and I know that when I need help she is there for me, day or night." Stacey M. "Management is very caring and supportive of their staff, and always makes a point to recognize their hard work. Working at CTL is like a breath of fresh air." Gail P. "I love working at CTL and love the people. Jeff and Andy make it so easy to come to work, it doesn't feel like work at all." Jackie D. "I like that CTL is a small family-oriented company. We have shared goals and we all work together to provide the best care for the people we serve." Kareen "Alone we can do so little, but together we can do so much." Renee "I love working at CTL, it's a great company with great people! Angelica "I am grateful to working for such a family-oriented agency, the journey with CTL has been amazing." Celenia "CTL is a very welcoming company. We have a great team! It's wonderful to have so much autonomy. I haven't quite been here one year, but have learned so much! Autumn G. "I am so grateful to work at CTL, and couldn't say enough good things about the company. I love the culture, which is inclusive and centers on teamwork." Celibee "I love the company culture. It's a professional, yet fun and relaxed environment. Jeff and Andy are really great!" Karen “I love working here! I’m having a great experience.” Ashley W. "CTL is like family, they really care about people, and I can’t say enough good things." Tricia C. **
We are so thrilled to announce 📣our next Employee of the Month, Tricia Carr! 👏🏼👏🏼👏🏼👏🏼 A big thank you to Tricia, for your remarkable work, you have truly gone above and beyond!!! We're very thankful for you, for your kindness, compassion, dedication, and for the love you’ve shown to your clients, especially Dell. In our heartfelt conversation, you mentioned that you had found your calling and that you love 💗 what you do so much that you would do it for free. Nothing conveys this more than these statements from you. “It is deeply meaningful and fulfilling”. “I really just want to care for her and make my client smile.” “I vow to care for her for the rest of her life, no matter what.” You are the kind of caregiver that anyone would be lucky to have! And, we feel incredibly lucky that you are part of our team at CTL! When we asked you what you felt about working with us — you graciously said that we were like family, we really care about people, and you can’t say enough good things! Thank you for these kind comments. 🙏🏻 We take them to heart. ❤️ Your hard work and dedication is what makes us a successful team, and allows us to continue to serve clients across Connecticut and Massachusetts. Thank you! We couldn't do it without you! 💙 Happy. Healthy. At Home.🏡
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
CNA's are the unsung heroes of our time. . 👉 Click on the link in our BIO @legenddesignco if you want this premium quality shirt or any other of our positivity themed shirt designs.
We appreciate all the Proud Caretakers out there. Thank you! . 👉 Click on the link in our BIO @legenddesignco if you want this premium quality shirt or any other of our positivity themed shirt designs.
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
We offer a range of services that let folks remain living independently in their own houses. Allow Sirleaf Home Care to assist with a broad range of tasks. Get to know us more do visit https://www.sirleafhomecare.com/about-us/ #caregiverforlife #caregiveratheart #caregiverlife
Pancake ingredients: 2 Large eggs, 2 cups of milk (skim, low fat or full fat) & 1/4 cups white self raising flour. Instructions: Whisk the eggs and milk together to combine. Add in the flour, and beat until the batter is smooth and lump free. Add in any option add-ins you like here. Heat a nonstick pan over low-medium heat with cooking oil spray. Wipe over excess; pour about 1/3 cup of batter per pancake. Cook pancakes for 1 to 2 minutes, or until bubbles appear on the surface and the bases are golden brown. Flip and cook until golden; transfer to a warmed plate; repeat with remaining batter (spraying/greasing pan between every second or third pancake if needed). Serve immediately with yogurt, ice cream, whipped cream, maple syrup, berries, or any other toppings you like. Enjoy! #theperfectrecipe #theperfectreceipe #caregivertips #caregiversupport #caregiverservices #caregiverforlife #caregiverjobs
Welcome to Vlogmas Day 11 where Jess, who is autistic and blind, goes through the process of picking out some of her favorite Christmas CDs to listen to. Sort of. 🔗 Link in Bio & Story. I have always strived to show our lives as-is in our daily videos. However, in short video snippets, it is impossible to get a true feel for some of the daily challenges we face as lifelong 24/7 caregivers. In real time, this was 50 minutes. I edited it down to 20 minutes. If you want to want to truly witness how simple things are almost never as simple as they seem, please watch to the end. To understand the whole, it needs to be beginning to end. I completely understand that many of you don’t have the time. But if you do, when you are finished watching, multiply that experience times every day for 30 years. It’s not a bad thing. It just is what it is. This is life in our world. We don’t ever do anything in a hurry. It took me many many years to figure out that I needed to slow down, accept that speed, and stop stressing over time constraints. In other words, I had to accept my own limitations. That was hard but once it happened, oh my gosh, it was so freeing.
One step at a time works out pretty well #instagram #instagood #oregon #pnw #caregiver #mentalgrowth #newperspectives #selfchoas #cna2 #mother #caregiverforlife #caregiverfordisabled #coffeedrinker #chores #momlife #livelife #impressyourself #blondehair #blueeyes #caregiver #mother #daughter #learningdaily #caregiverforlife #selfapproved #selflovejourney #selfmotovated #sharingpassion #coffeelover #livibglife #dailytasks @adls #live
But I can’t let 11/12 end without wishing my baby, my Bum, Doody Bop a Happy Heavenly 24th Birthday. I can’t believe it’s been 5 years since I’ve seen his handsome face (in person), shared a laugh with him, ate dinner with him. It’s a pain I can’t really put into words. I just know never in a million years would I have imagined this would be life. Smh. But I won’t get sad; I’ve been cool all day. I just thank God for the time time I was granted with him. Even if he was just stopping through this side of life for a brief period of time. Every second was blessing. Happy Birthday Bum! I know Granny made it special (I’m jealous 😩😂). Until we meet again, we still squad baby. On earth and at them gates! Extra hits, extra pickles 🤞🏾💙 #OneLoveOneQuan #CaregiverForLife #MyHeart
It’s hard to believe in only 5 months we will be bring a little princess home! Time is flying by Would love a baby girl name that begins with an E ... Any suggestions? #girlpower #girlnames #girlmom #momofallgirls #fitmom #mealprepping #foodie #daycareprovider #caregiverforlife
Depression is real and eating is my outlet. This morning I’m back on it determined to be strong through the process. Momma would want me to take care of me!!!! I’m pressing and I’m praying. #loisingmama #depressionisreal #tlcproducts #nutraburst #iasotea #NRG #MVNoel #caregiverforlife
✨ Wednesday Check in! How is everybody doing? What are you struggling with right now? . . . #caregiversupport #momtrends #primarycaregiver #solecaregiver #caregiving #caregivingtips #caregivers #caregiverforlife #caregiverforcaregivers #caregiverforelderly #careformyparents #careforyourself #careforyourparents #careforyourlovedones #caregiverandhomecook #quotesfortoday #healthquotesinspiration
To all my fellow doctors today’s your day! Thank you for all you do for the well-being of others. I salute you! #healthheroes #physicians #psychologists #pharmacists #physicalandmentalhealth #caregiverforlife #dedication #hopedealer