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We Are the Sisterhood of Mothers With Medically Fragile Children

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We are a sisterhood that we never imagined being a part of and never wanted to be in. Yet, we are a sisterhood united in caring for our children and helping them meet their highest potential. Most of us are at home, unable to meet due to the demands of our children’s needs. Our relationships are forged in online support groups, through non-profit organizations and via online blogs and articles. We stand united, knowing our kids deserve the best resources, services and care. Yet, many of us are stuck in a broken system where insurance dictates what our children will receive. We hope for the best, but don’t know what the future holds in a world that wasn’t built for our kids.

When we are struggling, we try our best to lift one another up, offer suggestions, resources and tips for what has worked for us. There is no handbook or parenting book about raising a medically fragile child.

Most of our children don’t fit a mold. All are uniquely their own, and many have multiple diseases or disorders so rare that most doctors have never seen. When no one hears our child, we are their advocates. We yell, scream and fight for everything we know they deserve. Early on we realize with a heavy heart, the world we live in isn’t built for our children. Each and every day we are fighting someone about some aspect of their care. It could be a doctor, nurse, therapist, educator, or an insurance company. Every day we fight and launch battles for what we know our children need to thrive, and sometimes our fight ends in defeat. We cry in our bedrooms at night. In the dead of night, many of us lie awake, overcome by fear of the unknown.

All we want is for our children to not have to fight so hard to simply be.

Sometimes we pass one another as we rush from appointment to appointment. We chat in the waiting room of therapy and discuss the newest techniques, education or options to help our kids. We see one another in the hospital and clinic waiting rooms, and sometimes chat about our child’s diagnosis. But all we really think is when we see each other are “these are my people.” We are the group that “gets it,” and we live in a  world that doesn’t seem to understand. Why would anyone have to “get” this world if they didn’t live it? These sacred moments become warm spots in our hearts because we know there is someone else out there living what we live each and every day.

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When new moms enter our world, most of us stand united in trying to offer support in any way we can. We know this world will chew you up if you don’t have a knowledgeable guide along the journey. Moms with older children mentor those of us that are new. We learn from them and learn what has and hasn’t worked for them. When we see another mom struggling with choices, we offer our experience about how this has improved our child’s life. Most of us have been through dangerous surgeries, expensive testing and have enough medical equipment in our homes to open a small hospital. It is a community that simply wants the best for our children and above all else – we want our children to live.

Every day most of us are fighting a battle against a disease that we will never beat. Most of us know the very real implications of what can happen to our children at any given time.

We know nothing in our world is to be taken for granted.

Birthdays for our children aren’t a given, so each and every year it is a celebration.

Every year that passes and our child has survived, we have won a small battle.

In this very fragile world we live in, we have been able to see the true meaning of love. Many of our children have been on the brink of death and come back to us. We know no matter what, love is the only thing that can keep us going. We know our love is what keeps us going on the days that feel impossible. Love is what will keep us moving on the days when the news at appointments is less than positive. We never never give up on our children, and we will never stop fighting for their well being.

We are a sisterhood that has come together by accident. Our children are what unite us, but the beauty of this community is we have seen life in a way most people will never experience. Our ability to help one another, help our children and sometimes help ourselves is a testament to how strong we truly are. Most of us don’t feel strong. In fact, many of us feel we are coming apart at the seams. However, we unite together when one is struggling. We lift each other up and remind one another it is OK to cry, feel defeated and be sad. Yet, we also remind each other we have to keep going. No matter how hard our journey is, we have each other. Our path is full of debris and obstacles most parents will never experience, but we navigate it with grace and courage. We stand together as we move through our journey.This would be impossible to do alone. While we may not get to spend time together, or have play dates, as  most of our relationships exist online – we are the village of Mothers with Medically Fragile Children. It’s the best village and world I’ve ever been in. I hate being here, but I don’t want to be anywhere else.

Follow this journey on Without a Crystal Ball and on Facebook

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To England's Future Prime Minister After Brexit: Please Don't Forget the Rare Disease Community

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Dear Mrs. May,

Firstly I would like to extend my congratulations on your appointment as the next prime minister. I am of course aware of the significant challenge you are now facing in leading the UK through the separation process from the EU. I am contacting you now, to ask as part of this separation process, that the relatively small, but very important rare disease and undiagnosed community are considered.

I am the mother of a child with an undiagnosed genetic condition – one of 6,000 unique children  born every year. There are many more diagnosed with rare diseases. The EU has made rare disease a strategic health priority, and its influence in this area has been significant. You may already be aware the UK is the centre for genetic research for rare diseases and I fear we might lose this status in due course. These genetic research programmes are the hope we have for a future diagnosis –  which is our only chance of a prognosis, potential treatment and maybe prevention in future generations. There is a high level of anxiety in the disability community, that is amplified in the rare disease and undiagnosed community, as we face the possibility of losing the significant EU
investment in this field. For many of our community, we fear there will simply be too few affected patients in the UK to justify the investment required. The key benefits of the EU focus in this area to date are:

  • Collaboration across borders and critical mass for an otherwise small population
  • Shared skills, resources and information – including access to niche experts across all countries
  • Research funding (otherwise cost prohibitive)
  • Medicine authorisation across the EU (otherwise cost prohibitive)
  • Innovation and knowledge transfer permitted by European Directives
  • Health benefits for those in the rare/undiagnosed community

I appreciate it is too early to begin to understand the full implications of Brexit. However if consideration can be given to protecting some of the critical work in this area, it would be of significant benefit to this community I, and many others, sincerely hope that you will give this full and proper consideration.

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To the Experienced Hospital Staff Member Who Couldn't Accept That I'm Rare

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I sit on a hospital bed — vulnerable, shaken by how unwell I became, waiting for your guidance to prevent this medical emergency from happening again. I am an unusual case. Rare. “Interesting” (which I have learned is never good in a medical sense). I have been told after months of medical emergencies that conventional treatments will not work with me, that something drastic will be required. I’ve explained this to you more than once, and we seemed to be getting somewhere, but today when you sit down things are different.

You talk to me as if I am a typical case. You make me feel like I am to blame for any deteriorations in my health and suggest that I must have been giving my injections incorrectly. You ignore my polite and careful reminders that I have tried the things you are suggesting many times before and ended up a little too close to departing the planet as a result. You tell me how long you’ve been working with this particular illness. You take my hope, piece by piece, until I am so desperate not to have to fight this hard for my life again that I find my voice and anxiously tell you I don’t really feel like you are listening to me.

“I am listening, I just refuse to accept what you are saying” is your response. My world crumbles around me. Tears burn in my eyes, but I cannot let you see them. My life is in your hands and you are unwilling to hold on to it. You have only met me three times and yet you refuse to accept that I know anything about my situation. You refuse to treat me as anything other than typical and tell me you have done your part and the outcome is now up to me. I want to crawl under the blankets and disintegrate. I want to give up. I wonder why I bother to speak. I suddenly feel so entirely alone in this, and feel that you are leaving me to die.

The problem is that you have specialized in this illness for as long as I have been alive and you are no longer willing to learn — you have too much experience and think you have seen it all. And when I break down because of your words, you say you are worried about my emotional state, not entertaining the possibility that you could have triggered such a response with your ignorance.

MIGHTY PARTNER RESOURCES

Placing your health in the hands of people you barely know can be a lot more distressing than others imagine. In an emergency or an unplanned hospital admission, reality asks us to rely on complete strangers, and circumstance simultaneously asks us to work with them and fully depend upon them. Well-meaning relatives and other people lucky enough to look at the situation from a viewpoint of near-perfect health often expect us to seamlessly and effortlessly take a leap of faith, not considering that sometimes doctors and nurses do not know what to do, and often belittle our own knowledge and experience with suggestions that doctors know what they are talking about and we should just put our trust in them. They may assume that because we can explain a rare condition in such detail, most medical professionals must share in the same knowledge. The more experienced the staff member, the more ideas they should have, the more likely they are to have seen a case as complex as the one brewing inside of us. But, as you have shown, that is rarely the case. 

Experience can turn into ignorance, and an unnecessary fight to get the correct treatment begins. So many times people say,

“I’ve been doing this job for 20 years…”

“I’ve treated many people with this condition…”

“I haven’t seen anything like this before…”

Staff sometimes go on the defensive, as if the information you are giving them in order to allow them to make a more effective plan of care is a personal insult to their ability to practice medicine. They may refuse to talk to your specialist team because they feel they have the experience to be able to figure you out for themselves, and in doing so expect to make the sort of discoveries that took years of testing and hospital stays to understand. Why?

Please accept that it really is as complicated as it looks. 

Follow this journey on Trying to Get a Life.

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Saying Goodbye 'With Love': A Tribute to Christina Grimmie From the Rare Disease Community

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On Friday, June 10th, Christina Grimmie, age 22, was fatally shot after a concert in Orlando where she was doing a meet-and-greet with fans. Christina was a talented and successful vocal artist, who placed third on the popular television show “The Voice,” and toured with artists such as, Selena Gomez and Rachel Platten. She was also a supporter of the rare disease community and performed at the 2015 Global Genes Tribute to Champions of Hope last year.

In the wake of this senseless act of violence, the rare disease community came together to share their heartfelt tributes and goodbyes to a wonderful artist, advocate and friend who will live on in the hearts and memories of many.

“I first met Christina at the 2015 Global Genes Tribute to Champions of Hope where I was being honored as the 2015 RARE Champion of Hope Teen Advocate. I was so nervous, yet excited and had absolutely no idea what to expect. I began the walk down the blue carpet with cameras flashing in my face and people pulling at me for interviews. I clung to my fellow honoree and friend, Madi Vanstone. I’m sure I looked like a lost puppy or a fish out of water. That’s when I turned and saw Christina walking down the blue carpet, confidently just doing her thing — posing, working the interviews, totally calm and in control.  

After both of us were finished she came over to me and asked if this was my first time ‘doing a carpet,’ I nodded anxiously. She told me not to worry about it, that ‘it [would] probably get easier every time.’ (She didn’t want to over promise.) We then had a nice little chit chat about hair dye and I felt better about everything. This was the moment I knew we would become friends.

That’s just the kind of person Christina was (it’s heartbreaking to go from saying ‘is’ to ‘was’ about a person so lively and spirited). If she saw someone in need of help, she was the first one there. Whether small, like a freak out over a first time ‘doing a carpet,’ or something big like coming to the Global Genes Denim Dash just to be supportive of the cause, without regards to any publicity. I’m lucky I was able to have called Christina a friend and to have known her and her family even for the short time I did. She was so humble, witty and bighearted. Her faith was unshakeable. She will most certainly be missed.” – Shira Strongin, Founder/Activist: Sick Chicks and Chair at We Are More

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Savannah, christina, and shira at the global genes demin dash
Savannah Orth, Christina Grimmie and Shira Strongin at the Global Genes 2nd Annual Denim Dash.

“I never had the pleasure of meeting Christina, but I can tell you that in the rare disease community, she was known for her kindness just as much as her incredible talent. Recently I watched a video of Christina performing at the 2015 Tribute to Champions of Hope in, stating she looked around she saw ‘amazing people that work so hard and keep pushing on to create awareness.’ Through her devotion to the rare community, she truly became one of those people. Christina was one of the first supporters of a project I’m working on called ‘We Are More,’ an initiative hoping to change the way young adults with illness and disability are seen by society. She really wanted young people with illness and disability to continue to have ambitions, dreams and hopes for the future. The fact that she had so much faith in our mission to empower young people and encourage them to dream makes it all the more tragic that someone robbed the future hopes and dreams of hers. Although Christina’s life was ended by a senseless act of violence, the impact that she made on the rare disease community will never fade. I know I’ll always be thankful she believed in us.” — Emily Muller, Founder/Activist: Emily’s Fight and Lead Communications at We Are More

“[Christina] was a wonderful, beautiful person inside and out, both on stage and off. She was an incredible inspiration for the rare disease community in her too short life. She was an emblem of youth and advocacy. And in that aspect, we were one and the same.”  – Ben Lou, Member At Large: We Are More and [Christina’s] “favorite person.”

Christina’s Mother, Christina’s Father, Ben, Christina at the Global Genes 2nd Annual Denim Dash - image provided by Ben Lou
Christina’s Mother, Christina’s Father, Ben, Christina at the Global Genes 2nd Annual Denim Dash.

 

Jesse and Christina at the 2015 Global Genes Tribute to Champions of Hope
Jesse and Christina at the 2015 Global Genes Tribute to Champions of Hope.

“The world knows Christina through her videos and music. I was fortunate to get to know the young woman behind the voice. Christina was goofy, caring and devoted to her faith. At the Global Genes Tribute to Champions of Hope, where she gave an impromptu a capella performance (due to sound issues), she coolly laughed off the technical difficulty stating ‘the piano was just a stage prop.’ That was Christina, seeing the silver lining to everything. Her sound will be missed, but her legacy of compassion will live on.” — Jesse Marimat, Patient Advocate

Christina was the type of person who you could meet and feel like you’ve been her friend for years,” [Travis] explains. “She had a diamond heart and was so giving. I only had the gift of knowing her for less than a year, but her charisma, talent, and enthusiasm for life were inspiring to me far before I had the pleasure of calling her my friend. Her legacy will continue to touch lives forever. She and her family are beloved by so many and my deepest prayers go out to them, as well as all of her friends and fans.” — Travis Flores, Patient Advocate, Writer, Actor, Philanthropist (in a statement to Entertainment Tonight)

Christina and Travis at the Global Genes Gala and the Global Genes Denim Dash
Christina and Travis at the Global Genes Gala and the Global Genes Denim Dash.

 

Christina and Aleem at the Global Genes Tribute to Champions of Hope
Christina and Aleem at the Global Genes Tribute to Champions of Hope.

“I had the honor of performing with Christina at the Global Genes Gala in Newport Beach last year. Her performance that night is one I will never forget. While she was playing her set, her piano gave out due to technical difficulties. This is an uncomfortable situation to be in while hundreds are watching, but Christina was unfazed. She quickly reacted by grabbing the mic and delivering an a cappella performance that left the crowd in awe and garnered a well deserved standing ovation. Christina was a true professional but more importantly, a true artist. She touched the lives of many through her kindhearted personality and unbelievable raw talent. Her music will live on forever.”  — Aleem, Singer/Songwriter

“For years, Christina Grimmie had always been the beautiful voice with the captivating persona that I’d watch YouTube videos of on repeat. It wasn’t until last September that I began to see the girl behind the beautiful voice. The girl who spent her free weekends at charity events, who lent her platform to those who had none. I actually met Christina through a charity, Global Genes. She was at their 2015 gala as a guest, friend, and performer. After a great couple of songs, she was ready to sing again when, completely out of nowhere, the audio stopped working. It reminded me of a Michael J. Fox quote, ‘Things are going great; then you hit a wall and things change. I think it says a lot by how you react to that.’ And as everyone in the audience was waiting to see how this tiny, beautiful musician would react to no music, she laughs it off and puts everyone at ease, and continues to happily sing a capella, and man can she sing. In the short while I was able to live in her light, I didn’t have a worry in the world. By being in the same room as her, I felt safe and comfortable. She was one who saw everyone as an equal, and who showed her faith through her actions. You could tell by the love, compassion and acceptance that she welcomed you with. It’s my greatest hope that I can honor Christina by living my life as she lived hers: completely, brightly, and confidently, even when the music goes out.”– Madison McLaughlin, Actress, Advocate

“We are heartbroken to hear the news about our friend Christina Grimmie. She was extremely talented with such a kind heart. She used her platform to not only increase positivity in this world, but to help raise awareness and funds for numerous causes. Christina was a selfless rare disease activist and has left a lasting impression with personal friendships she made in the rare community.We will never forget how she silenced a room and moved people to tears with her amazing acapella performance at the Tribute to Champions of Hope last year.  She has left an untouchable legacy and will be greatly missed. Our thoughts are with her family and friends.”Global Genes

Christina generously supported the entire rare community. If you can, please consider giving back by donating to her family and supporting them through this difficult time.

Or, consider signing this petition that would help Christina be remembered in the next Legend of Zelda game, which was her favorite game of all time.

Christina Grimmie Tribute Performing (2)
Christina Grimmie, March 12, 1994 – June 10, 2016
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I Have a Rare Disease, but It Doesn't Have Me

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Dear Rare Disease Patients,

I struggled with ongoing lung symptoms for two years. I was referred from one specialist to another without any clear diagnosis. I donated my share of blood for testing, and I have mastered the stillness and calmness of CAT scans. My emotions have become immune to the process of new doctors, new tests, new procedures and new surgeries.

I know the process of checking into the ER. I can rattle off my medications without looking at the note card in my wallet. I remember to always have a hospital bag packed with a cell phone charger, a movie and my own pair of socks. I can navigate the hospital better than I can my own college campus. I know my health insurance policy number, as well as the phone number. I have waited to receive a room until 3 in the morning, and I have adorned the ever-fashionable hospital smock with multiple plastic bracelets. I have managed to become accustomed to a lifestyle I did not choose.

Eventually, I was diagnosed with dendritic pulmonary ossification. These sounded like scary and unfamiliar words. I remember I had to ask my doctor to explain what this really meant because I was taken aback. I was told my lung tissue has bone fragments or calcification deposits growing. I was also told my lungs form cavities or holes in addition to small nodules that turn into scar tissue. The scar tissue prevents my lungs from receiving oxygen unlike where healthy lung tissue disperses oxygen to the rest of the body.

Angie lying on a bed in the hospital
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Angie lying on a bed in the hospital

I did not grasp the seriousness of this condition until I was informed it’s an orphan disease and is normally seen in the elderly. I was told my condition falls under the category of an “Interstitial Lung Disease” and there was not a cure.

I felt like a rare and unusual case, but that is because I am. I am an entity composed and comprised of a disease that is not known. I am the possessor of a body that has a disease without a lot of knowledge or background. My disease does not have cure or an effective treatment.

There are days when I thought, “How this could have happened to a person who ran five to six miles a day four to five days a week?” I thought about how unfair it was for me to have to spend more time at appointments than in my junior year college classes. I thought, “How could have I been dealt such an unfair hand?”

Yes, I have a disease. Did I chose an orphan disease? No. Did I want my quality of life to be drastically altered? No. Did I want to adopt a schedule centered around nebulizer treatments and medication? No. Did I like going to hospital once a week for four months? Heck no. Did I want to educate my doctors on my disease and new symptoms? Absolutely not.

I have a disease, but disease does not have me. The disease will not tighten its grip because it is one of a kind. I will not take the label of being the sick girl or the sick student or the sick friend. I am not going to let the unknowing-ness disassemble my strength. I am only at the beginning stages of this disease, not at the end, and I am not going to let the ambiguity and uncertainty become a resident in my mind. I still have dreams and aspirations of becoming a child life specialist, and frankly, that dream is more magnified and crystallized now than it ever has been. This disease may be a rut in the road, but it will definitely not become a root of my authenticity.

I have been told that the prognosis is unknown, that a treatment is not established and that a cure has not yet been developed. This may seen disheartening, depressing and hopeless to some, but I have my voice, my updates on symptoms and my follow-ups that can pave the path of a possible treatment or a delay of the disease.

I can help those who are not yet diagnosed, and I, right now, can acknowledge the fear, the vagueness, the patience running thin, and the disbelief of Interstitial Lung Disease patients with dendritic pulmonary ossification.

Sincerely,

A Fellow Rare Disease Patient

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. Check out our Submit a Story page for more about our submission guidelines.

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What the Other Rare Disease Moms in the Waiting Room Helped Me Realize

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Perspective is everything.

While at the clinic yesterday for a rehab doctor appointment, we were told again that our daughter would never walk independently and that we should definitely stop focusing on this as a goal. We were also told she would never speak clearly enough for non-family members to understand her, and that we should consider a communication device. I told this physician, “We’ll see,” but I was feeling defeated.

As we were leaving the office, five mothers commented on how they would be overjoyed for their child to someday use a walker with such finesse as does our daughter. And I felt an incredible gratitude as I looked down at my spunky, sweet girl pushing her hot pink walker past the wheelchairs, and also a sadness for these mothers’ hearts.

I wondered how many of these parents had also been told about their child’s limitations that day instead of being told of their child’s value.

A sixth parent confided in me, with teary eyes, “My son used to have a walker like that, but now he has to use his chair. He has a degenerative disease.” I glanced over at him. He was beaming with the widest smile I’d seen that day. Her son looked happy, but his mother was so consumed with sadness that she didn’t seem to notice. “He looks like such a happy boy,” I commented. His mother might not have considered that other children (mine included) also suffer from degenerative diseases and that I sometimes have terrifying images of our future scream through my head. Her son was definitely not one of these images; he was a joyful light.

Like all rare kids, our daughter will write her own story — not a rehab physician.

She may or may not walk independently some day. We’ll see. But most importantly, she is a bright light in our world.

Anneliese in a field
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Anneliese, Gia’s daughter.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Real People. Real Stories.

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