Parents of medically complex children rarely get to just walk in the role of “mom” or “dad.” Some days I long to be just mom. Not occupational therapist. Not physical therapist. Not speech therapist. Not respiratory therapist. Not supply coordinator. Not case manager. Not equipment specialist. Not nurse. Just mom. And before you try to relate to us by giving an example of how you had to care for your healthy, non-complex child when they got hurt, or when they were sick please don’t. While it may make you feel like it provided a small glimpse into our lives and gives us a sense of comradery it doesn’t. It only makes us envy the ability to be able to live that kind of life. Which touches on the fact that many of us have pulled back because we just don’t know how to relate anymore and it causes us to struggle. But that’s another Olivia for another time. #medicalmom #medicalmomlife #medicalmama #medicalparents #medicalparent #medicallycomplex #medicallycomplexkids #medicallyfragile #raredisease #rarediseasemom #raremom #raremama #vent #trach #trachlife #tubie #tubielife #caregiver #caregivers #braininjury #brainavm #pediatricstroke #honestmom #honestmotherhood
The memories of those first bruises are never fun to look at. It was one of the scariest times for us with so much unknown. Thankfully we connected with @nehemophilia almost immediately and they turned our fears into friendships. 3 years after our very first ER trip Axel is thriving! He confidently sports his medical bracelet, helps with his infusions, reminds us of his “medicine days” and is learning more and more daily. We truly owe most of this confidence to our NEHA fam. Learning from other parents and older kids is some of the best advice we could have ever received. We have launched our annual walk team again for this year and couldn’t be happier to be supporting this community. If you can, please consider donating to Team Axe Factor! ♥️ #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
Picking up where I left off: Mom fell and fractured her hip (3-9) Partial hip replacement surgery, then rehab for 2 weeks. She is now in Memory care at a decent facility (she only needs memory care due to her great attachment of home and looking to exit, plus she's too much for Dad) They are telling us she won't be able to stay there when the funds run out. They do not accept Medicaid. It's unfortunate we didn't know that before we placed her. It will be incredibly disruptive to move her again. She is up and down. A doc started her on meds that help, but every day is different. There are days when she's okay, and there are days when it is miserable to be around her and she can be very mean to her family. Dad's ulcer healed. They put him on blood thinners to avoid a concern developed in January when he almost had a heart attack. We almost lost him. He can't stay on blood thinners long-term due to his high risk for bleeding. He did have his surgical procedure 5-15 to help avoid blood clots, and everything seems to be healing and doing fine. He has more procedures coming to verify everything looks good. Dad is under extreme stress mostly due to mom. It is all taking a toll on him physically, mentally, and emotionally. To maintain some of my parents' privacy, I will stop there and request prayers, please. 🩵 Preston is stable. I am giving him Peritoneal Dialysis at home 3 times a day. Preston has been listed for a kidney transplant for more than a year now. We are able to keep him primarily stable at this time. I am meeting with the head of the Kidney Transplant team once a month. We see his local Kidney Doctor once a month. We keep in contact with his heart transplant team regularly. We are maintaining all the fun things that are required of a heart transplant recipient. We will be making a trip for a cath lab procedure plus CT, and more discussions are planned. Visits scheduled with kidney and liver transplant in the near future. 💚 My daughter is a very busy lady who celebrated her birthday this month. She is a light. My husband and I are busy being caregivers for many loved ones. More on Preston and kidney transplant coming soon.
Asher has some wonderful news to share. Read her blog to find out!!! (Link in Bio) #medicalmom #medicalmama #medicalmomlife #thisismotherhood #specialneedsparents #specialneedsmom #rarediseasemom #rarediseasemomlife #specialneedsjourney #specialneedsmomlife #honestmotherhood #motherhoodinspired
You might be the mother of a medical fragile child when, you’re doing school work and your first thought when you see this image. Is wow that’s a big Epilespy trigger. #medicalmomlife
One of the harder things about being a medical mom is the access people need to have to you, your child and your home. Sometimes I just want a long break to be able to simply live our lives. People have access to me most days of the week. I can’t just simply decide to avoid their calls or visits. If I do orders don’t get made, therapies don’t get done, prescriptions don’t get filled, questions don’t get answered, appointments don’t get made, equipment doesn’t get fixed… so when I go quiet trust that I do so to protect my mental health. It is not a reflection of my personal relationship with you. Nobody should have to give full access to themselves all the time. It’s exhausting and unhealthy. Pulling in is necessary to give myself a reset and be better equipped to go on in this role of medical mom. #medicalmom #medicalmomlife #medicalmama #medicalparent #medicalparents #medicallycomplex #medicallycomplexkids #medicallyfragile #raredisease #rarediseasemom #raremom #raremama #caregiver #caregivers #mymotherhood #honestmom #honestmotherhood #realmotherhood #trach #trachlife #vent #tubie #tubielife #braininjury #avm
We experience more feel more see more. It’s not perfect it’s not easy and there we are appreciating so many beautiful moments #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting
When you talk solutions not problems When you think of what you have and not what you are missing When you wake up and fall asleep being grateful When you focus on what’s working and not on what’s not When you surround yourself with carrying people THIS IS WHEN YOU RAISE UP AND SHINE YOUR LIGHT 🙌 what else would you add ? #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting #specialneedsparents
Last week NEHA held their Red Tie Soirée and it was a huge success! While we danced the night away, NEHA was able to raise vital funds to support this community and honor a few absolutely amazing women! So happy to have been able to be a part of this. A HUGE shout out to a handful of people close to my heart who volunteered time, talent and auction items to make this night a success: 📸: @kristin_robinson_photography 🌹: @belleblossom12 👄: @southbostonlash 💉: @vitalityivhydration Thank you for always supporting a cause that means so much to me!!! #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
Sometimes you just need to bawl your eyes out to daddy about how life is so unfair because everyone can eat whatever they want and you can’t. Asher doesn’t care much about food so it’s really rare that she complains, but every once in awhile (usually when she’s over tired) Asher will have a melt down about how unfair her life is. And damnit if anyone deserves to complain it’s this girl. So I let daddy soak in all of the cuddles while I cry into the dinner that I’m making that triggered the melt down in the first place and hate myself a little bit. I’ll try again to be a good mom tomorrow. 😭 #medicalmom #medicalmama #medicalmomlife #thisismotherhood #specialneedsparents #specialneedsmom #rarediseasemom #rarediseasemomlife #specialneedsjourney #specialneedsmomlife #honestmotherhood #motherhoodinspired
Your best was ENOUGH today 🤍 Keep showing up for yourself to continue to show up for your kids 🙌 #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting
One thing I found myself saying on repeat during my Son’s in-patient stay was “we tell him what we are doing before we do it.” Why? Because people lack respect for non-speaking children and their right to bodily autonomy. Many healthcare professionals see a job when they see our disabled, non-speaking children. Because they cannot speak they assume their intellect is impaired and they can just go in and touch whatever part of their body they are “qualified” to assess. This couldn’t be farther from the truth. They deserve more care and respect in my opinion. Care to explain why they are there and what, in detail they are about to do while getting their permission. Put yourself in their position and ask “what would I want in this situation?” Then do more. Our non-speaking children still deserve the right to be addressed like a human being and their right to bodily autonomy respected. You WOULDN’T go grab a speaking child’s arm and twist it around without explanation, don’t think that it is appropriate or okay to do it to our children. Doing so Dehumanizes them, takes away their voice and nulifies their intelect. Your job is not to evaluate whether they can understand you, your job is to address and speak to them as you would any other child respecting their body and their feelings. Not doing so will result in correction. Period. Slides read the following on a yellow/ orange background: One thing I found myself saying on repeat during my Son’s in-patient stay was “we tell him what we are doing before we do it.” Why? Because people lack respect for non-speaking children and their right to bodily autonomy. Respect our non-speaking children’s right to be addressed like a human being and their right to bodily autonomy. You WOULDN’T go grab a speaking childs arm and twist it around without explanation, don’t do it to our children. Doing so Dehumanizes them, takes away their voice and nulifies their intelect. Don’t dehumanize our non-speaking children. Your job is not to evaluate their intellect. Your job is to address and speak to them as you would any other child respecting their body and their feelings. not doing so will result in correction.
too many to count 🫶🏻 . . . #medicalmom #medicalmama #toomanytocount #disabilityparenting #advocate #advocatelikeamother #caregiver #caregiving #hospitallife #medicalmomlife #joy #sorrow #purposeinthepain
Waiting on my daughter to be done with her CT. She injured her wrist at basketball a couple months ago and it hasn’t gotten better. X-ray showed no breaks but something inside her radius bone. Was more prominent on the follow up X-ray a month later. CT to get a better look at it. 🩵 This isn’t her first CT, luckily she doesn’t remember any of what she went through. All that is in the back of my mind today. Could be related. Maybe not. 🩵 Listen to episodes 9 thru 11 of the podcast to catch up on that broken piece of my story 🩵 #medicalmom #medicalmomma #medicalmoms #medicalmomlife #brokenstories #brokenstory
HAPPY WORLD HEMOPHILIA DAY!!! These two kids are proudly rocking their red today in honor of WHD! Please consider celebrating with us by supporting our annual walk team to raise funds and awareness for those living with Hemophilia and other bleeding disorders ♥️ Link in bio to read more and support our walk team. #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
As special needs moms, we have to make a lot of life-altering decisions in regards to raising and caring for our children. We have to decide which doctors to see, whether or not certain treatments are worth the risk, or maybe it’s deciding if a particular therapy is worth the cost. But over the years, after working with countless special needs moms, I’ve realized that it’s not these big life-altering decisions that end up having the biggest impact on us or our children. It’s the small ones. It’s the day-to-day decisions on how we spend our time and how we show up to our roles as moms. This week on the podcast, I dive into 5 decisions that will change your life as a special needs mom. Go listen in on your favorite podcast platform. Have you listened in already? Drop an emoji below that best describes your thoughts on it! • • • • • • • • #medicalmom #specialneedsmom #specialneedsmomlife #medicalmomlife #disabilitymom #advocatelikeamother #rarediseasemom #workingmom #momlife #specialneedsparenting #autismmom #leukodystrophy #cerebralpalsymom #cpmom #podcastforwomen #podcastformoms
I feel it and then I let it go… I don’t want to stay there for long I want to live in a beautiful state feeling joy and love looking at my kids smiling ❤️❤️🩹 #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting #recoverystory
I’m always torn between, wanting to go back to when she was so small and tiny, and wanting to forget that this time ever existed. Asher being small and innocent was also the exact same time when she was the sickest she’s ever been and the most pain she’s ever weathered. So I know that if a genie granted me a wish to go back to this tiny cuddly little toddler that I’d undoubtedly decline. I wouldn’t trade her health for a million cuddles from this sweet precious toddler girl. I miss her so much. I hate that our time together was tarnished, but the sweet girl that I have now is all I need. #throwback #throwbackthursday #medicalmom #medicalmama #medicalmomlife #thisismotherhood #specialneedsparents #specialneedsmom #rarediseasemom #rarediseasemomlife #specialneedsjourney #specialneedsmomlife #honestmotherhood #motherhoodinspired #thisismotherhood
Today I AM exhausted. and thoughts like … we should be on the beach playing …instead of planning ANOTHER intervention … hunt me today … MEDICAL MOM LIFE #medicalmomlife #specialneedsmum #specialneedsparenting #specialneeds #specialneedschildren #specialneedschild
So much of social media highlights only the good moments in one’s life in an attempt to make people think our lives are better than what they are. So, in an attempt to bring back the realness, here are some truths about me that I don’t share much about. -This was my families life before stroke ravaged it (2nd photo). We loved vacations, family outings, the outdoors, hiking and making memories. All of us miss this aspect of our lives deeply. When any holiday comes I cringe and grit my teeth before any meeting or appointment where someone is going to ask me if I “have any plans” so I don’t break down. -My daughter has an undiagnosed medical issue that I also manage along with all my son’s medical stuff. It brings her regular pain and makes me fight feelings of failure. -I cry. A lot. It helps me deal. Strong does not equal not crying and toughing it out. In fact I am usually only strong after I have had a good cry, or through tears. -I was diagnosed with complex PTSD before my son’s medical trauma… imagine what it’s like now 😬 -I have very few close relationships now, but the ones I have I couldn’t do without. Most of those are medical mom friendships that help soothe my soul. -I am home most days of the week unless there is an appointment which is the complete opposite of what it used to be. I now have a vitamin deficiency so I take supplements and try to soak in the sun when I can. I also take a few hours once a week to get out by myself for my mental health. I hope this has helped you see more realness in my life… but to be fair, we keep it pretty real here on the regular. 😉 Have a question? Pop it down in the comments! #reallife #mymotherhood #honestmotherhood #honestmom #medicalmom #medicalmomlife #medicalmama #medicalparent #medicalparents #medicallycomplex #raredisease #raremom #raremama #rarediseasemom #caregiver #caregivers #trach #trachlife #vent #tubie #tubielife #gtube #braininjury #pediatricstroke #brainavm
Ever find yourself too tired, too busy, and just too worn out to do the things that make you happy? Maybe it’s being too busy to go grab coffee with a friend, or being too tired at the end of the night to do anything other than watch Netflix and scroll on your phone. And before you know it, you don’t even know what you find fun or enjoyable anymore! I see this pattern happening a lot for special needs moms (and I’ve been guilty of it myself too!). In episode 126 of the Overcome the Overwhelm for Special Needs Moms podcast, I coach you on the #1 thing that keeps moms from being happy, and also what to do about it. Because being a mom shouldn’t mean losing our own happiness.💛 Go listen in on Apple Podcasts, Spotify, or by clicking the link in my bio. • • • • • • • • • • #medicalmom #specialneedsmom #specialneedsmomlife #medicalmomlife #disabilitymom #advocatelikeamother #rarediseasemom #workingmom #momlife #specialneedsparenting #autismmom #leukodystrophy #cerebralpalsymom #cpmom #podcastforwomen #podcastformoms
My “subscription” box is a whole vibe #medicalmomlife
Just a reminder 🫶🏼 #yougotthis #youcandoit #youarenotalone #medicalmomlife #youcanmovemountains #medicallycomplex #specialneeds #specialneedsparenting #caregiver
A huge thank you to @patientworthy for featuring Axel’s story this Bleeding Disorders Awareness Month! Please follow the links in my stories to listen to the “Wait How do you Spell That? A Rare Disease Podcast” where I had the chance to share Axel’s story and spread a little awareness to this disease. 📸: @kristin_robinson_photography #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
When it’s Bleeding Disorders Awareness Month and your son brings you home a tulip he made for you 🥹🌷♥️ #WelcometoHolland #IYKYK #lovemyboy #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
He shows his strength and teaches me everyday to keep going even if it’s challenging and unpredictable 🙌 As my daughter says we don’t give up in this family ❤️ Thank you for all messages and prayers 🫶 We are doing good ❤️ still investigating the reason for fever spike but Zack is as always very patient and full of smiles. IT IS A GOOD DAY 🌞 #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting #recoverystory
Today’s confession of a rare disease mama. #raremamas #medicallycomplexparenting #specialneedsparenting #medicalmomlife #medicalmamatrauma #rarediseaseparenting #disabilityparenting #raredisease Who else feels this way?
“You can’t pour from an empty cup.” I pour from an empty cup every day. You might think I’m exagerating when I make his statement. I can assure you I am not. Even when I do get a chance to take care of myself, it never replenishes what has been expended. The needs are too many. My day starts in depletion and always ends far in the red. Debits being way more than credits. As a society we have somehow embedded into our consciousness that people are these vats of varying capacity needing to be filled up by our own efforts - “self care.” We’ve become so focused on preaching this that we have blinded ourselves from seeing that not everyone is in a place to do this. This blindness has also led us to put off compassion and take to using guilt to coerce people into it, telling them to “think of those who need you,” only truly helping the one making the statement by giving them the falsehood of being absolved of responsibility and action. We forget that as a community we can, and should, take care of each other by helping fill one another’s cups when our friend just doesn’t have the capacity to do so. You see care was never meant to be just self, it was meant to be communal as well. Now this isn’t to say that taking care of ourselves is not important. It is. A friend checked in on me the other day and asked if I was taking care of myself and doing something that helped me. I told her I was and that it was super important for my mental health. What I’m talking about here is this shoving of self care in other people’s faces with the feel behind it that they need to be able to pick themselves up by the bootstraps… because that’s what it says to me, all while that person smiles and walks away feeling absolved of any further responsibility. To properly perform self care many things need to be in place for medical families… and the resources are just not there. So we make do with a cup of coffee in the quiet of the morning, or buying dinner so we don’t have to exert any more energy than we must, or having a conversation with another parent who just gets it without us filling in all the details and questions. Soap box done. Thank you for coming to my Ted talk. 🙇🏻♀️
How appropriate that NEHAs Consumer Medical Symposium is right in the middle of Bleeding Disorders Awareness Month♥️ A weekend full of education and hope for the future as we learn about new and developing treatments for bleeding disorders. As always a huge shout out to the volunteers that take care of all the kiddos so adults can attend all of the sessions worry free. After such a great weekend, don’t forget it is Bleeding Disorders Awareness Month - take a second to share your story and spread awareness for this community! Link in bio to support our community through our annual walk♥️ #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
Here at @nehemophilia Consumer Medical Symposium. Come see me and register for the annual UNITE for Bleeding Disorders Awareness Walk this weekend and get entered to win a $200 CVS gift card! #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
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
Our next Share Your Rare Warrior is ✨ Amelia ✨ Amelia is a genetic unknown interstitial lung disease, pulmonary fibrosis, non-cardiac pulmonary edema, chronic lung disease, asthma, epilepsy and KCNQ1 gene (Long QT) WARRIOR 🤍 Thank you, Brittany, @when_life.gives_lemons for sharing Amelia’s story 🫶🏼 “Rare Disease Awareness Day evokes a range of emotions that many people may not fully grasp. Amelia’s journey began with a genetic “activation event” that is believed to have triggered her rare progressive Unknown Interstitial Lung Disease (ILD). Alongside the diagnosis of Unknown ILD, her medical team also uncovered Pulmonary Fibrosis, Non-Cardiac Pulmonary Edema, Chronic Lung Disease, Asthma, Epilepsy, and the KCNQ1 Gene (Long QT), which is connected to her previous cardiac arrest’s she survived. Amelia is actively involved in multiple research studies to unveil the underlying cause of all her conditions, given their exceptional rarity. Unfortunately, there is no cure available for her conditions, only symptom management. Despite the uncertainties surrounding her health, Amelia continues to embrace life with a smile, dance, and laughter, relying on oxygen support continuously (24/7). While a lung transplant and other surgeries may lie ahead, she refuses to let her reliance on oxygen define her. Amelia showcases life’s strength by dancing to her own unique rhythm on Rare Disease Awareness Day.” #ild #rare #rarediseasewarrior #shareyourrare #rarediseaseawareness #medicalmom #medicallycomplex #interstiallungdisease #pulmonaryfibrosis #epilepsy #epilepsyawareness #kcnq1 #cardiacarrestsurvivor #fightforacure #advocate #awareness #raredisease #medicalmomlife #community #motherhood #mama
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
2/3 of parents suffer burnout and that’s more likely underestimated 🙌 Brain and body deserve to rest to function optimally. We must make time to recharge ⚡️ You can’t be on fast track all the time - we are on the marathon journey here 🙌 #parentalburnout #stayathomemomlife #stayathomemoms #stayathomemom #momburnout #momstruggles #momrechargetime #motherhoodunfiltered #medicalmom #medicalmomlife #medicalmamas
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
What a beautiful story and fills us with so much hope! 💚💙 @my.resilient.heart #giftoflife #organdonationsaveslives #becomeanorgandonor #kidneyhealth #kidneywarrior #nationalkidneymonth #Repost ・・・ LOVE and HOPE in their eyes ❤️ 8 months after double transplant we can spend weekends together at home. We never doubted those days were coming 🫶 Full of love joy and smiles. Never loose hope ❤️ #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting #recoverystory #tubefeeding #tubefed
LOVE and HOPE in their eyes ❤️ 8 months after double transplant we can spend weekends together at home. We never doubted those days were coming 🫶 Full of love joy and smiles. Never loose hope ❤️ #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting #recoverystory #tubefeeding #tubefed
Anyone feels the same way? Medical mom life 🙌 @ tag a mom friend who gets it 🫶 #medicallycomplex #medicallycomplexkids #medicalmamas #medicalmom #medicalmoms #medicalmomlife #momlifebelike #momproblems #momtruth #momssupportingmoms #momslife #momtribe #momtruth #motherhoodquotes #motherhoodmoments #motherhoodthroughig #realmotherhood #motherhoodunfiltered
Happy International Women’s Day! Shout out to all the strong women out there living with a bleeding disorder - keep advocating for yourself and taking up space. Bleeding disorders do not only affect men. Celebrate today and the rest March (Bleeding Disorders Awareness Month) by advocating for yourself or another woman you know in this community. ♥️ 📸: @kristin_robinson_photography #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
Ever get a missed call and your heart just drops? 📱❤️ That was me this week. Couldn't get to my phone and immediately, my brain went to "it's happening again. There must be an emergency and I need to get my child to the hospital." Being a medical mom, you kind of live with one foot in normal life and the other always ready to run to the hospital. No matter how much time passes, that fear just doesn't know how to quit. It's wild, right? You're chilling one minute, and the next, you're mentally preparing for the worst. This life has taught me to be tough, but man, it's also got me on a constant loop of what-ifs. But here's the thing—through all the ups and downs, we've gotten stronger. We've been through so much and we're still standing, still laughing, still finding those moments of joy. 🌈 So to all the medical moms and dads out there, I see you. We're in this weird club together, always ready, always waiting, but also always finding a way to keep going. Let's keep hanging on to those good moments, no matter how small. We've got this. 💪👨👩👧👦 #MedicalMom #Strength #Family #WeGotThis" #MedicalMomLife #FamilyResilience #russellsilversyndrome #specialneedsmoms
If you looked up DETERMINED in the dictionary, you would see a pic of this little stinker there! 😆 Let’s be honest here, Jemma HATES her wheelchair with a passion! 🫣 See exhibit A ⬆️⬆️⬆️🤣 Every morning before school we try to put Jemma in her wheelchair to ride the bus to school and she literally plays “stiff as a board” with us! 😆 She does not want to be in that chair!!! NOPE! You give her the chance to stand and she will stand til her little legs shake and quake and eventually give out! 😳 This kid wants her independence back, she is the happiest when she is getting a glimmer of that feeling of freedom! Later this month Jemma will do another 5 day intensive therapy session - 4hrs a day for 5 straight days. These are designed to make her stronger, more stable, and improve her quality of life 💗 … but they aren’t cheap 🫣 we’re talking $600 a day for these intensives! 😳💸💸💸💸 So I am asking my community here for help 🙏🏻💗 … all of my Sipology commissions this month will go right to paying for Jemma’s therapy intensive later this month at the @centrefordevelopment If you like tea, lattes, matcha, ICED tea, soups, greens, tasty vitamins, herbal MEDICINAL tea, TIPSY tea … if you can drink it, we probably have it 😆🙄! Please check out the link in my bio ⬆️ to support Jems this month to help us pay for her physiotherapy and occupational therapy! And if you would like me to help you personalize your order, just message me 😘📨 Thank you so so verymuch to this amazing community of people who really care about our family and Jemma, and want to see her happy and WALKING AGAINN!!!!! 💜🚶🏻♀️⬅️👩🏻🦽💜 #medicalmom #medicalmomma #medicalmomlife #medicallycomplexwarrior #disabilityawareness #wheelchairlife #therapyworks #willwalkagain #disabledlife
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
Hemophilia is commonly misunderstood as a males disease. This Bleeding Disorders Awareness Month, here is your reminder that women can have hemophilia and bleeds just like men. Daisy has moderate hemophilia and thankfully is followed by our HTC just in case she ever has an issue. #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
To be honest, I had NO IDEA what this was a picture of or what he wrote. Bowling!!!! That’s right! We went bowling over Feb break 😊🎳💥 #bowling #strike #febbreak #typicalthings #normalcy #doingthings #kidfun #medicallyfragilenomore #medicalmomlife #germs
We went to the zoo the other day and it was BANANAS (and if you just want the song I love you 😆). We attempted to go on a Saturday afternoon and there was no access. No van accessible parking spots left… not that there are that many to begin with. We would have considered dropping and parking but the lines were out to the parking lot and not much wheelchair maneuverability AND there were people on top of people… no thanks. We tried again the next day in the morning and it was almost the same. This time we were able to drop and park. Then the stares came. Now I’m used to stares by now, not that they don’t still bother me, but there is staring and then tripping over yourself staring or stares that say “why are you here?” It’s always a struggle for me going to places like this. Accessibility, people, attitudes, people going out sick… I could go on. Then I get to thinking… I wish people would teach their children, and themselves, to smile and say hi when they see a person with a visible disability. This way instead of staring and making us feel like we don’t belong we will actually feel like we have a place in this world as we deserve, just like them. Everyone should be able to go out and enjoy their community in peace, Not just people who can access this world with ease and without barriers. It’s called inclusion if you need the word. I wish people would teach their children about disability, kindness, respect and inclusion. Then they would be prepared both mentally and emotionally to hold space for people who appear different than them. Children grow in ableism and hate, they aren’t born that way. Feed their minds kindness and acceptance will bloom. Feed them hate and callousness and cruelty will darken their souls. Continued in comments…
In honor of Bleeding Disorders Awareness Month, we launched our annual walk page. Team Axe Factor is ready raise awareness and funds for this community ♥️ link in bio to learn more and support our team #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
WEEKENDS ❤️ being under one roof 3rd time over the last 8 months 💫 We have waited for it so long. That picture says it all. Glued to the window waiting for her little brother to come home ❤️ Kids playing together cuddles and laughs and reality of medical needs, preparation and timing 🙌 Logistics and organisation behind the relaxing and fun family time. How do you find a balance between meeting medical needs and making the precious time memorable and fun ? Medically complex journey Rare disease Rare parenting Medical mom #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #specialparenting #recoverystory
In honor of Bleeding Disorders Awareness Month, take a minute to learn a bit more about Hemophilia A, the bleeding disorder that Axel was diagnosed with at 10 months old. #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
Happy March, Happy Bleeding Disorders Awareness Month. 🩸 March is an opportunity to share our stories, spread awareness, educate others and support those with bleeding disorders. In 2021 Axel was diagnosed with severe Hemophilia A. As a result, Daisy and I were tested. I am a carrier and Daisy was diagnosed with mild Hemophilia A. If you or someone you love has a bleeding disorder, I encourage you to take a minute this month to spread awareness and educate someone♥️ #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders
Un poquito de el bautizo de MEREDITH 🤍👼 nuestra navidad y el peor momento que estábamos pasando con nuestra pequeña, me aferre tanto a ella y aún más a dios para que me hiciera ese milagro que tanto le pedí con lágrimas , con todas mis fuerzas, ahora me arrepiento aver pensado hasta lo peor y por un momento aver pensado que dios no me escuchó . Tu vestido blanco te espera para llevarte a la iglesia como quería hacerlo para tu bautizo mi pedacito de cielo 🤍☺️🤍🤍🤍 estoy tan tan orgullosa de ti por luchar tanto siendo tan chiquita tan frágil también se que dios te dio esa fuerza para no dejarte vencer se que dios me escuchó cuando te puse en sus manos gracias a dios te dio el regalo mas bonito “ el regalo de la vida” 🤍 yo como tú mami estoy más que lista para este nuevo camino para protegerte, cuidarte, darte mucho mucho amor aún mucho mas del que te mereces mi pequeña gran luchadora 🤍🦋 te amo 😭💕 @mlhofdallas @childrens #heartwarrior #babyangel #nicubaby #nicu #medicalmomlife #medicalmom
This last day of February is Rare Disease Day! Families like mine choose to “show our stripes” in order to shine a light on the 300 MILLION people worldwide living with a rare disease. 🦓✨💜💚 But instead of reciting definitions or statistics (which are important - and probably shared elsewhere by better spokespeople than me), I just want to share a joyous “inchstone” - the kind of small victory that fellow rare disease parents know is actually HUGE. 🥹 Last week Rosalie communicated that she wanted to use her walker (instead of sitting in her adaptive stroller) to leave PT and go back to our van. I was floored! The whole time I helped her navigate I blinked away tears - not just because I was beyond proud of her, but also because this was something she hadn’t done in at *least* 16 months (probably longer). This “simple” walk leaving an appointment is something most of us take for granted, but it’s a skill that Rosalie has worked for YEARS to achieve. And it’s a skill we could lose at any time. 💔 It’s a skill she used to have - ⚡️Before the daily seizures began 2.5 years ago ⚡️Before the revolving door of failed treatments and their nasty (sometimes debilitating) side effects ⚡️Before she underwent her 7th surgery, which required months of rehab therapy ⚡️Before her 8th surgery was a success, but eventually led to rare side effects that temporarily (for MONTHS) impacted her ability to communicate And today…she did it again! 😭👏😍 This rare life is full of unknowns. But what I do know is that this girl is a ray of sunshine and one of the strongest, bravest people I know. We will do whatever it takes to give her the best possible medical care and quality of life we can. She never gives up and neither will we. ✊ Learn more about her rare disease and/or how YOU can help improve the lives of families impacted by LGS through advancing research, awareness, education, and family support: 👉 @lgsfoundation 💜💚
It’s #RareDiseaseDay , it’s only fitting that Axel woke up with blood all over his face, am I right? Axel woke up with blood all over his face, hands and pillow. When I asked him what happened he said “I sneezed too hard”. With allergies, hemophilia and a dry nose, here we are🤷🏻♀️ Thankfully his nose seemed to stop bleeding on its own because all the blood was dry by the time I woke him up for school. But on rare disease day, here’s your reminder: you never know what people are carrying. Hemophilia, as well as many other diseases, is often invisible, until you sneeze too hard😂 #hemophiliaawareness #hemophilia #hemophiliaA #hemophiliac #hemophiliaadvocate #advocate #medicalmom #medicalmomlife #hemophiliaproblems #hemophilialife #hemophiliawarrior #hemophiliawalk #hemophilamom #hemophiliafastfacts #themoreyouknow #hemophiliafacts #hemophiliacommunity #bleedingdisorders #hemlibra #genetherapy #wickedstrongfamily #bleedingdisordersawareness #theaxefactor #unitewalk #uniteforbleedingdisorders @patientworthy
This is doing theology too 🤍 All is well and rest is warfare. She’s healing beautifully and we are so grateful. #womeninseminary #medicalmomlife #teachtruthlovewell #chaplain #amwriting #writingcommunity #disabilitytheology #womenintheology #Lipomyelomeningocele #laminectomy #fearfullyandwonderfullymade #forflourishing #spinabifida #lipomyelomenigecele #rarediseaseday2024
Our journey UPDATE After spending weekend at home we came back to hospital. Couldn’t be happier to hear that Zack’s results are giving us a green light to go back to the reeducation centre. So here we are starting therapies again and preparing to spend another weekend at home. Please send Zack 💪 and positive energy to continue his recovery 👇 #recoverypost #bravekids #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior i #methylmalonicacidemia #medicalmom
When we use the term “spa day” around here, it means that Jemma needs allllllll the things! 😂🛁🧼💆🏻♀️🧖🏼♀️ That means a bath, change out her ostomy bag, treat the granulation tissue around her g-tube with silver nitrate, clean out her ears with a special ear tool and of course trim her nails and toenails. It’s no easy task and takes us about an hour to get it all done! But afterwards she’s the happiest little girl 🥰💖💖💖 #medicalmomlife #caregiving #specialneedsparenting
✨ Sometimes a hug from daddy can make everything right in the world ✨ I’m so grateful for these little moments. Early early on in this medical journey I chose to let daddy be her hero. The one who she went to for comfort after all of the procedures. The one who was only good and never held her down for anything awful. The one that she trusted. I chose this because it was practical, I went to all of the appointments anyway while he had to work. I chose it because I was already broken, I had seen awful things and I wanted to spare him from that. I chose it because Asher needed a parent to trust fully and it wasn’t me because I took her to be poked and prodded. And above all I chose it because Asher needed a parent who wasn’t broken, one who wasn’t consumed by anxiety. So daddy became the hero, hers and mine. In time I became her hero too. I don’t regret my decision for a minute. I did what I had to for my daughter, for my whole family. To this day it’s one of the most selfless decisions I’ve made. In the moment it was hard and I’m still working through those times in therapy, but looking at this picture I’d do it all over again. #medicalmom #medicalmama #medicalmomlife #thisismotherhood #specialneedsparents #specialneedsmom #rarediseasemom #rarediseasemomlife #specialneedsjourney #specialneedsmomlife #honestmotherhood #motherhoodinspired #thisismotherhood
My Bubbie has been standing much more on her own with some back support. She’s been able to stand longer on her own. She’s been getting herself stable the best way she can because she’s still learning how to put pressure on both legs. So proud of her❤️🫶🏽 #trachbaby #tracheostomybaby #bpdawareness #gtubebaby #gtubelife #preemie #preemiestrong #28weekpreemie #medicalmom #medicalmomlife #therapy #broncopulmanarydisplasia
Rare moms ⬇️ Your stories of strength, hope and resilience are so powerful. Thank you for being a part of community of supportive loving and encouraging moms. Thank you for letting me be a part of your journey too. Together we raise awareness, break down barriers, and support one another. We are here to uplift and empower one another on this extraordinary journey. ❤️ Follow if you resonate with me 💌Share with moms who are on a similar path 📥Save for daily dose of encouragement and hope #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior i #methylmalonicacidemia #medicalmom #momsupportingmoms #momsupport
Life of a medical mom. Can you relate? The mixture of emotions I have never experienced before ❤️ Sending love to all special complex medical needs parents 🙌 #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior i #methylmalonicacidemia #medicalmom #rareparenting #specialneedsfamily #specialneedsparenting #specialneedsparent
💪Physical Therapy Thursday with sweet Rosalie! 😍 Rosalie has big goals for 2024! She has worked up to standing 1 hour each day at 30⁰ abduction per leg that’s 60⁰ bilaterally! 🤩 Keep up the hard work with your standing program Rosalie!! 📸 @stephaniebluebirds 🎉💚 A few benefits of routine standing may include: 🌟 Building endurance 🌟 Improving circulation 🌟 Improving bowel function 🌟 Lessening the progression of scoliosis 🌟 Improving or maintaining bone integrity and skeletal development ✨ Request a demo today and learn more about early intervention standing, hip surveillance and explore Zing Standers models and features on our website: www.zingstanders.com . . . #Zing #ZingStanders #Stander #PT #PhysicalTherapy #StandingFrame #Hip #HipIntegrity #HipSurveillance #HipSubluxation #HipDysplasia #CerebralPalsy #CP #StandForCP #CerebralPalsyKids #SDR #SDRChangesLives #PediatricTherapy #Physiotherapy #PhysicalMedicine #MedicallyComplex #MedicalMom #MedicalMomLife #Disability #DisabilityAwareness #RareLife #Epilepsy #IntensiveTherapy #StandingRoutine
As a special needs moms we desire to find a sense of balance and fulfillment in our lives. We also desire to find tools and techniques to manage stress, anxiety and overwhelm, as well as support in prioritizing our own self-care and emotional well-being. We desire pursuing our passions and interests while still being able to provide the best care for our kids. My kids are not only my reason for strength but also the guiding light that illuminates path when everything else seems to crumble. Together we navigate unknown paths, celebrate small victories and overcome obstacles. Remember, you are not alone on this journey❤️Connect with a community of fellow special needs moms who understand you. Share your stories, find support, and discover the tools and resources that will empower you to prioritize self-care, manage stress, and nurture your own emotional well-being. Embrace the incredible strength within. You are an extraordinary mom and your child is your greatest inspiration #warriormom #warriormomjourney #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom #raremoms #rarecaregiver
The MAP of raising a special needs child may have unexpected challenges, but the love, patience, and determination we create a story of resilience and growth 🙌 Medical mom challenges Medical mom life Medical mom strength Rare mom Little Warrior #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #rarecaregiver #raremamas #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior #methylmalonicacidemia #medicalmom
I miss being able to feel joy and only joy. Joy that doesn’t have to share space with grief or sadness. Joy that fills your soul and lifts you up in its warm embrace. Joy that carries you through the day with its hope for the future. After a life altering and limiting diagnosis joy always comes with another heavy emotion to weigh it down. No matter how hard we try. Whether from a memory you know will never happen again or a piece of them you miss so badly it torments your soul. This is rare disease. This is what no one talks about. This is what lies inside of that strong person you see. Weakness. #raredisease #rarediseaseawareness #medicalmom #medicalmama #medicalmomlife #medicalparents #medicalparent #medicallycomplexchild #medicallycomplexkids #medicallyfragile #avm #brainavm #pediatricstroke #caregiver #caregivers
His little lip smacking might be the cutest thing ever 😍😍😍😍 #cute #medicallyfragile #myboy #socute #babyboy #krabbeleukodistrophy #mom #momlife #medicalmomlife #medicalmoms
Embracing the wisdom and experiences shared by medical moms but also trusting my instincts as a mother and advocate for my child’s individual needs. What community of special needs moms means to you ? RARE MOM remember You are not alone on this journey 💞 #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior i #methylmalonicacidemia #medicalmom #raremamas #raremom #raremama
Suffering is real and God is good. The tension is real and both can be true.
This one is for the caregivers who are looking to thaw their spiritual frostbite without melting into a puddle. ( the Ash Wednesday post that’s a day late, because of course it is). Link in bio to today’s substack post for more 🤍
We’ve certainly heard a lot about Post-Traumatic Stress Disorder, but have you heard about Post-Traumatic Growth? In the research I’ve been doing for my book, I’ve come across numerous articles about this growing topic of study. Post-traumatic growth is when people go through positive psychological changes after dealing with tough situations. For special needs parents, this might mean becoming more resilient, discovering new strengths, and appreciating life more, even with the challenges of caring for their child. It’s like finding better ways to cope, feeling more empathy, and finding a renewed sense of purpose along the way. This inspired me to write about my own feelings of growth and fulfilment on this journey. I’m not the same person I was twenty years ago. My son has taught me so much about life. He has taught me to be an advocate for those who do not seem to a voice in our society. He’s taught me to appreciate the beauty in small moments of time. He has taught me compassion and to see value in every aspect of life. In the same breath, he has taught me to be resilient and to have self-compassion. I can do hard things. * Seed to sapling To Oak, then log To fireplace and warmth And heat. No new beginnings Not starting over No undo’s, redo’s, try-agains. Forward Transforming Growing, changing From birth to smokey end. New beginnings never are Able to be begun Because new beginnings Never are True or new or now. Now is the end The start The middle The wax in the candle fire starter turned to liquid up the wick to flame To smoke. And even smoke Is not the end It travels, it spreads, it changes Dissipates It becomes the rain, the soil. It is the end, the middle. The seed. #poemsforhumanity #poetryforlife #naturepoets #ptsdhealing #posttraumaticgrowthandrecovery #relievingstress #natureasinspiration #winterfiresarethebest #winterfires #medicalmomlife #autismmom #ChildrenWithDisabilities #MedicallyComplex #MedicallyComplexKids #MedicallyFragile #MedicallyFragileKids #RareDisease #RareDiagnosis #SpecialNeeds #MedicalMama #autismparent #MedicalMom #RareGenes #specialneedsmom
As I watch you while you are asleep I whisper words of strength and healing, sending out prayers for your well-being and return to health. Each night may bring its own challenges, but through it all, my love for you remains unwavering. I remind myself that love transcends time and space and that our bond is unbreakable even in the face of hardships GRIEVING PROCESS #medicallycomplex #medicalmama #medicalmamalife #raredisease #livertransplant #kidneytransplant #livertransplantsurvivor #kidneytransplantrecipient #tubefeeding #SpecialNeedsJourney #medicalmomlife #raremom #medicalmomlife #specialneedsadvocate #SpecialNeedsMom #specialneedsmoms #medicalmom #parentingspecialneeds #resilientheart #littlewarrior i #methylmalonicacidemia #medicalmom #grievingprocess #grievingmother #grieveoutloud
Ok really went home this time!!! 😆 #homesweethome #medicalmomlife
Note to self: Every day is a new opportunity to start again. Get a good night’s sleep and then embrace tomorrow with hope and enthusiasm. It was a tough night last night. A never-tired boy (sigh, young man, now) who has a powerful desire to stay awake long past the time his mother would like to head to dreamland. Instead of dreamland, I lay awake listening to slamming doors and angry words as I remind him that his brothers are already in bed and everyone is trying to sleep. My thoughts take a negative turn. I’m anxious because when he’s physically tired, he is more likely to seize. I dread hearing that ominous thump followed by the heart pounding moment I jump out of bed to find him laying awkwardly on the floor, blood pooling at his mouth. Eventually he settles and once my agitation subsides, I drift off to dreamland with him. So I head into another day feeling exhausted. Yet, I remind myself that I t’s a new day. It brings hope. #specialneedsmomlife #medicalmomlife #rarediseasecommunity #dravetsyndrome #depressiontips #ChildrenWithDisabilities #MedicallyComplex #MedicallyComplexKids #MedicallyFragile #MedicallyFragileKids #RareDisease #RareDiagnosis #SpecialNeeds #MedicalMama #HospitalLife #MedicalMom #RareGenes #specialneedsmom #autismmom
GUESS WHOS GOING HOME TOMORROW!!!!?????? 🎉🎉🎉🎉🎉 #medicalmomlife #specialneedsmum #caregiving #caregiverforlife #specialneedsmom #werebustingout