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rarediseasemom I can't express how thankful I am for him. How he has changed my life and has helped me in so many ways. 
I'm seeing my geneticist now & a little nervous honestly since my heart abnormalities are caused by my VEDS.
My stomach is so distended nothing fit me this morning except for an old T-shirt I sleep in. I am in so much pain. 
#ehlersdanlossyndrome #vascularehlersdanlos #posturalorthostatictachycardiasyndrome #raredisease #rarediseasemom 
#gastroparesis #chronicpain #belgianmalinois #malinoisdog
Likes: 31
Posted at: 2019-05-31 16:39:27
I can't express how thankful I am for him. How he has changed my life and has helped me in so many ways. I'm seeing my geneticist now & a little nervous honestly since my heart abnormalities are caused by my VEDS. My stomach is so distended nothing fit me this morning except for an old T-shirt I sleep in. I am in so much pain. #ehlersdanlossyndrome #vascularehlersdanlos #posturalorthostatictachycardiasyndrome #raredisease #rarediseasemom #gastroparesis #chronicpain #belgianmalinois #malinoisdog
rarediseasemom I am *so* ready to let our voices be heard in DC. 
Who else is going?

#GastroparesisMarch #gastroparesis #raredisease #portacath #rarediseasemom #ehlersdanlossyndrome #gastroenterology #Patientsdothework
Likes: 48
Posted at: 2019-06-14 00:54:54
rarediseasemom Can we talk about joy? It's a word commonly associated with our family and our story. But what IS joy?⠀
.⠀
Having and expressing joy is not about ignoring pain or avoiding the experience of pain. ⠀
.⠀
It’s about fully absorbing our souls in the hope and promise of Jesus, even in the midst of pain and brokeness. ⠀
.⠀
When we realize what His promise holds and how the superpower of hope in Him can carry us through anything (yes, even when death is what we are up against), joy flows to the top despite our circumstances surrounding us.⠀
.⠀
This truth sinks into my soul on days I'm flying high and on days when grief and depression make me feel numb and dark. And its a truth I wrote an entire book about (coming Sept. 17) and yet am still learning it new every single day.⠀
.⠀
Thank GOD He exists beyond our emotions and circumstances, reaching intimately down into our little ole lives to gift us in such sustaining ways. 💛⠀
.⠀
.⠀
.⠀
#cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory #writersofig #author #thejourneytoadifferentkindofbrave #joy #hope #flashback #battendisease #battenwarriors #missingbig #adventuringinheaven #onedaycloser
Likes: 190
Posted at: 2019-07-04 01:12:19
Can we talk about joy? It's a word commonly associated with our family and our story. But what IS joy?⠀ .⠀ Having and expressing joy is not about ignoring pain or avoiding the experience of pain. ⠀ .⠀ It’s about fully absorbing our souls in the hope and promise of Jesus, even in the midst of pain and brokeness. ⠀ .⠀ When we realize what His promise holds and how the superpower of hope in Him can carry us through anything (yes, even when death is what we are up against), joy flows to the top despite our circumstances surrounding us.⠀ .⠀ This truth sinks into my soul on days I'm flying high and on days when grief and depression make me feel numb and dark. And its a truth I wrote an entire book about (coming Sept. 17) and yet am still learning it new every single day.⠀ .⠀ Thank GOD He exists beyond our emotions and circumstances, reaching intimately down into our little ole lives to gift us in such sustaining ways. 💛⠀ .⠀ .⠀ .⠀ #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory #writersofig #author #thejourneytoadifferentkindofbrave #joy #hope #flashback #battendisease #battenwarriors #missingbig #adventuringinheaven #onedaycloser
rarediseasemom motherhood has broken me.⠀
⠀
it has strengthened me.⠀
⠀
it has been the most holiest of honors⠀
and it has brought the worst out in me. ⠀
⠀
motherhood has been unexpected,⠀
decimating my dreams and aspirations⠀
and creating new ones even more incredible than i could imagine. ⠀
⠀
motherhood has been: ⠀
⠀
grief stricken,⠀
⠀
joy flooding,⠀
⠀
pain tearing and heart breaking,⠀
⠀
mundanely beautiful, ⠀
⠀
extraordinarily awe-filled⠀
⠀
and abounding with celebration.⠀
.⠀
.⠀
.⠀
and you, fellow mom⠀
⠀
you nod as you read, because you know this too. ⠀
your journey doesn't have to look like mine⠀
⠀
to carry both this broken and beautiful.⠀
⠀
Happy Mother's Day. 💛

#mothersday #cantstealmyjoy #momlife #griefandcelebration #painandjoy #missingbig #thisbowmanstory #hopewriters #writerlife #writinglife #battenwarrior #rarediseasemom
Likes: 149
Posted at: 2019-05-12 08:24:47
motherhood has broken me.⠀ ⠀ it has strengthened me.⠀ ⠀ it has been the most holiest of honors⠀ and it has brought the worst out in me. ⠀ ⠀ motherhood has been unexpected,⠀ decimating my dreams and aspirations⠀ and creating new ones even more incredible than i could imagine. ⠀ ⠀ motherhood has been: ⠀ ⠀ grief stricken,⠀ ⠀ joy flooding,⠀ ⠀ pain tearing and heart breaking,⠀ ⠀ mundanely beautiful, ⠀ ⠀ extraordinarily awe-filled⠀ ⠀ and abounding with celebration.⠀ .⠀ .⠀ .⠀ and you, fellow mom⠀ ⠀ you nod as you read, because you know this too. ⠀ your journey doesn't have to look like mine⠀ ⠀ to carry both this broken and beautiful.⠀ ⠀ Happy Mother's Day. 💛 #mothersday #cantstealmyjoy #momlife #griefandcelebration #painandjoy #missingbig #thisbowmanstory #hopewriters #writerlife #writinglife #battenwarrior #rarediseasemom
rarediseasemom SOS 6 with writer, Bekah Bowman  by SOS with @melissasmallwood • A podcast on Anchor⠀
Link in Bio⠀
⠀
I always say, every opportunity to share our story and put God on display is a redemptive stone laid out on our broken pathway. ⠀
//⠀
I had the awesome opportunity to be a guest on Melissa Smallwood's podcast that aired today. It was an incredible conversation and I'm thankful to have had the opportunity to do this. If you have heard bits and pieces of our story but have never heard the full timeline of it, here it is for your listening ears. ⠀
//⠀
I pray it encourages you, lifts you to hope and joy and points you to a Father who lovingly journeys to alllllll the places with us. He has faithfully prepared our hearts and has provided and continues to provide what we need to face the battles we come against.⠀
//⠀
Lifting our eyes to Him and His greater story pulls us out of the wild current of our circumstances. It is there where we can ride the storm in peace despite our fears.⠀
//⠀
Thank you Melissa for being part of God's Big Story. So glad our little stories got to collide on His timeline.💛⠀
⠀
#cantstealmyjoy #battenwarriors #rarediseasemom #thisbowmanstory #blogginglife #christianlife #christianblogger #writerlife #writinglife #podcast #hopewriterlife #hopewriters #writerscommunity #bettertogether #shareourstories #sospodcast #storytelling #tellyourstory #powerinstory
Likes: 110
Posted at: 2019-05-06 22:31:08
SOS 6 with writer, Bekah Bowman by SOS with @melissasmallwood • A podcast on Anchor⠀ Link in Bio⠀ ⠀ I always say, every opportunity to share our story and put God on display is a redemptive stone laid out on our broken pathway. ⠀ //⠀ I had the awesome opportunity to be a guest on Melissa Smallwood's podcast that aired today. It was an incredible conversation and I'm thankful to have had the opportunity to do this. If you have heard bits and pieces of our story but have never heard the full timeline of it, here it is for your listening ears. ⠀ //⠀ I pray it encourages you, lifts you to hope and joy and points you to a Father who lovingly journeys to alllllll the places with us. He has faithfully prepared our hearts and has provided and continues to provide what we need to face the battles we come against.⠀ //⠀ Lifting our eyes to Him and His greater story pulls us out of the wild current of our circumstances. It is there where we can ride the storm in peace despite our fears.⠀ //⠀ Thank you Melissa for being part of God's Big Story. So glad our little stories got to collide on His timeline.💛⠀ ⠀ #cantstealmyjoy #battenwarriors #rarediseasemom #thisbowmanstory #blogginglife #christianlife #christianblogger #writerlife #writinglife #podcast #hopewriterlife #hopewriters #writerscommunity #bettertogether #shareourstories #sospodcast #storytelling #tellyourstory #powerinstory
rarediseasemom I am a special needs mom.  The mom of 1 of the strongest little girls I have ever had the privilege to know. 
Over the last 5 years, even while focusing on my health, I have forgotten to sleep, missed meals, & stayed up for days straight to ensure she lived.  I am unable to take this burden from her, but I will do everything in my power to support her as best as I can to help her succeed. 
#raredisease #congenitalhyperinsulinism #congenitalhyperinsulinisminternational #rarediseasemom #daretoberare #specialneedsmom #momlife #zoeelizabeth #sayhitoHI
Likes: 50
Posted at: 2019-02-03 01:49:06
I am a special needs mom. The mom of 1 of the strongest little girls I have ever had the privilege to know. Over the last 5 years, even while focusing on my health, I have forgotten to sleep, missed meals, & stayed up for days straight to ensure she lived. I am unable to take this burden from her, but I will do everything in my power to support her as best as I can to help her succeed. #raredisease #congenitalhyperinsulinism #congenitalhyperinsulinisminternational #rarediseasemom #daretoberare #specialneedsmom #momlife #zoeelizabeth #sayhitoHI
rarediseasemom New blog post: link in bio::
Likes: 41
Posted at: 2019-06-22 01:24:57
New blog post: link in bio:: "This community thing has to go beyond nice exchanges with our neighbors when we are out in our driveways at the same time. It even has to go beyond sitting in church with others week to week. Community must have depth, because without depth, it slithers away as soon as life gets difficult. While we may be hurt by those who run away when life’s road gets rocky, more often than not, we push people away or isolate ourselves to the point where those around us don’t even know our struggle." - Can't Steal My Joy: The Journey to a Different Kind of Brave (publishing fall of 2019) . . . . #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory #friendship #soulfilling #friends #isolation #depression #community #bettertogether
rarediseasemom Annual exams, year two.

We got the all clear today, friends. Big man is developing normally - meeting his milestones intellectually and physically, and was HAMMING IT UP with everyone he met all afternoon. 
So. Very. Grateful.

And so very motivated to dedicate more of our lives to the #nf community.

Because, like I’ve said before, we are only one moment away from a lump in our throats, an extensive treatment plan filled with needles and surgeries and chemotherapy, a clinical trial, a lifetime of pain.

In the world of rare disease, there is no rhyme or reason to who is challenged greatly and who is “spared” from it all. And with a diagnosis of #Neurofibromatosis which can literally manifest in hundreds of ways, there is no telling what the future may bring.

And because I know that I am one moment away from losing my breath in a doctor’s words, one moment away from seeing my child in pain - and that there are thousands of other parents and patients who have already lived that moment - we continue to dedicate and live a large part of our lives to advocate for our NF family. 
THANK YOU to each and every one of our family and friends who have expressed concern and offered prayers and thoughts upwards in honor of Nico. We feel that love. But know that the work is not over. There are other sons and daughters who are just as amazing as ours who did not walk out of their annual appointments with smiles on their faces. There are countless others who searching for clinical trials to participate in in the hopes of finding some relief. Adults who would rather stay home than be in public for fear of what might happen. Sweet babes who are struggling with feeding tubes because they are nauseous from their chemotherapy regimens. Moms and dads who are poring over online journal articles right now searching for answers for their child. We continue to work for them, and hope that you will too. ♥️ .
#raredisease #mom #momlife #rarediseasemom #nord #ctf #nfnetwork #mayoclinic #grateful #parenting #advocate #love #family #mindfulparenting #son #thankful #mama #lifestyle #
Likes: 65
Posted at: 2018-12-21 05:29:44
Annual exams, year two. We got the all clear today, friends. Big man is developing normally - meeting his milestones intellectually and physically, and was HAMMING IT UP with everyone he met all afternoon. So. Very. Grateful. And so very motivated to dedicate more of our lives to the #nf community. Because, like I’ve said before, we are only one moment away from a lump in our throats, an extensive treatment plan filled with needles and surgeries and chemotherapy, a clinical trial, a lifetime of pain. In the world of rare disease, there is no rhyme or reason to who is challenged greatly and who is “spared” from it all. And with a diagnosis of #Neurofibromatosis which can literally manifest in hundreds of ways, there is no telling what the future may bring. And because I know that I am one moment away from losing my breath in a doctor’s words, one moment away from seeing my child in pain - and that there are thousands of other parents and patients who have already lived that moment - we continue to dedicate and live a large part of our lives to advocate for our NF family. THANK YOU to each and every one of our family and friends who have expressed concern and offered prayers and thoughts upwards in honor of Nico. We feel that love. But know that the work is not over. There are other sons and daughters who are just as amazing as ours who did not walk out of their annual appointments with smiles on their faces. There are countless others who searching for clinical trials to participate in in the hopes of finding some relief. Adults who would rather stay home than be in public for fear of what might happen. Sweet babes who are struggling with feeding tubes because they are nauseous from their chemotherapy regimens. Moms and dads who are poring over online journal articles right now searching for answers for their child. We continue to work for them, and hope that you will too. ♥️ . #raredisease #mom #momlife #rarediseasemom #nord #ctf #nfnetwork #mayoclinic #grateful #parenting #advocate #love #family #mindfulparenting #son #thankful #mama #lifestyle #
rarediseasemom I watched my daughter sit calmly today while a nurse inserted an IV after Lauren told her, very matter of factly, where she would prefer to have it placed. I reflected on this tonight while sitting across from her and enjoying ice cream together. This kid is tough as nails, and she is sweet, kind, empathetic....and still a child. One who never should have had to learn to be tough.

A rare disease diagnosis sure has a way of changing everything. One moment you're just going along blissfully and the next you're in a hospital room and a doctor seems to be speaking a different language to you. Gradually you learn that language. You begin to understand. And then you get angry, and you rage against the world, you have complete breakdowns....grief and a sense of loss as you see your child's life change is profound. Eventually it gets a little easier. You turn into a researcher, an advocate. You become that parent that helps other parents that are just beginning this (totally f'd up) journey. You cope, you start embracing every day because you truly understand that tomorrow isn't guaranteed. You're able to smile and have hope.

And then you find yourself sitting across from your beautiful daughter, looking at my favorite set of brown eyes, watching her eat her ice cream. It's those moments that sneak up on you and the pain and fear rush in. I sat there, fighting the tears that were threatening to fall. I succeeded. I saved them for a dark room while my sweet girl sleeps to the sound of rain coming from her phone. Every so often you have to give in to the pain or else it'll eat you up, it'll turn you into someone you don't want to be. Just don't give in while you're having ice cream.
Likes: 71
Posted at: 2018-10-23 08:20:57
I watched my daughter sit calmly today while a nurse inserted an IV after Lauren told her, very matter of factly, where she would prefer to have it placed. I reflected on this tonight while sitting across from her and enjoying ice cream together. This kid is tough as nails, and she is sweet, kind, empathetic....and still a child. One who never should have had to learn to be tough. A rare disease diagnosis sure has a way of changing everything. One moment you're just going along blissfully and the next you're in a hospital room and a doctor seems to be speaking a different language to you. Gradually you learn that language. You begin to understand. And then you get angry, and you rage against the world, you have complete breakdowns....grief and a sense of loss as you see your child's life change is profound. Eventually it gets a little easier. You turn into a researcher, an advocate. You become that parent that helps other parents that are just beginning this (totally f'd up) journey. You cope, you start embracing every day because you truly understand that tomorrow isn't guaranteed. You're able to smile and have hope. And then you find yourself sitting across from your beautiful daughter, looking at my favorite set of brown eyes, watching her eat her ice cream. It's those moments that sneak up on you and the pain and fear rush in. I sat there, fighting the tears that were threatening to fall. I succeeded. I saved them for a dark room while my sweet girl sleeps to the sound of rain coming from her phone. Every so often you have to give in to the pain or else it'll eat you up, it'll turn you into someone you don't want to be. Just don't give in while you're having ice cream.
rarediseasemom Can we talk about joy? It's a word commonly associated with our family and our story. But what IS joy?⠀
.⠀
Having and expressing joy is not about ignoring pain or avoiding the experience of pain. ⠀
.⠀
It’s about fully absorbing our souls in the hope and promise of Jesus, even in the midst of pain and brokeness. ⠀
.⠀
When we realize what His promise holds and how the superpower of hope in Him can carry us through anything (yes, even when death is what we are up against), joy flows to the top despite our circumstances surrounding us.⠀
.⠀
This truth sinks into my soul on days I'm flying high and on days when grief and depression make me feel numb and dark. And its a truth I wrote an entire book about (coming Sept. 17) and yet am still learning it new every single day.⠀
.⠀
Thank GOD He exists beyond our emotions and circumstances, reaching intimately down into our little ole lives to gift us in such sustaining ways. 💛⠀
.⠀
.⠀
.⠀
#cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory #writersofig #author #thejourneytoadifferentkindofbrave #joy #hope #flashback #battendisease #battenwarriors #missingbig #adventuringinheaven #onedaycloser
Likes: 190
Posted at: 2019-07-04 01:12:19
Can we talk about joy? It's a word commonly associated with our family and our story. But what IS joy?⠀ .⠀ Having and expressing joy is not about ignoring pain or avoiding the experience of pain. ⠀ .⠀ It’s about fully absorbing our souls in the hope and promise of Jesus, even in the midst of pain and brokeness. ⠀ .⠀ When we realize what His promise holds and how the superpower of hope in Him can carry us through anything (yes, even when death is what we are up against), joy flows to the top despite our circumstances surrounding us.⠀ .⠀ This truth sinks into my soul on days I'm flying high and on days when grief and depression make me feel numb and dark. And its a truth I wrote an entire book about (coming Sept. 17) and yet am still learning it new every single day.⠀ .⠀ Thank GOD He exists beyond our emotions and circumstances, reaching intimately down into our little ole lives to gift us in such sustaining ways. 💛⠀ .⠀ .⠀ .⠀ #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory #writersofig #author #thejourneytoadifferentkindofbrave #joy #hope #flashback #battendisease #battenwarriors #missingbig #adventuringinheaven #onedaycloser
rarediseasemom New blog post: link in bio::
Likes: 41
Posted at: 2019-06-22 01:24:57
New blog post: link in bio:: "This community thing has to go beyond nice exchanges with our neighbors when we are out in our driveways at the same time. It even has to go beyond sitting in church with others week to week. Community must have depth, because without depth, it slithers away as soon as life gets difficult. While we may be hurt by those who run away when life’s road gets rocky, more often than not, we push people away or isolate ourselves to the point where those around us don’t even know our struggle." - Can't Steal My Joy: The Journey to a Different Kind of Brave (publishing fall of 2019) . . . . #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory #friendship #soulfilling #friends #isolation #depression #community #bettertogether
rarediseasemom It felt weird to write it- a story that wasn't even finished yet. But if we didn't share our stories in the midst of them and waited instead for them to be finished, we wouldn't be around to do the telling. And perhaps we'd miss out on the invitation to step into His Big Story right here, right now in the messy, unfinished pages. ⠀
.⠀
So I wrote. And it's coming Sept 17... a little story glimpse into a Big Story God who, in the midst of our broken places, promises you and I enduring truth and hope that cannot disappoint. ⠀
.⠀
If you want to stay updated on the release of the book, Can't Steal My Joy: The Journey to a Different Kind of Brave, sign up for my newsletter- link in bio. www.cantstealmyjoy.com .⠀
.⠀
.⠀
.⠀
.⠀
#cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory
Likes: 96
Posted at: 2019-06-17 16:41:59
It felt weird to write it- a story that wasn't even finished yet. But if we didn't share our stories in the midst of them and waited instead for them to be finished, we wouldn't be around to do the telling. And perhaps we'd miss out on the invitation to step into His Big Story right here, right now in the messy, unfinished pages. ⠀ .⠀ So I wrote. And it's coming Sept 17... a little story glimpse into a Big Story God who, in the midst of our broken places, promises you and I enduring truth and hope that cannot disappoint. ⠀ .⠀ If you want to stay updated on the release of the book, Can't Steal My Joy: The Journey to a Different Kind of Brave, sign up for my newsletter- link in bio. www.cantstealmyjoy.com .⠀ .⠀ .⠀ .⠀ .⠀ #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #hopewriters #hopewriterlife #thisbowmanstory #tellingourstory #tellyourstory #storytelling #faith #theBigGodStory #christianlife #christianliving #amwriting #inspiration #memoirchat #instastory
rarediseasemom I am *so* ready to let our voices be heard in DC. 
Who else is going?

#GastroparesisMarch #gastroparesis #raredisease #portacath #rarediseasemom #ehlersdanlossyndrome #gastroenterology #Patientsdothework
Likes: 48
Posted at: 2019-06-14 00:54:54
rarediseasemom Another 4 a.m wake up call my body isn’t ready for. I get up to meet my wide-awake son in the hallway. My head is spinning I’m so tired. I let everyone know if they only want ‘half a mama’ to continue to keep this up. I situate my little one with his breakfast and a Little Einstein episode and declare to anyone listening it’s time for mommy to go get an attitude adjustment.⠀
.⠀
I sit down, journal in hand, tears slipping down my face. I didn’t even know I was crying until I felt them. Sometimes they just appear like that. Weariness leaking out, I suppose. I sit to write, looking for what is in my soul that needs to be heard.⠀
.⠀
I write I. AM. SO. TIRED.⠀
SO. TIRED.⠀
I. AM.⠀
“I. AM. ” Says God, a gentle reminder.⠀
“I. AM. in your weary state.”⠀
“I. AM. in disease progression.”⠀
“I. AM. in your guilt, anger and meltdowns.”⠀
“I. AM. in the midst of your aching missing.”⠀
“I. AM. in the center of your questioning.”⠀
“I. AM. before, here and now, and forever.”⠀
“I. AM. and will not change.”⠀
“I. AM. victory and redemption.”⠀
“I. AM. here, yours, ENOUGH.”⠀
.⠀
My perspective is taken back to clarity. My blinders lifted – My Jesus eyes on. I can see His glorious, unlimited resources. His sustaining love that has made it’s home in me and taught me over and over I can trust His love. I am reminded of how high, wide, and deep His love is. And how deep His love-roots have grown down in me to give me strength. I am reminded He is at work within us always and has been for generations and generations. ⠀
.⠀
I Am. Fullness complete for you and I, nothing less and nothing more we could possibly add. I Am wraps up our brokenness and calls it redeemed- declares victory even as we live in the middle of the battle. For that, we are gifted resolve. To keep on keeping on. Not in senseless drudgery, but in Joyous Victory.⠀
I am thankful for this gentle reminder turned monumental perspective shift. I am still tired. But I am His and He is I Am. So I cling again to the One who is the Vine. The Bread of Life, the First and the Last. The Way, the Truth and the Life. I. AM.⠀
#hopewriters #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #faith #storytelling
Likes: 49
Posted at: 2019-06-11 23:04:00
Another 4 a.m wake up call my body isn’t ready for. I get up to meet my wide-awake son in the hallway. My head is spinning I’m so tired. I let everyone know if they only want ‘half a mama’ to continue to keep this up. I situate my little one with his breakfast and a Little Einstein episode and declare to anyone listening it’s time for mommy to go get an attitude adjustment.⠀ .⠀ I sit down, journal in hand, tears slipping down my face. I didn’t even know I was crying until I felt them. Sometimes they just appear like that. Weariness leaking out, I suppose. I sit to write, looking for what is in my soul that needs to be heard.⠀ .⠀ I write I. AM. SO. TIRED.⠀ SO. TIRED.⠀ I. AM.⠀ “I. AM. ” Says God, a gentle reminder.⠀ “I. AM. in your weary state.”⠀ “I. AM. in disease progression.”⠀ “I. AM. in your guilt, anger and meltdowns.”⠀ “I. AM. in the midst of your aching missing.”⠀ “I. AM. in the center of your questioning.”⠀ “I. AM. before, here and now, and forever.”⠀ “I. AM. and will not change.”⠀ “I. AM. victory and redemption.”⠀ “I. AM. here, yours, ENOUGH.”⠀ .⠀ My perspective is taken back to clarity. My blinders lifted – My Jesus eyes on. I can see His glorious, unlimited resources. His sustaining love that has made it’s home in me and taught me over and over I can trust His love. I am reminded of how high, wide, and deep His love is. And how deep His love-roots have grown down in me to give me strength. I am reminded He is at work within us always and has been for generations and generations. ⠀ .⠀ I Am. Fullness complete for you and I, nothing less and nothing more we could possibly add. I Am wraps up our brokenness and calls it redeemed- declares victory even as we live in the middle of the battle. For that, we are gifted resolve. To keep on keeping on. Not in senseless drudgery, but in Joyous Victory.⠀ I am thankful for this gentle reminder turned monumental perspective shift. I am still tired. But I am His and He is I Am. So I cling again to the One who is the Vine. The Bread of Life, the First and the Last. The Way, the Truth and the Life. I. AM.⠀ #hopewriters #cantstealmyjoy #christianblogger #rarediseasemom #writerlife #writinglife #faith #storytelling
rarediseasemom ~Can't Steal My Joy: The Journey to a Different Kind of Brave - COMING SEPT 17! Sign up at #linkinbio to receive book updates and know when its ready for purchase.💛 ~~~~~~~~⠀
.⠀
.⠀
.⠀
Welcome to the garden.⠀
~⠀
Some days we feel the perfection of sunshine and a light breeze. Other days hold wet, gray skies that pour down vengeance and drowning grief. In the wake of it comes promise of new growth. Still other days a cold winter frost catches us by surprise halting us on our journey toward fruitful blooms. We step back, reeling at the damage this cold frost has caused. We question the system in which we grow and the environment we were placed in to begin with.⠀
~⠀
We can choose to exist in this garden dictated by the changing weather patterns. Or, we can choose to see a different kind of brave living – that which exists beyond our fragile stems and dainty leaves, living instead deep down in our roots.⠀
~⠀
The day Bekah and her husband learned not just one, but both their boys were diagnosed with a rare, fatal disease, she was left with crippled leaves beaten by grief and a stem of life that no longer felt sustainable. Join her as she invites you into these vulnerable places to discover beauty and redemption in her ugly and broken. May you discover the Life-Giver of Joy, see your beautiful bloom, and know that hope is always worth holding on to because redemption is coming – and in fact – is already happening here and now.⠀
~⠀
#christianblogger #christianlife #christianliving #christianwriter #faith #inspy #christianreading #amwriting #writerslife #MemoirChat #tellyourstory #instastory #storytelling #hopewriterlife #hopewriters #cantstealmyjoy #author #debutbook #instagood #rarediseasemom #bookcover #comingsoon
Likes: 153
Posted at: 2019-06-05 15:13:36
~Can't Steal My Joy: The Journey to a Different Kind of Brave - COMING SEPT 17! Sign up at #linkinbio to receive book updates and know when its ready for purchase.💛 ~~~~~~~~⠀ .⠀ .⠀ .⠀ Welcome to the garden.⠀ ~⠀ Some days we feel the perfection of sunshine and a light breeze. Other days hold wet, gray skies that pour down vengeance and drowning grief. In the wake of it comes promise of new growth. Still other days a cold winter frost catches us by surprise halting us on our journey toward fruitful blooms. We step back, reeling at the damage this cold frost has caused. We question the system in which we grow and the environment we were placed in to begin with.⠀ ~⠀ We can choose to exist in this garden dictated by the changing weather patterns. Or, we can choose to see a different kind of brave living – that which exists beyond our fragile stems and dainty leaves, living instead deep down in our roots.⠀ ~⠀ The day Bekah and her husband learned not just one, but both their boys were diagnosed with a rare, fatal disease, she was left with crippled leaves beaten by grief and a stem of life that no longer felt sustainable. Join her as she invites you into these vulnerable places to discover beauty and redemption in her ugly and broken. May you discover the Life-Giver of Joy, see your beautiful bloom, and know that hope is always worth holding on to because redemption is coming – and in fact – is already happening here and now.⠀ ~⠀ #christianblogger #christianlife #christianliving #christianwriter #faith #inspy #christianreading #amwriting #writerslife #MemoirChat #tellyourstory #instastory #storytelling #hopewriterlife #hopewriters #cantstealmyjoy #author #debutbook #instagood #rarediseasemom #bookcover #comingsoon
rarediseasemom I can't express how thankful I am for him. How he has changed my life and has helped me in so many ways. 
I'm seeing my geneticist now & a little nervous honestly since my heart abnormalities are caused by my VEDS.
My stomach is so distended nothing fit me this morning except for an old T-shirt I sleep in. I am in so much pain. 
#ehlersdanlossyndrome #vascularehlersdanlos #posturalorthostatictachycardiasyndrome #raredisease #rarediseasemom 
#gastroparesis #chronicpain #belgianmalinois #malinoisdog
Likes: 31
Posted at: 2019-05-31 16:39:27
I can't express how thankful I am for him. How he has changed my life and has helped me in so many ways. I'm seeing my geneticist now & a little nervous honestly since my heart abnormalities are caused by my VEDS. My stomach is so distended nothing fit me this morning except for an old T-shirt I sleep in. I am in so much pain. #ehlersdanlossyndrome #vascularehlersdanlos #posturalorthostatictachycardiasyndrome #raredisease #rarediseasemom #gastroparesis #chronicpain #belgianmalinois #malinoisdog
rarediseasemom 9 years ago we were brand new parents. Love made a way through our sleep deprived existence and carved out some of the most precious, and intimate moments.
💛
It's not that we had a list of things we thought this little man would accomplish. We entered parenthood ready to embrace who God made our child to be and dedicated to set his sails in the direction of Jesus. But I did expect life to go a definite general direction. I wouldn't have used the descripter word
Likes: 234
Posted at: 2019-05-29 04:56:13
9 years ago we were brand new parents. Love made a way through our sleep deprived existence and carved out some of the most precious, and intimate moments. 💛 It's not that we had a list of things we thought this little man would accomplish. We entered parenthood ready to embrace who God made our child to be and dedicated to set his sails in the direction of Jesus. But I did expect life to go a definite general direction. I wouldn't have used the descripter word "normal" to define that general direction, but rather just, ya know, "life". I didn't know a life that went any other way. But then it did. 💛 Today, my heart longs to be celebrating face to face, a nine year old boy who quite possibly could've passed his mama up in height by now. A boy who was the spitting image of his handsome daddy from day 1. 💛 We celebrate him today in a different kind of way on a journey we've learned to live with a different kind of brave. The kind of brave you experience when circumstances spiral out of control and you can still choose life. On that note: today we revealed the cover of my debut book, coming out this fall! Thank you Jesus for meeting us in the middle of broken and showing us the way of joy. #thisbowmanstory #cantstealmyjoy #adifferentkindofbrave #hopewriters #hopewriterlife #writerlife #writinglife #faith #memoir #instastory #christianlife #christianblogger #rarediseasemom #bookcoverreveal
rarediseasemom motherhood has broken me.⠀
⠀
it has strengthened me.⠀
⠀
it has been the most holiest of honors⠀
and it has brought the worst out in me. ⠀
⠀
motherhood has been unexpected,⠀
decimating my dreams and aspirations⠀
and creating new ones even more incredible than i could imagine. ⠀
⠀
motherhood has been: ⠀
⠀
grief stricken,⠀
⠀
joy flooding,⠀
⠀
pain tearing and heart breaking,⠀
⠀
mundanely beautiful, ⠀
⠀
extraordinarily awe-filled⠀
⠀
and abounding with celebration.⠀
.⠀
.⠀
.⠀
and you, fellow mom⠀
⠀
you nod as you read, because you know this too. ⠀
your journey doesn't have to look like mine⠀
⠀
to carry both this broken and beautiful.⠀
⠀
Happy Mother's Day. 💛

#mothersday #cantstealmyjoy #momlife #griefandcelebration #painandjoy #missingbig #thisbowmanstory #hopewriters #writerlife #writinglife #battenwarrior #rarediseasemom
Likes: 149
Posted at: 2019-05-12 08:24:47
motherhood has broken me.⠀ ⠀ it has strengthened me.⠀ ⠀ it has been the most holiest of honors⠀ and it has brought the worst out in me. ⠀ ⠀ motherhood has been unexpected,⠀ decimating my dreams and aspirations⠀ and creating new ones even more incredible than i could imagine. ⠀ ⠀ motherhood has been: ⠀ ⠀ grief stricken,⠀ ⠀ joy flooding,⠀ ⠀ pain tearing and heart breaking,⠀ ⠀ mundanely beautiful, ⠀ ⠀ extraordinarily awe-filled⠀ ⠀ and abounding with celebration.⠀ .⠀ .⠀ .⠀ and you, fellow mom⠀ ⠀ you nod as you read, because you know this too. ⠀ your journey doesn't have to look like mine⠀ ⠀ to carry both this broken and beautiful.⠀ ⠀ Happy Mother's Day. 💛 #mothersday #cantstealmyjoy #momlife #griefandcelebration #painandjoy #missingbig #thisbowmanstory #hopewriters #writerlife #writinglife #battenwarrior #rarediseasemom
rarediseasemom SOS 6 with writer, Bekah Bowman  by SOS with @melissasmallwood • A podcast on Anchor⠀
Link in Bio⠀
⠀
I always say, every opportunity to share our story and put God on display is a redemptive stone laid out on our broken pathway. ⠀
//⠀
I had the awesome opportunity to be a guest on Melissa Smallwood's podcast that aired today. It was an incredible conversation and I'm thankful to have had the opportunity to do this. If you have heard bits and pieces of our story but have never heard the full timeline of it, here it is for your listening ears. ⠀
//⠀
I pray it encourages you, lifts you to hope and joy and points you to a Father who lovingly journeys to alllllll the places with us. He has faithfully prepared our hearts and has provided and continues to provide what we need to face the battles we come against.⠀
//⠀
Lifting our eyes to Him and His greater story pulls us out of the wild current of our circumstances. It is there where we can ride the storm in peace despite our fears.⠀
//⠀
Thank you Melissa for being part of God's Big Story. So glad our little stories got to collide on His timeline.💛⠀
⠀
#cantstealmyjoy #battenwarriors #rarediseasemom #thisbowmanstory #blogginglife #christianlife #christianblogger #writerlife #writinglife #podcast #hopewriterlife #hopewriters #writerscommunity #bettertogether #shareourstories #sospodcast #storytelling #tellyourstory #powerinstory
Likes: 110
Posted at: 2019-05-06 22:31:08
SOS 6 with writer, Bekah Bowman by SOS with @melissasmallwood • A podcast on Anchor⠀ Link in Bio⠀ ⠀ I always say, every opportunity to share our story and put God on display is a redemptive stone laid out on our broken pathway. ⠀ //⠀ I had the awesome opportunity to be a guest on Melissa Smallwood's podcast that aired today. It was an incredible conversation and I'm thankful to have had the opportunity to do this. If you have heard bits and pieces of our story but have never heard the full timeline of it, here it is for your listening ears. ⠀ //⠀ I pray it encourages you, lifts you to hope and joy and points you to a Father who lovingly journeys to alllllll the places with us. He has faithfully prepared our hearts and has provided and continues to provide what we need to face the battles we come against.⠀ //⠀ Lifting our eyes to Him and His greater story pulls us out of the wild current of our circumstances. It is there where we can ride the storm in peace despite our fears.⠀ //⠀ Thank you Melissa for being part of God's Big Story. So glad our little stories got to collide on His timeline.💛⠀ ⠀ #cantstealmyjoy #battenwarriors #rarediseasemom #thisbowmanstory #blogginglife #christianlife #christianblogger #writerlife #writinglife #podcast #hopewriterlife #hopewriters #writerscommunity #bettertogether #shareourstories #sospodcast #storytelling #tellyourstory #powerinstory
rarediseasemom Today is the day to put yourself first. Caregivers play the long game and we need the stamina. You're worth it. 👍 #selfcareplan #caringforcaregivers #caregiversrock #selfcareroutine #selfcaretips #specialneedsmoms #specialneedsfamily #rarediseasemom #optimisticmom
Likes: 9
Posted at: 2019-04-05 01:59:25
Today is the day to put yourself first. Caregivers play the long game and we need the stamina. You're worth it. 👍 #selfcareplan #caringforcaregivers #caregiversrock #selfcareroutine #selfcaretips #specialneedsmoms #specialneedsfamily #rarediseasemom #optimisticmom
rarediseasemom I just ate lunch sitting outside and it is a beautiful day. I'm listening to a podcast and enjoying some time outside & waiting on my kiddo to get his shoes on. We're going to go for a walk & a scavenger hunt today! Pain will not bring me down today.
Follow me on Twitter @wethepeoplehope 
#beautiful #politicalpodcast #homeschool #autismmom #rarediseasemom #raredisease #portacath #ehlersdanlossyndrome #gastroparesis #dysautonomia #crps #sfn
Likes: 43
Posted at: 2019-04-04 18:03:13
I just ate lunch sitting outside and it is a beautiful day. I'm listening to a podcast and enjoying some time outside & waiting on my kiddo to get his shoes on. We're going to go for a walk & a scavenger hunt today! Pain will not bring me down today. Follow me on Twitter @wethepeoplehope #beautiful #politicalpodcast #homeschool #autismmom #rarediseasemom #raredisease #portacath #ehlersdanlossyndrome #gastroparesis #dysautonomia #crps #sfn
rarediseasemom If you see a Mom promoting a product that she loves on social media, chances are there is a BIG REASON WHY ... and it usually has very little to do her goals for selling.

This boy right here is my why. My son has a rare genetic disorder called Hemophilia. It requires regular infusions of an expensive medication + can involve a lot of time in the hospital. Being able to stay at home with him and have a schedule that allows me to be accessible in a moment's notice is essential to me. So is contributing to the large ongoing expense that his condition carries. Sharing fantastic activewear with you allows me the ability to do that.

So if you're taking a look, double tapping to show you're support, or making a purchase - just know that you're a part of something much bigger than that. 💛
.
.
You can shop it or join me to share it 👉 myZyia.com/lindygault
Likes: 25
Posted at: 2019-04-01 15:03:55
If you see a Mom promoting a product that she loves on social media, chances are there is a BIG REASON WHY ... and it usually has very little to do her goals for selling. This boy right here is my why. My son has a rare genetic disorder called Hemophilia. It requires regular infusions of an expensive medication + can involve a lot of time in the hospital. Being able to stay at home with him and have a schedule that allows me to be accessible in a moment's notice is essential to me. So is contributing to the large ongoing expense that his condition carries. Sharing fantastic activewear with you allows me the ability to do that. So if you're taking a look, double tapping to show you're support, or making a purchase - just know that you're a part of something much bigger than that. 💛 . . You can shop it or join me to share it 👉 myZyia.com/lindygault
rarediseasemom I love a craft that can go wherever I go!

#TherapyTime
#AquaTherapy
#RareDiseaseMom
#LoomKnitting
#HospitalHats
#CraftingIsMyTherapy
#DailyKnitter
Likes: 13
Posted at: 2019-03-30 01:20:41
rarediseasemom My memories popped up, reminding me of a treasured moment. We had just pulled into the garage on a very rainy mid-western day. I got two-year-old Titus out of the car and instructed him to head to the door to go inside. He gave me that look. The one with one eyebrow half-raised, eyes bright and mischevious and he darted the exact opposite direction out to the rain. ~ 
My first reaction was to stand at the edge of the garage, still sheltered by the rain and order him to come back. As I was calling his name about to ask him to get back in the garage (right this minute), my eyes saw joy illuminating from my son's uplifted face. There was something about it. Something irresistible, something life-giving and life-daring. ~ 
His giggles dared me to put my comfort aside, to take a chance, to let go of needing everything to be
Likes: 160
Posted at: 2019-03-28 01:47:04
My memories popped up, reminding me of a treasured moment. We had just pulled into the garage on a very rainy mid-western day. I got two-year-old Titus out of the car and instructed him to head to the door to go inside. He gave me that look. The one with one eyebrow half-raised, eyes bright and mischevious and he darted the exact opposite direction out to the rain. ~ My first reaction was to stand at the edge of the garage, still sheltered by the rain and order him to come back. As I was calling his name about to ask him to get back in the garage (right this minute), my eyes saw joy illuminating from my son's uplifted face. There was something about it. Something irresistible, something life-giving and life-daring. ~ His giggles dared me to put my comfort aside, to take a chance, to let go of needing everything to be "just so", and to dare to step out. ~ In a moment I went from standing in a protected garage to running into the wide open sky pouring down to meet my son in the driveway. We silly danced, got soaking wet and experienced the goodness of Christ as he poured out his joy on us. ~ This picture underneath that memory-reminder is after Batten disease progressed so much in him. But nothing could take that joy that was so much of who my son had always been. I'm reminded today of these precious moments that teach us and fill us up if we just pay attention to them. They are lasting life lessons daring us to do life in a different kind of way. A joy-filled way. #thisbowmanstory #cantstealmyjoy #liveinthemoment #everydaymoments #joyfilledmoments #giftofjoy #team4titusely #battenwarrior #danceintherain #writer #writerlife #hopewriterlife #hopewriters #writinglife #faith #christianlife #christianblogger #rarediseasemom
rarediseasemom You guys!! I am 10 days shy from being a Mom for 21 years. 
Holy shit! That seems like a long freakin’ time! Lol.. As,most of you know, in those 21 year, I’ve been blessed with 4 beautiful and amazing kiddos. •
Here’s some perspective... I have birthed a child in every decade and two in my twenties and collectively nursed said children for 9 years!!! •
In those same years... I have been divorced, became a 100% single parent to 2 of my 4 babes, been team mom, room mom,PTA mom, worked at a school, volunteered, and most recently a home school mom. •
Yet, never, have I ever, not even once in those 21yrs been a mom who took care of herself, put herself first, her own needs above her children. Especially, not my fitness or meals. It was easier to buy the latest pills or get injections in my rear..! •
If you know me, you know those 4 babes will always be the reason I live, they’re my world!! However - they will no longer be my entire world!! I’m SO EXCITED to say, after 6 long years of excuses and FEAR of failure - I have finally put myself and my health FIRST and  became a Beachbody Coach!!!
•
 It is now time for me to hold myself accountable, in the hardest way ever,for me. Sharing here on social media - MY OWN - health, fitness and personal growth journey - to be the best woman,mom and human I can possibly be, to give my family the financial freedom - to not live paycheck to paycheck.... More importantly - when I  help change lives, inspire women and men to love themselves and make their health a priority.. then GOAL ACHIEVED ✨
•
Y’all, I will be 59 years old when my little graduates HS and most likely a grandma! Hold on - give me a sec. let me let that sink in a bit 😂👵🏼 But, seriously, I will be one badass fit mom/grandma!! I’d love it if you’d follow me on this new exciting journey, both here and IG @one_lovex4 and if you want to join in my next boot camp or as a business partner, I’d be THRILLED to have you!! Come kick some ass with me ~ XO 🖤😘
Likes: 77
Posted at: 2019-03-27 05:45:57
You guys!! I am 10 days shy from being a Mom for 21 years. Holy shit! That seems like a long freakin’ time! Lol.. As,most of you know, in those 21 year, I’ve been blessed with 4 beautiful and amazing kiddos. • Here’s some perspective... I have birthed a child in every decade and two in my twenties and collectively nursed said children for 9 years!!! • In those same years... I have been divorced, became a 100% single parent to 2 of my 4 babes, been team mom, room mom,PTA mom, worked at a school, volunteered, and most recently a home school mom. • Yet, never, have I ever, not even once in those 21yrs been a mom who took care of herself, put herself first, her own needs above her children. Especially, not my fitness or meals. It was easier to buy the latest pills or get injections in my rear..! • If you know me, you know those 4 babes will always be the reason I live, they’re my world!! However - they will no longer be my entire world!! I’m SO EXCITED to say, after 6 long years of excuses and FEAR of failure - I have finally put myself and my health FIRST and became a Beachbody Coach!!! • It is now time for me to hold myself accountable, in the hardest way ever,for me. Sharing here on social media - MY OWN - health, fitness and personal growth journey - to be the best woman,mom and human I can possibly be, to give my family the financial freedom - to not live paycheck to paycheck.... More importantly - when I help change lives, inspire women and men to love themselves and make their health a priority.. then GOAL ACHIEVED ✨ • Y’all, I will be 59 years old when my little graduates HS and most likely a grandma! Hold on - give me a sec. let me let that sink in a bit 😂👵🏼 But, seriously, I will be one badass fit mom/grandma!! I’d love it if you’d follow me on this new exciting journey, both here and IG @one_lovex4 and if you want to join in my next boot camp or as a business partner, I’d be THRILLED to have you!! Come kick some ass with me ~ XO 🖤😘
rarediseasemom When is the last time you really took a good, long look at yourself?
.
No filter. No makeup. Just Y O U.
.
Don’t get me wrong, ya girl loves a bold lip, a nice contour & a bomb filter. I am not shaming those at all. Glam to the Max & bare to the skin are both just as beautiful. I prefer both, depending on the day.
.
But when you take it all off, do you love you? 
Do you embrace you?
.
Your body. Your face. They have been through some tough shit. Yet, somehow.. here you are.
.
You are beautiful..
every freckle 
every curve
every wrinkle
every stretch mark
every scar
every flaw 
every single inch of you.
.
Take it all off. Look in the mirror.
Say, “I am BEAUTIFUL.”
Now believe it.. Because you are.
Likes: 46
Posted at: 2019-03-19 22:43:58
When is the last time you really took a good, long look at yourself? . No filter. No makeup. Just Y O U. . Don’t get me wrong, ya girl loves a bold lip, a nice contour & a bomb filter. I am not shaming those at all. Glam to the Max & bare to the skin are both just as beautiful. I prefer both, depending on the day. . But when you take it all off, do you love you? Do you embrace you? . Your body. Your face. They have been through some tough shit. Yet, somehow.. here you are. . You are beautiful.. every freckle every curve every wrinkle every stretch mark every scar every flaw every single inch of you. . Take it all off. Look in the mirror. Say, “I am BEAUTIFUL.” Now believe it.. Because you are.
rarediseasemom Everything is better with friends!

Katie and I have something pretty unique in common - both of our sons have rare genetic disorders and their diagnoses came almost 2 years to the day apart.

Having a child with a rare disease changes everything. For both of us, it changed our ability to work and, for quite a while, our desire to do much of anything for ourselves as we focused on caring for our sons.

But when the opportunity to be rewarded for doing something as simple and fun as sharing activewear with friends came along, we both knew it was worth considering.

Here's what we found it could be...
👉 A source of income that doesn't require us to be away from our child or home.
👉Something light-hearted and fun we can do with friends!
👉A SIMPLE business that doesn't require tons of time or additional effort.
👉A way to save money on clothes we live in.
👉A blessing to us, our families, and the people we serve.

It's only been a few short weeks since we decided to jump in together but it's proven to be all those things and more. Thank you, Zyia for this opportunity. We are so excited to be part of it and to share the blessing with others!

If you're a mom who needs the things on that list above - I'd love to share this blessing with you as well.
Likes: 20
Posted at: 2019-03-12 04:35:29
Everything is better with friends! Katie and I have something pretty unique in common - both of our sons have rare genetic disorders and their diagnoses came almost 2 years to the day apart. Having a child with a rare disease changes everything. For both of us, it changed our ability to work and, for quite a while, our desire to do much of anything for ourselves as we focused on caring for our sons. But when the opportunity to be rewarded for doing something as simple and fun as sharing activewear with friends came along, we both knew it was worth considering. Here's what we found it could be... 👉 A source of income that doesn't require us to be away from our child or home. 👉Something light-hearted and fun we can do with friends! 👉A SIMPLE business that doesn't require tons of time or additional effort. 👉A way to save money on clothes we live in. 👉A blessing to us, our families, and the people we serve. It's only been a few short weeks since we decided to jump in together but it's proven to be all those things and more. Thank you, Zyia for this opportunity. We are so excited to be part of it and to share the blessing with others! If you're a mom who needs the things on that list above - I'd love to share this blessing with you as well.
rarediseasemom Whose excited for deloittes half marathon!!! .
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.
.
.
#haileyshalo #brooksrunning #rarediseaseactivist #thule #raredisease #rarediseasessa #tuberoussclerosiscomplex #rarewarrior #rarediseasemom #momsrunningbuddy #watchmommyrun #runforrare #rarediseaseactivist #careforrare
Likes: 29
Posted at: 2019-03-06 11:15:09
rarediseasemom Thanks to Miss Eléonore Bessong for inviting me at the “Follow me” program. #rarediseases #rarediseaseday #rarediseasesurvivor #rarediseasemonth #rarediseaseday2019 #rarediseaseawareness #rarediseaseday #rarediseaseweek #rarediseaseadvocate #rarediseasecommunity #rarediseaseresearch #rarediseasekids #indonesiacareforrarediseases #rarediseasefighter #rarediseasephotochallenge #rarediseaserockstar #rarediseaseawarenessmonth #rarediseasecycling #nationalrarediseaseday #raredisease #rarediseasessuck #rarediseasewarrior #rarediseasefoundation #rarediseaseuk #rarediseasessa #rarediseasessouthafrica #rarediseasefacts #rarediseasecameroon #rarediseaseafrica #rarediseasemom
Likes: 631
Posted at: 2019-03-03 12:00:35
Thanks to Miss Eléonore Bessong for inviting me at the “Follow me” program. #rarediseases #rarediseaseday #rarediseasesurvivor #rarediseasemonth #rarediseaseday2019 #rarediseaseawareness #rarediseaseday #rarediseaseweek #rarediseaseadvocate #rarediseasecommunity #rarediseaseresearch #rarediseasekids #indonesiacareforrarediseases #rarediseasefighter #rarediseasephotochallenge #rarediseaserockstar #rarediseaseawarenessmonth #rarediseasecycling #nationalrarediseaseday #raredisease #rarediseasessuck #rarediseasewarrior #rarediseasefoundation #rarediseaseuk #rarediseasessa #rarediseasessouthafrica #rarediseasefacts #rarediseasecameroon #rarediseaseafrica #rarediseasemom
rarediseasemom My mom sporting her
Likes: 32
Posted at: 2019-03-01 01:24:29
My mom sporting her "It's Hard" Familial Adenomatous Polyposis shirt for #rarediseaseday Link in bio or find this and more designs at www.cafepress.com/lifesapolyp ALL proceeds donated to NORD FAP Research Fund #showyourstripes
rarediseasemom Today is World Rare Disease Day. I'm very familiar with this day, and well acquainted with the challenges we face as parents of children who are affected by a rare disease. Parents, please don't forget to take care of yourselves! 
We're instructed on a flight to place our own air mask on first in an emergency, and self care in the rare disease space is no different. We as parents need to take care of ourselves physically, emotionally and spiritually. If we are broken down in any of those areas our ability to care for our children is compromised. 
Regardless of where you're at on this journey, I can tell you as veteran that a strong body and mind will help not only you, but everyone you care about. Don't forget to take care of yourselves, your personal strength will make this challenging journey much easier. 💜💪🧘‍♀️💪💜
#WRDD2019 
#RareDiseaseMom
www.curecanavan.org
Likes: 43
Posted at: 2019-02-28 18:15:21
Today is World Rare Disease Day. I'm very familiar with this day, and well acquainted with the challenges we face as parents of children who are affected by a rare disease. Parents, please don't forget to take care of yourselves! We're instructed on a flight to place our own air mask on first in an emergency, and self care in the rare disease space is no different. We as parents need to take care of ourselves physically, emotionally and spiritually. If we are broken down in any of those areas our ability to care for our children is compromised. Regardless of where you're at on this journey, I can tell you as veteran that a strong body and mind will help not only you, but everyone you care about. Don't forget to take care of yourselves, your personal strength will make this challenging journey much easier. 💜💪🧘‍♀️💪💜 #WRDD2019 #RareDiseaseMom www.curecanavan.org
rarediseasemom 🌸 Gabi nasceu em 06 de Maio de 2013, com diagnóstico de Síndrome de Dandy Walker, Sind. De West e Autismo; 🌸 A Síndrome de Dandy Walker é caracterizada por hipoplasia ou agenesia do corpo caloso e do vérmis cerebelar, além de dilatação do quarto ventrículo e mega cisterna magna;. 🌸 Sua incidência é de 1 indivíduo em cada 35.000 nascidos vivos, acometendo ambos os sexos. 
#raredisease #rarosentrenós #rarediseasemom #specialneedsmoms #muitossomosraros #dandywalkersyndrome #sindromedewest #autismo
#rarediseaseawareness #rarediseaseday
Likes: 32
Posted at: 2019-02-28 17:27:59
🌸 Gabi nasceu em 06 de Maio de 2013, com diagnóstico de Síndrome de Dandy Walker, Sind. De West e Autismo; 🌸 A Síndrome de Dandy Walker é caracterizada por hipoplasia ou agenesia do corpo caloso e do vérmis cerebelar, além de dilatação do quarto ventrículo e mega cisterna magna;. 🌸 Sua incidência é de 1 indivíduo em cada 35.000 nascidos vivos, acometendo ambos os sexos. #raredisease #rarosentrenós #rarediseasemom #specialneedsmoms #muitossomosraros #dandywalkersyndrome #sindromedewest #autismo #rarediseaseawareness #rarediseaseday
rarediseasemom I’m an emotional eater. 
I’m not ashamed to say it. When tragic events happen or major changes are coming - does anyone else use that as an excuse to eat complete garbage to fill the void? Or just me?

It’s no secret I drink this jewel of a drink everyday and I forever have this lasting mom energy that keeps me accomplishing the million daily tasks. I’ve been able to turn my brain into this machine full of creation and ideas but personally, I battle with the food. I think it’s because after kids, my lifestyle changed, so I use food as an “addiction” rather than just eating to survive. Relate yet?

Let me just say it. It doesn’t matter what product you take daily, if you eat crap the product will work temporary. Is not that the product quit working, it’s your old habits creeping back in. Im here to tell you that if I slipped from my goal it’s bc I quit putting in the work.

Supplements are a tool, not a magic potion. 
My mom drink is my tool & has MAJOR benefits of fat loss if you have fat to lose. Ketones are powerful. It’s changed me physically and mentally for the last two years. I feel better now than when I played college ball.

I remember that girl on the left. She was completely broken, hard on her self image, lacked all self care, didn’t want to look at herself in the mirror, she was mad & scared, exhausted and looking for light at the end of the tunnel. 
Shortly after the pic on the left was taken, I had no idea I was on my way to becoming the girl on the right.

It’s a marathon, not a race. If you struggle with food like I do, staying at your goals seems harder than actually reaching them. 
I snapped this pic on the right today, I wasn’t going to share but I knew someone out there is looking for hope and a tool, just like the one I drink everyday. 
Anyone else struggle with food?

#lowcarb #keto #drinkketones #momlife #rarediseasemom #energy
Likes: 288
Posted at: 2019-02-20 23:23:45
I’m an emotional eater. I’m not ashamed to say it. When tragic events happen or major changes are coming - does anyone else use that as an excuse to eat complete garbage to fill the void? Or just me? It’s no secret I drink this jewel of a drink everyday and I forever have this lasting mom energy that keeps me accomplishing the million daily tasks. I’ve been able to turn my brain into this machine full of creation and ideas but personally, I battle with the food. I think it’s because after kids, my lifestyle changed, so I use food as an “addiction” rather than just eating to survive. Relate yet? Let me just say it. It doesn’t matter what product you take daily, if you eat crap the product will work temporary. Is not that the product quit working, it’s your old habits creeping back in. Im here to tell you that if I slipped from my goal it’s bc I quit putting in the work. Supplements are a tool, not a magic potion. My mom drink is my tool & has MAJOR benefits of fat loss if you have fat to lose. Ketones are powerful. It’s changed me physically and mentally for the last two years. I feel better now than when I played college ball. I remember that girl on the left. She was completely broken, hard on her self image, lacked all self care, didn’t want to look at herself in the mirror, she was mad & scared, exhausted and looking for light at the end of the tunnel. Shortly after the pic on the left was taken, I had no idea I was on my way to becoming the girl on the right. It’s a marathon, not a race. If you struggle with food like I do, staying at your goals seems harder than actually reaching them. I snapped this pic on the right today, I wasn’t going to share but I knew someone out there is looking for hope and a tool, just like the one I drink everyday. Anyone else struggle with food? #lowcarb #keto #drinkketones #momlife #rarediseasemom #energy
rarediseasemom A rare moment where Summer climbed up on my lap to read while i was reading. 💙 A beautiful gift from my angel on Valentine’s Day. Always celebrate the small moments of connection.....she stayed for 15 minutes and then moved. #caringforcaregivers #specialneedsmoms #optimism #rarediseasemom
Likes: 31
Posted at: 2019-02-15 15:20:32
A rare moment where Summer climbed up on my lap to read while i was reading. 💙 A beautiful gift from my angel on Valentine’s Day. Always celebrate the small moments of connection.....she stayed for 15 minutes and then moved. #caringforcaregivers #specialneedsmoms #optimism #rarediseasemom
rarediseasemom There is something crazy about social media that makes you feel like not enough. You get drowned in a world of being perfect; having the perfect family, being the perfect spouse, living in the perfect house. It’s overwhelming and at times can really lead you down a path of depression, jealousy, gluttony, or hate. 
Now don’t get me wrong, I know social media can be used for good too. But how many times have you looked at an account, wishing you could be like that person. I know I do a lot!
I’m not perfect and honestly I don’t try hard to be. I try to be as transparent as possible on social media. I share with you my failures, triumphs, hard times, good times, and the the in between. Life isn’t always perfect! And you know what?! That’s ok! It’s what makes you different and stronger. 
Do you know how many times I’ve failed, even if it was something minuscule... each failure hurts! But each failure was from a risk I took. A risk that was outside my comfort zone in order to become the person that I am today. Without those risks and failures I wouldn’t be me. And I’m pretty proud with who I am 💜
#mom #momoftwo #momofboth #momincollege #fitmom #mompreneur #notyouraveragegirl #averagegirl #fitnesslife #bloggerwithoutablog #momblog #rarediseasemom #fitness #health #healthandfitness #healthandwellness #healthandwellnesscoach #coach #adventurer #risktaker #liveyourlife #beyou #motivate #militarywife #navywife #militarylife #loveyourself #takeachanceonyou
Likes: 32
Posted at: 2019-02-14 13:35:49
There is something crazy about social media that makes you feel like not enough. You get drowned in a world of being perfect; having the perfect family, being the perfect spouse, living in the perfect house. It’s overwhelming and at times can really lead you down a path of depression, jealousy, gluttony, or hate. Now don’t get me wrong, I know social media can be used for good too. But how many times have you looked at an account, wishing you could be like that person. I know I do a lot! I’m not perfect and honestly I don’t try hard to be. I try to be as transparent as possible on social media. I share with you my failures, triumphs, hard times, good times, and the the in between. Life isn’t always perfect! And you know what?! That’s ok! It’s what makes you different and stronger. Do you know how many times I’ve failed, even if it was something minuscule... each failure hurts! But each failure was from a risk I took. A risk that was outside my comfort zone in order to become the person that I am today. Without those risks and failures I wouldn’t be me. And I’m pretty proud with who I am 💜 #mom #momoftwo #momofboth #momincollege #fitmom #mompreneur #notyouraveragegirl #averagegirl #fitnesslife #bloggerwithoutablog #momblog #rarediseasemom #fitness #health #healthandfitness #healthandwellness #healthandwellnesscoach #coach #adventurer #risktaker #liveyourlife #beyou #motivate #militarywife #navywife #militarylife #loveyourself #takeachanceonyou
rarediseasemom I could be a “normal” mom with a “normal” kid and a “normal” bedtime routine. But then I would miss out on these precious extra snuggles. And we have a bond like no other 💜 #findthejoy
PS my shirt says “I’m so tired” which is very accurate. But my heart is full beyond belief which makes up for the lack of sleep.
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#cysticfibrosis #cysticfibrosisawareness #cfawareness #cflife #cfirl #percussions #airwayclearance #nighttimeroutine #cfmom #cfmama #cftoddler #chestphysio #lungs #pulmonology #rarediseasemom #chornicillness #raredisease #momlife #normal #65roses #sixtyfiveroses #motherdaughter #healthbeme #webewarrior #love #mommyandme #lungdisease
Likes: 147
Posted at: 2019-02-13 03:35:45
I could be a “normal” mom with a “normal” kid and a “normal” bedtime routine. But then I would miss out on these precious extra snuggles. And we have a bond like no other 💜 #findthejoy PS my shirt says “I’m so tired” which is very accurate. But my heart is full beyond belief which makes up for the lack of sleep. . . . #cysticfibrosis #cysticfibrosisawareness #cfawareness #cflife #cfirl #percussions #airwayclearance #nighttimeroutine #cfmom #cfmama #cftoddler #chestphysio #lungs #pulmonology #rarediseasemom #chornicillness #raredisease #momlife #normal #65roses #sixtyfiveroses #motherdaughter #healthbeme #webewarrior #love #mommyandme #lungdisease
rarediseasemom Another reality of living with a #raredisease like #hyperinsulinism - long drives to doctor visits! In honor of #RareDiseaseDay members of our CHI family are sharing their stories. Thank you for helping raise #awareness! 
#Repost @healthylifewithemi with @get_repost
・・・
Today we drove over 150 miles for Zoe’s endocrinologist appointment. 
Why drive so far you ask?? One complication with having a rare disease is that we have to travel to the experts in her care.  Not every Endocrine knows about Congenital Hyperinsulinism.  One wrong direction during a low can lead to devastating results.  So, we drive over 150 miles to get expert advice and care from an amazing Endocrine who studied at CHOP with others leading the way in CHI research.
#congenitalhyperinsulinisminternational #specialneedsmom #rarediseasemom #zoeelizabeth #momlife #CHKD #congenitalhyperinsulinism #sayhitoHI #sweetestcause
Likes: 35
Posted at: 2019-02-05 14:01:24
Another reality of living with a #raredisease like #hyperinsulinism - long drives to doctor visits! In honor of #RareDiseaseDay members of our CHI family are sharing their stories. Thank you for helping raise #awareness! #Repost @healthylifewithemi with @get_repost ・・・ Today we drove over 150 miles for Zoe’s endocrinologist appointment. Why drive so far you ask?? One complication with having a rare disease is that we have to travel to the experts in her care. Not every Endocrine knows about Congenital Hyperinsulinism. One wrong direction during a low can lead to devastating results. So, we drive over 150 miles to get expert advice and care from an amazing Endocrine who studied at CHOP with others leading the way in CHI research. #congenitalhyperinsulinisminternational #specialneedsmom #rarediseasemom #zoeelizabeth #momlife #CHKD #congenitalhyperinsulinism #sayhitoHI #sweetestcause
rarediseasemom Today we drove over 150 miles for Zoe’s endocrinologist appointment. 
Why drive so far you ask?? One complication with having a rare disease is that we have to travel to the experts in her care.  Not every Endocrine knows about Congenital Hyperinsulinism.  One wrong direction during a low can lead to devastating results.  So, we drive over 150 miles to get expert advice and care from an amazing Endocrine who studied at CHOP with others leading the way in CHI research.
#congenitalhyperinsulinisminternational #specialneedsmom #rarediseasemom #zoeelizabeth #momlife #CHKD #congenitalhyperinsulinism #sayhitoHI #sweetestcause
Likes: 30
Posted at: 2019-02-05 01:58:03
Today we drove over 150 miles for Zoe’s endocrinologist appointment. Why drive so far you ask?? One complication with having a rare disease is that we have to travel to the experts in her care. Not every Endocrine knows about Congenital Hyperinsulinism. One wrong direction during a low can lead to devastating results. So, we drive over 150 miles to get expert advice and care from an amazing Endocrine who studied at CHOP with others leading the way in CHI research. #congenitalhyperinsulinisminternational #specialneedsmom #rarediseasemom #zoeelizabeth #momlife #CHKD #congenitalhyperinsulinism #sayhitoHI #sweetestcause
rarediseasemom When children learn about the digestive system, a HUGE, KEY organ is left out.  The pancreas is a part of digestion.  It delicately keeps your body thriving with just enough glycogen and insulin... well, in a normal body. 
In Zoe’s body, her pancreas continuously produces insulin.  The tricky part is that while the pancreas is always producing insulin, it is not producing at a constant rate.  One day it’s a trickle and others a roar.
That is what makes treatments & care so tricky!  And why awareness is essential.
#congenitalhyperinsulinisminternational #specialneedsmom #rarediseasemom #zoeelizabeth #momlife #pancreas #pancreasproblems #congenitalhyperinsulinism #sayhitoHI
Likes: 16
Posted at: 2019-02-03 15:46:52
When children learn about the digestive system, a HUGE, KEY organ is left out. The pancreas is a part of digestion. It delicately keeps your body thriving with just enough glycogen and insulin... well, in a normal body. In Zoe’s body, her pancreas continuously produces insulin. The tricky part is that while the pancreas is always producing insulin, it is not producing at a constant rate. One day it’s a trickle and others a roar. That is what makes treatments & care so tricky! And why awareness is essential. #congenitalhyperinsulinisminternational #specialneedsmom #rarediseasemom #zoeelizabeth #momlife #pancreas #pancreasproblems #congenitalhyperinsulinism #sayhitoHI
rarediseasemom I am a special needs mom.  The mom of 1 of the strongest little girls I have ever had the privilege to know. 
Over the last 5 years, even while focusing on my health, I have forgotten to sleep, missed meals, & stayed up for days straight to ensure she lived.  I am unable to take this burden from her, but I will do everything in my power to support her as best as I can to help her succeed. 
#raredisease #congenitalhyperinsulinism #congenitalhyperinsulinisminternational #rarediseasemom #daretoberare #specialneedsmom #momlife #zoeelizabeth #sayhitoHI
Likes: 50
Posted at: 2019-02-03 01:49:06
I am a special needs mom. The mom of 1 of the strongest little girls I have ever had the privilege to know. Over the last 5 years, even while focusing on my health, I have forgotten to sleep, missed meals, & stayed up for days straight to ensure she lived. I am unable to take this burden from her, but I will do everything in my power to support her as best as I can to help her succeed. #raredisease #congenitalhyperinsulinism #congenitalhyperinsulinisminternational #rarediseasemom #daretoberare #specialneedsmom #momlife #zoeelizabeth #sayhitoHI
rarediseasemom Annual exams, year two.

We got the all clear today, friends. Big man is developing normally - meeting his milestones intellectually and physically, and was HAMMING IT UP with everyone he met all afternoon. 
So. Very. Grateful.

And so very motivated to dedicate more of our lives to the #nf community.

Because, like I’ve said before, we are only one moment away from a lump in our throats, an extensive treatment plan filled with needles and surgeries and chemotherapy, a clinical trial, a lifetime of pain.

In the world of rare disease, there is no rhyme or reason to who is challenged greatly and who is “spared” from it all. And with a diagnosis of #Neurofibromatosis which can literally manifest in hundreds of ways, there is no telling what the future may bring.

And because I know that I am one moment away from losing my breath in a doctor’s words, one moment away from seeing my child in pain - and that there are thousands of other parents and patients who have already lived that moment - we continue to dedicate and live a large part of our lives to advocate for our NF family. 
THANK YOU to each and every one of our family and friends who have expressed concern and offered prayers and thoughts upwards in honor of Nico. We feel that love. But know that the work is not over. There are other sons and daughters who are just as amazing as ours who did not walk out of their annual appointments with smiles on their faces. There are countless others who searching for clinical trials to participate in in the hopes of finding some relief. Adults who would rather stay home than be in public for fear of what might happen. Sweet babes who are struggling with feeding tubes because they are nauseous from their chemotherapy regimens. Moms and dads who are poring over online journal articles right now searching for answers for their child. We continue to work for them, and hope that you will too. ♥️ .
#raredisease #mom #momlife #rarediseasemom #nord #ctf #nfnetwork #mayoclinic #grateful #parenting #advocate #love #family #mindfulparenting #son #thankful #mama #lifestyle #
Likes: 65
Posted at: 2018-12-21 05:29:44
Annual exams, year two. We got the all clear today, friends. Big man is developing normally - meeting his milestones intellectually and physically, and was HAMMING IT UP with everyone he met all afternoon. So. Very. Grateful. And so very motivated to dedicate more of our lives to the #nf community. Because, like I’ve said before, we are only one moment away from a lump in our throats, an extensive treatment plan filled with needles and surgeries and chemotherapy, a clinical trial, a lifetime of pain. In the world of rare disease, there is no rhyme or reason to who is challenged greatly and who is “spared” from it all. And with a diagnosis of #Neurofibromatosis which can literally manifest in hundreds of ways, there is no telling what the future may bring. And because I know that I am one moment away from losing my breath in a doctor’s words, one moment away from seeing my child in pain - and that there are thousands of other parents and patients who have already lived that moment - we continue to dedicate and live a large part of our lives to advocate for our NF family. THANK YOU to each and every one of our family and friends who have expressed concern and offered prayers and thoughts upwards in honor of Nico. We feel that love. But know that the work is not over. There are other sons and daughters who are just as amazing as ours who did not walk out of their annual appointments with smiles on their faces. There are countless others who searching for clinical trials to participate in in the hopes of finding some relief. Adults who would rather stay home than be in public for fear of what might happen. Sweet babes who are struggling with feeding tubes because they are nauseous from their chemotherapy regimens. Moms and dads who are poring over online journal articles right now searching for answers for their child. We continue to work for them, and hope that you will too. ♥️ . #raredisease #mom #momlife #rarediseasemom #nord #ctf #nfnetwork #mayoclinic #grateful #parenting #advocate #love #family #mindfulparenting #son #thankful #mama #lifestyle #
rarediseasemom Only Cystinosis parents will understand ❤️💔💪
#cystinosemor #cystinosismom #rarediseases #rarediseasemom #gtube #kidneydisease #fighter #mydaughterisrare #shesafighter #youwillneverunderstand
Likes: 14
Posted at: 2018-11-25 09:17:07
rarediseasemom Mamas. Let’s talk about SELF CARE for a sec. It’s one of the most important reminders that we all need from time to time, or one that a new mama may need to hear for the first time. .
I’ll start by prefacing that being my kid’s mother is a title that I cherish to my core. I know without a single doubt that it’s one of the reasons that God put me on this earth. .
BUT. Mama is not my only title. I am also a child of God, a wife, a friend, a daughter, an aunt, a leader, so on and so forth. Many ladies lose their identity when they gain that coveted title of ‘mama’. It’s a cycle that needs to be broken. You can be all of the above (& MORE). You are not limited to a single title. You can be an amazing mother, while not forgetting who you are as a women. As I always say, while it might be cliche, YOU CANNOT POUR FROM AN EMPTY CUP. So make sure you’re filling your cup. Self care is the FUEL that allows your light to shine brightly. .
Take 30 min a day for YOU, doing something you love.. whether it be a hot bath, a long shower or a simple walk in the neighborhood. And don’t speak the words that you “don’t have time.” Listen. Coming from someone whose time has been spread thinner than most for over a solid 3 years- WHAT YOU MAKE A PRIORITY.. WILL HAPPEN. Priorities are never in conflict. Sometimes my 30 min is at midnight after my husband and children have gone to bed, or sometimes it’s waking up at 5 am before my children have awoke to make sure that the need is filled. .
Too often, this is lost. Moms become exhausted in all forms of the word and they completely lose themselves. Give your kids the well-fueled, best version of YOU. They don’t deserve any less, & NEITHER DO YOU.
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So- grab a bath bomb, a face mask or even a glass of wine, if that’s your thing.. & LOVE ON YOURSELF. .
#selflove #selfcare #fillyourcup #girlmom #boymom #preemiemom #micropreemiemom #nicumom #chdmom #childhoodcancermom #rssmom #rarediseasemom #organtransplantmom
#inspiration #inspirational #momlife
Likes: 23
Posted at: 2018-11-18 03:16:36
Mamas. Let’s talk about SELF CARE for a sec. It’s one of the most important reminders that we all need from time to time, or one that a new mama may need to hear for the first time. . I’ll start by prefacing that being my kid’s mother is a title that I cherish to my core. I know without a single doubt that it’s one of the reasons that God put me on this earth. . BUT. Mama is not my only title. I am also a child of God, a wife, a friend, a daughter, an aunt, a leader, so on and so forth. Many ladies lose their identity when they gain that coveted title of ‘mama’. It’s a cycle that needs to be broken. You can be all of the above (& MORE). You are not limited to a single title. You can be an amazing mother, while not forgetting who you are as a women. As I always say, while it might be cliche, YOU CANNOT POUR FROM AN EMPTY CUP. So make sure you’re filling your cup. Self care is the FUEL that allows your light to shine brightly. . Take 30 min a day for YOU, doing something you love.. whether it be a hot bath, a long shower or a simple walk in the neighborhood. And don’t speak the words that you “don’t have time.” Listen. Coming from someone whose time has been spread thinner than most for over a solid 3 years- WHAT YOU MAKE A PRIORITY.. WILL HAPPEN. Priorities are never in conflict. Sometimes my 30 min is at midnight after my husband and children have gone to bed, or sometimes it’s waking up at 5 am before my children have awoke to make sure that the need is filled. . Too often, this is lost. Moms become exhausted in all forms of the word and they completely lose themselves. Give your kids the well-fueled, best version of YOU. They don’t deserve any less, & NEITHER DO YOU. . So- grab a bath bomb, a face mask or even a glass of wine, if that’s your thing.. & LOVE ON YOURSELF. . #selflove #selfcare #fillyourcup #girlmom #boymom #preemiemom #micropreemiemom #nicumom #chdmom #childhoodcancermom #rssmom #rarediseasemom #organtransplantmom #inspiration #inspirational #momlife
rarediseasemom Captured this today ✨ .
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#motherhood #love #rarediseasemom #momblogger #momsofinstagram #mommyblogger #parenting #motherhoodrising #lifestyle #kids #motherhoodunplugged #family #ig_motherhood #dailyparenting #baby #letthembelittle #mommylife #blogger #mom #motherhoodthroughinstagram #instamom #mommy
Likes: 180
Posted at: 2018-11-16 01:14:52
rarediseasemom Not gonna lie, yesterday sucked. I’ve become so numb and desensitized to hospital visits and talking about my son’s never ending list of conditions that make a simple cold very, very complicated. I’ll be writing more in detail later on, since we have 4 appointments today ( 2 in clinic, 2 therapy). In the meantime, I’m very lucky to have my rare disease momma tribe who keeps me going on these gut wrenching days. I love you, you know who you are! ❤️❤️❤️ #rarediseaseawareness #21qpartialdeletion #rarediseasemom #specialneedsmom #lookforthehelpers #kidswithspecialneeds
Likes: 70
Posted at: 2018-11-15 16:11:17
Not gonna lie, yesterday sucked. I’ve become so numb and desensitized to hospital visits and talking about my son’s never ending list of conditions that make a simple cold very, very complicated. I’ll be writing more in detail later on, since we have 4 appointments today ( 2 in clinic, 2 therapy). In the meantime, I’m very lucky to have my rare disease momma tribe who keeps me going on these gut wrenching days. I love you, you know who you are! ❤️❤️❤️ #rarediseaseawareness #21qpartialdeletion #rarediseasemom #specialneedsmom #lookforthehelpers #kidswithspecialneeds
rarediseasemom Please remember this ❤️ #raredisease #rarediseases #rarediseasemom #takecareofourrarekids #cystinosis #cystinosismom #sickkidsstayshome #sygebørnbliverhjemme #mortilkronisksygbarn #tænkdigom #sygebørn #kronisksygdom #sjældnediagnoser #cystinose #cystinosemor #rarediseasefoundation
Likes: 6
Posted at: 2018-11-15 09:41:14
Please remember this ❤️ #raredisease #rarediseases #rarediseasemom #takecareofourrarekids #cystinosis #cystinosismom #sickkidsstayshome #sygebørnbliverhjemme #mortilkronisksygbarn #tænkdigom #sygebørn #kronisksygdom #sjældnediagnoser #cystinose #cystinosemor #rarediseasefoundation
rarediseasemom Been a fun few days, first heading to San Rafael, CA with my hunnie, @dtbtrack20, to share our story at @biomarinofficial about the importance of #earlydiagnosis and quick access to treatment for kids with #cln2. Then gave the hubs a hug as he took a flight home and I hopped on a little plane ride north to share another piece of our story with some wonderful women at Colville Nazarene church in Washington where all my siblings, nephew and niece are! Love the opportunities to share and it was a bonus to visit with my brothers and sisters. 
#shareyourstory #jesuseyes #cantstealmyjoy #family #BattenDisease #battenwarriors #rarediseasemom #rarediseaseawareness
Likes: 64
Posted at: 2018-11-11 20:35:43
Been a fun few days, first heading to San Rafael, CA with my hunnie, @dtbtrack20, to share our story at @biomarinofficial about the importance of #earlydiagnosis and quick access to treatment for kids with #cln2. Then gave the hubs a hug as he took a flight home and I hopped on a little plane ride north to share another piece of our story with some wonderful women at Colville Nazarene church in Washington where all my siblings, nephew and niece are! Love the opportunities to share and it was a bonus to visit with my brothers and sisters. #shareyourstory #jesuseyes #cantstealmyjoy #family #BattenDisease #battenwarriors #rarediseasemom #rarediseaseawareness
rarediseasemom I watched my daughter sit calmly today while a nurse inserted an IV after Lauren told her, very matter of factly, where she would prefer to have it placed. I reflected on this tonight while sitting across from her and enjoying ice cream together. This kid is tough as nails, and she is sweet, kind, empathetic....and still a child. One who never should have had to learn to be tough.

A rare disease diagnosis sure has a way of changing everything. One moment you're just going along blissfully and the next you're in a hospital room and a doctor seems to be speaking a different language to you. Gradually you learn that language. You begin to understand. And then you get angry, and you rage against the world, you have complete breakdowns....grief and a sense of loss as you see your child's life change is profound. Eventually it gets a little easier. You turn into a researcher, an advocate. You become that parent that helps other parents that are just beginning this (totally f'd up) journey. You cope, you start embracing every day because you truly understand that tomorrow isn't guaranteed. You're able to smile and have hope.

And then you find yourself sitting across from your beautiful daughter, looking at my favorite set of brown eyes, watching her eat her ice cream. It's those moments that sneak up on you and the pain and fear rush in. I sat there, fighting the tears that were threatening to fall. I succeeded. I saved them for a dark room while my sweet girl sleeps to the sound of rain coming from her phone. Every so often you have to give in to the pain or else it'll eat you up, it'll turn you into someone you don't want to be. Just don't give in while you're having ice cream.
Likes: 71
Posted at: 2018-10-23 08:20:57
I watched my daughter sit calmly today while a nurse inserted an IV after Lauren told her, very matter of factly, where she would prefer to have it placed. I reflected on this tonight while sitting across from her and enjoying ice cream together. This kid is tough as nails, and she is sweet, kind, empathetic....and still a child. One who never should have had to learn to be tough. A rare disease diagnosis sure has a way of changing everything. One moment you're just going along blissfully and the next you're in a hospital room and a doctor seems to be speaking a different language to you. Gradually you learn that language. You begin to understand. And then you get angry, and you rage against the world, you have complete breakdowns....grief and a sense of loss as you see your child's life change is profound. Eventually it gets a little easier. You turn into a researcher, an advocate. You become that parent that helps other parents that are just beginning this (totally f'd up) journey. You cope, you start embracing every day because you truly understand that tomorrow isn't guaranteed. You're able to smile and have hope. And then you find yourself sitting across from your beautiful daughter, looking at my favorite set of brown eyes, watching her eat her ice cream. It's those moments that sneak up on you and the pain and fear rush in. I sat there, fighting the tears that were threatening to fall. I succeeded. I saved them for a dark room while my sweet girl sleeps to the sound of rain coming from her phone. Every so often you have to give in to the pain or else it'll eat you up, it'll turn you into someone you don't want to be. Just don't give in while you're having ice cream.
rarediseasemom Friday night snuggles with my Bailey girl 💜This sweet pup always knows when my heart is hurting. Who needs personal space?!?!?!
#blacklablove #labsofinstagram #blacklab #rarediseasemom #invisibleillness
Likes: 23
Posted at: 2018-10-20 04:24:00
Friday night snuggles with my Bailey girl 💜This sweet pup always knows when my heart is hurting. Who needs personal space?!?!?! #blacklablove #labsofinstagram #blacklab #rarediseasemom #invisibleillness
rarediseasemom Yes 😂 caffeine is a medical mamas best friend. #medicalmom #medicalmama #medicalkids #specialmedicalneeds #medicallycomplex #medicallyfragile
Likes: 28
Posted at: 2018-10-09 23:57:12
rarediseasemom Another follower told us about this amazing group called TinySuperheroes! They make free capes for kids with medical conditions. You nominate them on the website, then you're provided with a fundraiser link that you can share with friends & family and/or on your child's support page(s) on social media for people to donate. Once you raise $30 your child's cape will start being made! And BONUS, if you raise extra money, that money will go toward other kids on the waiting list to get their cape! I also think you have the option to just buy one, if you like. They also have a group on Facebook (TinySuperheroes) to join and talk to other Superhero parents!
Likes: 20
Posted at: 2018-10-04 00:40:49
Another follower told us about this amazing group called TinySuperheroes! They make free capes for kids with medical conditions. You nominate them on the website, then you're provided with a fundraiser link that you can share with friends & family and/or on your child's support page(s) on social media for people to donate. Once you raise $30 your child's cape will start being made! And BONUS, if you raise extra money, that money will go toward other kids on the waiting list to get their cape! I also think you have the option to just buy one, if you like. They also have a group on Facebook (TinySuperheroes) to join and talk to other Superhero parents!
rarediseasemom October is Rett Syndrome Awareness Month! Does your child or someone's child you know have Rett Syndrome? Share your story or tag them below! We will be sharing stories of pediatric warriors with Rett Syndrome all month long! #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
Likes: 17
Posted at: 2018-10-03 23:43:01
October is Rett Syndrome Awareness Month! Does your child or someone's child you know have Rett Syndrome? Share your story or tag them below! We will be sharing stories of pediatric warriors with Rett Syndrome all month long! #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
rarediseasemom October is Spina Bifida Awareness Month! Does your child or someone's child you know have spina bifida? Tell us your child's story or tag them below! We will be sharing stories of pediatric warriors with spina bifida all month long! #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
Likes: 31
Posted at: 2018-10-03 04:09:40
October is Spina Bifida Awareness Month! Does your child or someone's child you know have spina bifida? Tell us your child's story or tag them below! We will be sharing stories of pediatric warriors with spina bifida all month long! #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
rarediseasemom World Cerebral Palsy Day is October 6th! Does your child or someone's child you know have CP? Tell us your story or tag someone below! We will be sharing stories Oct. 6! #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
Likes: 19
Posted at: 2018-10-02 00:08:37
World Cerebral Palsy Day is October 6th! Does your child or someone's child you know have CP? Tell us your story or tag someone below! We will be sharing stories Oct. 6! #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
rarediseasemom October is Liver Disease Awareness Month! Do you or someone you know have a child with a liver disease/condition? Share your story or tag them below! We will be sharing stories of pediatric warriors with liver conditions all month! #medicalmom #medicalmama #medicalkids #specialmedicalneeds #medicallycomplex #medicallyfragile
Likes: 21
Posted at: 2018-10-01 22:09:04
October is Liver Disease Awareness Month! Do you or someone you know have a child with a liver disease/condition? Share your story or tag them below! We will be sharing stories of pediatric warriors with liver conditions all month! #medicalmom #medicalmama #medicalkids #specialmedicalneeds #medicallycomplex #medicallyfragile

soulfulpenguin +soulfulpenguin
soulfulpenguin
+soulfulpenguin
Followers: 78554
Following: 75
The beauty of your soul is immeasurable. #soulfulpenguin
soulfulpenguin +soulfulpenguin Lightbulb Moments⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 529
Posted at: 2019-07-21 18:20:31
soulfulpenguin +soulfulpenguin 7.20.19 ... Heart in Hand⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 674
Posted at: 2019-07-21 02:45:40
soulfulpenguin +soulfulpenguin 7.15.19 ... Rainbow Wonder
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 1211
Posted at: 2019-07-19 18:02:29
soulfulpenguin +soulfulpenguin 7.17.19 ... Leave Pride and Ego at the Door⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 3180
Posted at: 2019-07-18 17:57:46
soulfulpenguin +soulfulpenguin No Superficial ⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 585
Posted at: 2019-07-17 17:42:23
soulfulpenguin +soulfulpenguin 7.15.19 ... Don’t Underestimate Your Current Perspective ⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 533
Posted at: 2019-07-16 17:54:22
7.15.19 ... Don’t Underestimate Your Current Perspective ⠀ •⠀ •⠀ •⠀ #life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
soulfulpenguin +soulfulpenguin Unending Support ⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
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Posted at: 2019-07-16 03:00:55
soulfulpenguin +soulfulpenguin Shine Back⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 823
Posted at: 2019-07-15 17:17:32
soulfulpenguin +soulfulpenguin Stay Uncharted ⠀
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#life #quotes #quote #happy #happiness #smile #writersofinstagram #poetry #soulfulpenguin #laugh #laughter #love #poems #instagramwriters #mood #him #her #truth #relationship #relationships #word #words #nyc #music #lyrics #writer #writing #qotd #soulful #soul
Likes: 755
Posted at: 2019-07-14 18:31:13

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