Hannah Wingert

@hannah-wingert | contributor
Hannah Wingert is a mom of four. She and 3 of her 4 kids have Ehlers Danlos Syndrome. She blogs about special needs, chronic illness, parenting, and life in general at sunshineandspoons.com. She loves reading, writing, sewing and chai lattes.
Hannah Wingert

What Chronically Ill People Want You to Know

Just about everyone who has a chronic illness fights not just their illness, but the preconceptions and judgments of their friends, family and even complete strangers. Stories like this happen way too often. I asked people on my Facebook page, in the Spoonie Mommas group and the Sunshine and Spoons group what they wish people knew about their chronic illnesses. The answers were pretty eye-opening. If you love someone with a chronic illness of any kind, read this. For them. You’ll come away with a greater understanding of what they are going through every day.   For me personally, I wish people knew I feel like I have the flu just about every day. Imagine that… waking up in the morning aching intensely all over, so exhausted that you can barely put one foot in front of the other and it gets worse throughout the day. Now imagine waking up like that every single day and knowing it will never get better. I also wish people knew that while yes, I’ve had Ehlers-Danlos syndrome my whole life, it has gotten worse, especially in the last few years. I’m not just faking it and I’m not trying to get attention. I did not get worse because I got diagnosed, I got diagnosed because I was getting worse. Here’s what everyone else had to say when I asked them what they wished others knew about their chronic illnesses… “It sucks big time.” – Caroline P. “Fatigue is different than tired. My aches and pains aren’t like the normal aging ones you say you have too. I won’t ever ‘get better.’” – Meagan P. “I have other things to talk about! Everyone’s first questions when we have a chat is on my hip and progress. I do appreciate the care and concern, but at some point it becomes part of just how I do and doesn’t need to be a major topic of every conversation.” – Jen DeFrates from Heaven Not Harvard “It’s not a joke and it is not pretend.  It is painful, and I am not trying to get attention! I would not wish this on anyone.” – JulieAnn S. “It’s like fighting a losing battle somedays! And if I’m having a flare-up (as I am now and have been for at least the last two months), they don’t want to hear about it and want me to act as if I’m fine. It’s so frustrating!” – Tricia M. “It changes everything.” – Darci Lopez from Life Unplanned “Stop saying, ‘I hope you feel better.’ I never will be free of this. I would prefer you ask if today is a bearable day or a tough day because it shows a sense of understanding.” – Ashley B. “There are days that hurt so badly you can’t think and days where the pain is barely noticeable. On those days where the pain is barely noticeable, I get to do more, but usually pay for it the next couple days or even so much as a full week later.” – Carrie E. “Just because I’m not actively complaining about feeling terrible or being in pain doesn’t mean I feel good. I just don’t want to constantly whine and complain or talk about it with people who don’t really care. In fact, I’m probably not going to mention how I feel unless you genuinely ask.” – Tiffany L. “I never know how I’m going to feel from one moment to the next, and it will always be this way for me…for the rest of my life.” – Chrissy N. “The amount of and severity of pain I fight through to do everyday stuff. Despite me looking normal (ha, or a hot mess), I still fight a hidden battle of pain. But I do it with a smile and joy, because this girl wins every day. Sometimes, I feel like a straight-up warrior after I successfully complete a day.” – Karise D. “That it’s genetic. I didn’t just ‘come down’ with it out of nowhere and trying probiotics or whatever else they are selling isn’t going to miraculously cure me of it. I am who I am. If you don’t like my genes, then stay out of them. Pushing your ‘cure all’ on people with genetic conditions isn’t going to help us.” – Keri C. “I’m not faking, over-exaggerating or complaining too much. And if there was a magical cure, I would’ve found it by now.” – Vee H. “I’m not exaggerating when I say I live with pain every day. Just because you can’t see my disability doesn’t mean it’s not real. Please don’t look down on me or judge me until you’ve walked in my shoes.” – Christine F. “It is real, and the pain is awful. If there was a cure, I would certainly seek it. I deal with pain daily and every second of the day or night. I try to smile and enjoy a good laugh, but on a daily basis that is not reachable. I stay home a lot because I do not want to be around people that think this is not real.” – Susan L. “The fracture of relationships and how difficult it is for kids especially who are isolated from their illness. As the rest of the world moves forward, they are left behind. For parents, the constant canceling and bargaining that goes on on a daily basis between illness and life.” – Kathy T. “How desperately heartbreaking it is to realize your old life is over and you must come to terms with a new you.” – Sally C. “It’s hard enough for me to deal with the pain and side effects on a daily basis without working to try and convince or console everyone around me. I would rather just be prayed for and accepted for who I am than either be pitied or judged.” – Meg S. “Just because they see me having a good day, that doesn’t mean I’m ‘getting better,’ and I’m not sad about my illnesses and really don’t need pity. It’s a normal part of my life and is really difficult sometimes, but acknowledging and accepting my disability doesn’t mean I’ve given up on living a full and happy life. – Melanie M. “I’m not going to get better. Please stop telling me I will if I want to.” – Sara G. “It is invalidating to compare everyday aches and pains to the severity of the pain one feels when their joints slip out of place or muscles or connective tissues spontaneously rip. And even though we are often still walking around, that doesn’t mean we’re OK. Often it means we are drugged beyond reason, likely taped or braced together and extremely good at managing pain because we don’t want to miss life by staying in bed every time we are in agony.” – Dotty Q. “They have no idea how much I hide my pain. I don’t talk about my pain because I don’t want to sound like I’m complaining. I keep so much to myself and it’s lonely being me and having no one to talk to. How I quietly cry from the pain. But on the outside, I look fine.” – Dreena M. “I want people to know I am not going to ‘get better.’” – Ginny W. If you have a chronic illness, what would you add to this?  If you don’t, did you learn anything about having one? This post was originally published on Sunshine and Spoons. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via sapfirr.

Hannah Wingert

What It's Like To Be a Kid With Ehlers-Danlos Syndrome

At least three of my four kids have Ehlers-Danlos syndrome (EDS), which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it. Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises. But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder. Averie, 10 years old (hEDS) – “The hardest part is telling other kids that I can’t do certain things, like play on the monkey bars, or do everything that my classmates are doing in gym class. EDS hurts a lot. It’s frustrating that you can’t do as much as your friends, and that postural orthostatic tachycardia syndrome (POTS) is really frustrating because I just have to explain myself more when I’m getting up more slowly than others, and having to draw attention to myself.” Anonymous, 7 years old – “I feel stretchier. It makes me feel like I’m the special kid. It’s because I have something that other people don’t and that’s why I’m feeling that way. It affects, like, sometimes I try to run and then part of my body hurts and then I stop.” Anonymous, 6 years old – “I just feel like I’m extra good at gymnastics, and I wonder why other kids don’t have their knees ‘fall off’ like mine.” Kyle, 9 years old (hEDS) – “It doesn’t really bother me, it just makes me who I am. The only thing I really hate is when I go dizzy and fall.” Harriet, 8 years old (hEDS) – “Unhappy. I want to be normal. It’s horrible being in constant pain and it’s very unfair. I shouldn’t have to deal with all this at such a young age. It is spoiling my childhood.” Nicholas, 11 years old (hEDS) – “Awkward and painful.” Charlotte, 4 years old (hEDS) – “I fall over loads, and I’m always tired. I wish I could run about like my friends without pain.” Nicole, 17 years old (hEDS) – “I hate life. I’m constantly in pain, and I want to be like my friends. I hate that no one believes me (apart from family, close friends, and Professor Grahame) and I want to be able to work and earn money like my friends.” Dylynn, 11 years old – “I hate being clumsy, and I hate the knee braces, but I love the aqua therapy.” Kaitlyn, 16 years old (hEDS) –  “I’m lonely and in pain, nauseous, weak, extremely fatigued and foggy headed, dizzy and feel like passing out. I haven’t been to school in three months. I’m tired of it all!” Brandi, 6 years old (hEDS) – “It’s not bad. When my hands and feet are sleepy ( numb) is what I hate the most. Oh, and my legs. They stay tired a lot.” Sebastian, 5 years old (hEDS) – “I don’t like it. I wish I didn’t have pain. It’s not fun, and my medicine is gross.” You can follow Sebastian’s journey at My Sweet Zebras. Jack, 7 years old (hEDS) – “I don’t like that I’m so different and can’t keep up with my class. It makes them be mean to me sometimes because I’m not as fast as them and I can’t play football or ride a bike like everyone else. I don’t like being in pain and tired all the time or having to take medicine every day, especially when it doesn’t work.” Jessica, 4 years old (cEDS) – “It’s too many doctors. I hate my boots ( AFO braces). I’m tired of getting hurt.” Kyler, 7 years old (cEDS) – “It’s pain. I want to run with my friends and play sports. But it hurts.” Simara, 12 years old (hEDS) – “I wish I didn’t have EDS, Mummy. Make it go away. I hate having to wear my braces. The kids ask me too many questions [about] why I have to wear them. I hate my EDS.” Nikolas, 9 years old (hEDS) – “It hurts me. I love to draw, but it hurts my hands. I hate when bits go the wrong way, like my elbows and feet. I hate when my shoulders won’t move.” Mathew, 7 years old (hEDS) – “I hate that it’s made me stretched ( marfanoid habitus) and that I bruise and get nosebleeds all the time. I can’t walk far and running really hurts. I hate sports but my friends like it so I feel left out.” Jack, 6 years old (hEDS) – “I don’t like my wobbly ankles and wrists and having no teeth like my friends, but I like showing my teachers how I can pick my nose with my tongue.” Luke, 4 years old (hEDS) – “I fall over a lot which is OK, but not when my face gets cut. I don’t like wearing my boots ( braces) with shorts. I can’t hold my pencils like my friends at school, too.” Abigail, 8 years old (hEDS with vascular crossover) – “EDS makes me feel unique. It feels like I am hiding a secret because I don’t really tell people that I have EDS. People just don’t ask, so I don’t tell. Sometimes I am sad when I can’t play or do other activities that my friends do.” Kyler, 10 years old (cEDS with vascular crossover) – “I don’t like when people stare at me all the time ( he uses forearm crutches), or that people don’t believe me ( that he has EDS). I miss being a ‘normal’ kid. But I know God made me this way for a reason.” Dax, 7 years old (cEDS) – “It feels very sad. l have to be sick every single day of my life. I feel like I have the flu every day. It feels like stabbing.” Katie (my daughter), 9 years old (hEDS) – “I’m different than my classmates. I like EDS because my class likes to see what I can do ( um, we’re going to have to have a talk about this!). I don’t like that I hurt all over somedays.” I also talked to Kathy, whose 12-year-old daughter, Ellen, has hEDS with a vascular crossover. Here’s what she had to say: “Looking at the photos of Ellen… she looks healthy, happy and unaffected by her illness. The other day, she opened two packages ( gifts), posed for photos and then was suddenly ‘done.’ Shortly after I took the photos, Ellen had a complete emotional meltdown. She was sobbing about how badly her body hurts and how she can not get away from the pain. It is frustrating when moving so little can cause her such distress. I, as her parent, feel helpless and heartbroken about this.As a parent, we want to help our children any way we can. I have no idea how I can do that. I can’t take away the pain. I struggle to help her find ‘comfort.’ She agreed to take a bath and just relax in the tub for awhile. I could tell she skipped her pain meds as she was completely, mentally undone. I let her sleep in that day, and it completely slipped my mind. Obviously the Gabapentin is working. I just don’t think it is at the level it needs to be quite yet. My heart breaks for her. This type of pain for a 12-year-old is difficult to describe, understand or help. I have watched my child crash and be crushed by the weight of the pain that comes from EDS. I have watched her miss school, day after day after month after year. Her friends continue to live life. She doesn’t know how to find her place with them anymore. The anxiety and isolation are horrific. It is more normal for her to sit in a doctor’s office and have a relationship with her providers than to sit in a classroom with friends. That speaks volumes to what life with EDS is like. There isn’t a day that she is not struggling. Not a day where her monstrous pain doesn’t rear its head. Not a day she doesn’t fight tears and sadness for everything she is missing out on.When I asked Ellen how EDS has affected her life… She replied ‘what life.’ Heartbreaking.” You can follow Ellen’s journey at Empowering Ellen. So, right there are 25 reasons why I’m working so hard to raise awareness and research funds for Ehlers Danlos Syndrome. Because these kids deserve it. You can find Hannah raising awareness for EDS at Sunshine and Spoons. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Ingram Publishing

Hannah Wingert

5 Things I Need From You as Someone With Ehlers-Danlos Syndrome

Having a chronic illness is hard on so many levels, but having a good support system can make the difference between being able to handle the life or having it take you down. If you know someone with a chronic illness, then you know that sometimes it can be hard to know how to be supportive, especially if your loved one has recently received a diagnosis. On the flip side, it can also be hard to tell your friends and family what you need from them as a spoonie. It’s difficult to admit that something is wrong. Here are five things I need from you as someone who has a chronic illness: 1. I need to know that I’m not a burden. One of the hardest parts of having Ehlers-Danlos syndrome is accepting that I need help just to get through most days. Often, I feel like a burden to you and others around me. 2. I need to know that you still love me. My body is falling apart and sometimes I feel like I’m too “broken” to be loved. 3. I need gentle hugs. Just because I have pain all over my body and it can hurt to be touched doesn’t mean I don’t still need it. Give me a hug now and then — just be gentle. 4. I need to know that you don’t think I’m lazy. I feel so guilty and lazy for laying on the couch while someone else cleans my house or takes care of my kids. Please reassure me that I’m not being lazy, and then move on to the next item in this list. 5. I need to know that it’s OK to take care of myself. The person who’s the hardest on me is me. Please let me know that it’s OK and necessary to take care of myself instead of pushing myself past what I can handle. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by anyaberkut

Hannah Wingert

Being a Special Needs Mom With Special Needs

I have four kids. Katie (8 years old) has Ehlers-Danlos syndrome, asthma and a visual tracking disorder. Nano (6 years old) has Ehlers-Danlos syndrome, asthma and eczema. Anna (4 years old) has amblyopia, and Davy (2 years old) has Ehlers-Danlos syndrome, asthma, gastroesophageal reflux disorder (GERD), severe eczema, hypotonia, mild developmental delays and is a tubie graduate. And then there’s me, the source of my kids’ genes. I have Ehlers-Danlos syndrome, GERD, asthma, eczema, eosinophilic esophagitis, postural orthostatic tachycardia syndrome (POTS), unexplained sudden anaphylaxis episodes and PTSD. I’m what is referred to as a spoonie. On the outside, we look like a “normal” family. But if you look a little deeper, you’ll see the chronic pain that affects Katie, Nano, Davy and me, the kitchen cupboard overflowing with medications, the ice packs stacked up in the fridge, the severe chronic fatigue and brain fog that surrounds me everyday, my walkers (a basic one I keep at home and one with a seat that I keep in the trunk of my van) for the days I have a hard time walking due to pain or weakness and a handicap parking placard stashed in the glove compartment of my minivan. Between the five of us, we see specialists for GI, genetics, asthma and allergy, EDS, orthodontics, orthopedics, ophthalmology, pediatrics, occupational therapy and physical therapy. We drive one and a half hours to most of our doctor appointments and often spend two or three days a week at appointments. This is what my day planner looks like during an average month. With so many medications and special needs in the home, it’s very important that I stay organized. The kids and I all have pill boxes that I fill weekly. I keep each child’s medications in a cosmetic type bag along with a list of what they are and their dosages. I also designed a medical binder so I can keep track of each one’s needs.  I had to learn all of this the hard way when I ended up spending the night in the hospital after an anaphylaxis event. It was then that I realized I was the only person who knew how to fully care for my kids’ medical needs, and I needed to be prepared for the next time I was away from the kids unexpectedly. Being a mom of kids with chronic illness when I have special needs of my own is…well, let me put it this way: I’m freaking exhausted. Let’s talk mom guilt for a minute. Every mom deals with this at some point, and mine consists of feeling guilty that my kids inherited my faulty genes plus feeling guilty that I can’t be the mom I want to be for my kids due to my chronic illnesses. I would love to be able to take my kids to the park and play with them outside, but thanks to my POTS, I get really sick if I’m outside for very long. I wish I could run around with my kids, but most days I have to tell them that they can only touch me gently because “mommy has owies.” For them it’s normal to see their mom frequently parenting from the couch and wearing braces on her knees, back, wrists, thumbs, etc. I hate that that’s their normal. The whole “put your oxygen mask on before you help someone else with theirs” thing… I’ve had to embrace it as my health has worsened over the last few years. That concept is hard for most moms because we tend to put our kids’ needs above our own, but if I don’t take care of myself, I literally can’t take care of my children. On a typical day, I’m so exhausted by noon that I can barely put one foot in front of the other. At times, it’s been so bad that I’ve fallen on the floor and been unable to get back up. My speech gets slurred, and I have a hard time forming a compete sentence. My younger sister recently began working for my family as a PCA or Personal Care Assistant for the three kids who have EDS. It’s hard for me to accept that I need help just to make it through the day and care for my kids because I want to be able to do it all myself. But since my sister became our PCA, my fatigue and pain levels have dropped quite a bit, and I’ve actually been able to enjoy my children more. For my kids’ sake, I have had to let go of my pride and accept that I need help functioning in day-to-day life. Taking care of myself is not only important so I can continue to care for my kids, but also because they inherited EDS from me. They’re watching me to see how to live with this genetic disorder, and if I don’t model self-care, they won’t learn how important it is for them to do the same. Someday, they will probably need help getting through each day just like I do, and I need to teach them that it’s OK to ask for help and to accept it when it’s offered. Being a special needs mom with special needs is hard, but not impossible. Follow this journey on Sunshine and Spoons. We want to hear your story. Become a Mighty contributor here. Lead Thinkstock photo via ChristenLola.

Hannah Wingert

A Letter to the Mom Whose Child Just Got a Feeding Tube

To the mom whose child just got a feeding tube, Right now, you’re probably pretty overwhelmed. You’ve just been thrown into a world you never expected to be a part of, and that can be scary. There are tubes and syringes, feeding schedules and pumps, and possibly a stoma if a G, GJ, or J tube is involved. I’m not going to tell you it will all be easy. There can be both emotional and practical challenges. But it can get easier. The first month or so after your child gets their feeding tube can be hard because you’re still getting used to everything. But for me, it soon became second nature, and I got into a rhythm with the feeding process. In my experience, the person who is sometimes hardest on you throughout your journey is you. Give yourself grace. Process what you and your child are going through when you need to, but then get back up and keep going. If mom-guilt starts to creep up on you, remember this: you are doing what is best for your child. Try not to worry about all the things that could happen, like granulation tissue or accidental tube pullouts. Take each day as it comes and deal with each issue as it pops up. Educate yourself. Learn as much as you can about tube feeding and your child’s condition, if you know what it is. You’re a medical mom now, and you’ll manage your new normal much better if you’re prepared and organized. Don’t be embarrassed by the stares and questions you’ll get from (hopefully) well-meaning friends, relatives, and even strangers. Smile back or use the moment to educate someone who doesn’t know about feeding tubes. Find your tribe. You are going to need support and understanding from people who are on a similar path as you. You’re going through a unique experience most people aren’t going to be able to understand. Talk to your friends and family about what you’re going through. Don’t close yourself off from a potentially valuable support system. They may not understand everything, but there’s a good chance they want to support you any way they can. Take a deep breath. You’ve got this, momma. Follow this journey on Sunshine and Spoons. We want to hear your story. Become a Mighty contributor here.

Hannah Wingert

Common Symptoms of Ehlers-Danlos Syndrome

After three of my kids and I were diagnosed with Ehlers-Danlos syndrome type III (hypermobility), I knew that I had to instill a good attitude about it in my children so they wouldn’t grow up bitter about their condition. What better way to do that then to laugh about it? So, for my kids (and all you other zebras out there!), you know you have Ehlers-Danlos syndrome when… 1. Your joints go out more than you do. 2. You snap, crackle and pop just like your favorite breakfast cereal. 3. You spend 15 minutes drooling over all the braces in the pharmacy department at Walmart. 4. You visit the local nursing home and find yourself jealous of the residents’ tricked out walkers. 5. You can dislocate or sublux a joint while just sitting there doing nothing. 6. You can dislocate your thumb by pulling up your sock. 7. The ER doctor has to ask how to spell your disease and then Googles it. 8. Your geneticist uses you to teach other doctors how to run the Beighton scale on patients and diagnose EDS. 9. You have to pop a few joints back into place when you wake up in the morning. 10. You have “brace lines” instead of regular tan lines. 11. You can only regulate your body temperature about as well as a newborn. 12. Brain fog means that you have to write down everything. 13. Your 2-year-old gently touching your leg can make your eyes well up with pain because your entire body feels like an intense bruise. 14. An itch on your back is never a problem because no matter where it is, you can reach it. 15. Your friends look at you like you’re speaking another language when you rattle off big words like “Ehlers-Danlos syndrome” “Eosinophilic Esophagitis” and “Postural Orthostatic Tachycardia Syndrome.” 16. You live in fear that you’ll get pulled over and have to take a field sobriety test because there’s no way you’re capable of walking a straight line. 17. You’ve ever heard “it’s all in your head.” 18. A trip to the dentist means your jaw will be at least partially dislocated and sore for a while. 19. You’re obsessed with anything that’s zebra print! We want to hear your story. Become a Mighty contributor here .

Hannah Wingert

A Letter to the Well-Meaning Doctor Who Stole My Hope

Dear Well-Meaning Doctor, You saw me struggling to hold it together in your office that day. My son, Davy, was 6 months old, and his many medical needs were taking their toll on me as I navigated my new life as a  medical mama . He hardly slept, cried almost constantly, turned blue and choked multiple times a day and had a feeding tube. I was exhausted, and the mom guilt from not being able to balance his needs with the needs of my other three children was wearing me down. You saw all that, and you made it a point to look me in the eye and ask me how I was handling everything. I saw the concern on your face, and I knew you cared. “The only way I’m surviving right now is by reminding myself that it won’t always be this way,” I said brightly, trying to pretend I was happy even though I was absolutely miserable. My parenting mantra that had gotten me through rough patches before was “This too shall pass.” I knew Davy’s situation was unique, but I was applying my mantra to my daily life with him liberally anyway. It was my hope and my saving grace at that point. Gently, you replied, “You need to realize that it probably will always be this way.” I was stunned. I wanted to cry, but I didn’t. I got through the rest of the appointment and fell apart the moment I got back in my van. I know you meant well. I know you were trying to prepare me for what could lie ahead. But you stole a piece of my hope, and it took me months to get it back. When Davy was 10 months old, we  switched to a different health care system . I wish I could take him back to see you again so you could see who he is now. You saw a malnourished, screaming, sickly baby with significant delays. Today, you wouldn’t recognize this sweet, lovable, 2-year-old boy who laughs all the time and loves to give hugs. I can’t go out in public without multiple people swooning over how adorable and personable he is. He’s an amazing little boy who only has mild developmental delays and whose medical concerns are mostly under control at the moment. I was right. It did get better, and it’s not as hard as it used to be. The next time you come across a mom like me, please don’t take away her hope. It might be all she has left. I’m not saying you should lie about a prognosis, but you don’t know what the future holds for her little one. Realistic hope is still hope.

Hannah Wingert

Letter to the Public Health Nurse Who Helped Family With Ehlers-Danlos

Dear Public Health Nurse, You saved me. You probably aren’t aware of the impact you have had on my family, but I want to tell you that you saved me. You first started coming to our house two years ago to do weekly weight checks on my son Davy, who had recently gotten his G-tube. You rejoiced with me over each ounce that Davy gained and mourned with me over each ounce that he lost. You noticed how my daughter Anna was also very tiny for her age and started weighing her, too, taking a load of my mind as I could finally see tangible evidence of her slow, but steady growth. But, you didn’t just weigh Davy on your portable scale and then leave each week. You stayed for a while, and you let me talk. You showed me how to deal with the stress of being a medical mama. You let me cry and sometimes, you gave me a hug before you left.  You gave me ways to balance Davy’s care with the needs of my three older kids. You helped me figure out how to handle sweet little toddler Anna when she acted out to get attention and made me pull my hair out in frustration. You researched and printed off articles for whatever parenting issue I was currently dealing with, and you gave me valuable information on feeding a failure-to-thrive child. You encouraged me to lean on my friends and my family when I didn’t have the courage to ask for help. “You can do this. You are a great mom,” you said to me so many times, and I knew that they weren’t just empty words. When you hear something enough, you start to believe it. You told my kids over and over again how amazing they are, and how they were such big helpers to me. I watched the pride fill their eyes as they took your words to heart, especially during those times when I couldn’t find the words myself. When my depression started to take control over me, you assured me that there was no shame in asking for help. You are the reason that I had the courage to go to my doctor and get my life back. And when I finally confided to you how my own health seemed to be going downhill, and I suspected Ehlers-Danlos syndrome was the monster wreaking havoc in my family, you immediately took on the extra responsibility of starting the processes and paperwork to get my family the help we need. I’ve heard that having a child with medical needs can make or break a marriage. Mine survived and came out stronger, and I credit you partly for that. If I hadn’t had your support, I would’ve crumbled and my relationship with my husband would have followed. I wouldn’t have survived the last two years intact if it hadn’t been for you. I never expected to forge a friendship with you, but I did and I will forever be thankful for that.

Hannah Wingert

The Value of Coordinated Medical Care in Finding a Diagnosis

When my son Davy was born, I thought everything was fine. He sucked his bottle differently, but I was sure he’d get the hang of it soon. And yeah, he had some dysmorphic features, but they made him cuter. And the crying…well some babies are just fussy, right? But by the time he was a week and a half old, it was obvious that something was wrong. He started refusing the bottle and became increasingly fussy with bouts of screaming. Davy’s doctor quickly exhausted her resources as he continued to worsen. At 2 months of age, he only weighed 8 pounds and was eating 7-8 ounces of formula in a 24-hour period, so she made the decision to hospitalize him. During that nine day stay, Davy had surgery for a G-tube placement. When we left the hospital, we had appointments scheduled with several specialists. Within a short time, our lives were dominated by doctors’ appointments. We were told we were lucky to live close to a world-renowned hospital and clinic where Davy could be seen, but we quickly became disillusioned. Davy’s specialists were not on the same page, and there didn’t seem to be any communication between them. Because the clinic was so big, their offices weren’t located near each other and were usually not even on the same floor. The pediatrician was in a different part of the city completely. Davy was assigned a care coordinator, but she only worked at the pediatrician’s office and wasn’t fully aware of what was going on at his other appointments. After nine months, we were beyond frustrated and no closer to getting answers for Davy’s growing list of health concerns. I was tired of fighting to be heard by the doctors and having my questions dismissed. The final straw was when we were discharged from the hospital after a one-night stay for observation of fever and respiratory symptoms even though his vitals hadn’t improved. The next day, Davy was still very sick and struggling to breathe, so we decided to take him to a different urgent care. The drive to Gundersen Lutheran in La Crosse, Wisconsin was twice as far for us, but we figured we had nothing to lose at that point. I was amazed at how seriously the urgent care doctor took our concerns. She disagreed with the diagnosis of worsening pneumonia he’d received just two days before as his symptoms didn’t fit. We left that visit with instructions to discontinue his antibiotics (which weren’t helping anyway), new ways to treat his symptoms, a RSV diagnosis (which the other hospital hadn’t tested for), and an appointment with a pediatrician so we could get referrals to all the specialists Davy would need to see. Because of his medical complexity, Davy was assigned a care coordinator who attends just about every appointment and is just a phone call away to answer any questions (and I’ve had lots!) I was blown away by Davy’s new team of doctors, and it didn’t take long at all to see the benefits. At the previous health care system, team was the last word I’d have used to describe the doctors he saw. Within a short time, we were getting answers for Davy’s health, and he was showing improvement. He also received a primary diagnosis of Ehlers Danlos syndrome. The pediatric specialists at Gundersen Lutheran work in the same department in close proximity to each other, something that wasn’t possible at the other clinic because of its large size. They have monthly meetings to discuss the care of their shared patients. Many times, we would be at the clinic for an appointment with one doctor, and he or she would want to discuss something with one of his other specialists, so would ask them to stop in during the appointment. At one point, we had three doctors in the room discussing Davy’s care even though we only had an appointment with one that day. The coordinated care includes us as well. Davy’s geneticist once told me I am just as valuable a member of Davy’s team as the doctors are, probably even more so since I am the one who knows him best. These are just some of the benefits we’ve experienced from having doctors who practice coordinated care: They look at the whole picture instead of just the symptoms that go with their specialty, which makes it much more likely to get a diagnosis. They’re aware of the other specialists’ treatment plans and incorporate them into their own treatments. They talk to each other to get ideas for new ways to handle medical care. They are more likely to stay on top of testing and other procedures. The patient and their family feel more engaged and understood because the doctors include them in the process. Have you had an experience with coordinated care or a lack of it? How has it affected your medical care? Follow this journey on Sunshine and Spoons. The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

Hannah Wingert

Tube Feeding My Son in Public for the First Time

The first time I had to tube feed my son Davy in public, I was so nervous, I was shaking. Three-month-old Davy had had an appointment with his GI specialist that day at the clinic 45 minutes from our home. After we were done, I stopped at Target to pick up a few things and realized it was time for Davy’s next feeding. I rolled my shopping cart into the Target cafe and parked it at a table in the corner farthest from the entrance. The cafe was empty except for a nursing mother who sat several tables away from me and had probably also chosen that area for its privacy. Shaking, I laid out a burp cloth and set up everything I needed for Davy’s feeding.  A 60 mL syringe, powdered Alimentum formula, bottled water, a Dr. Brown bottle, a 20 mL syringe of water for flushing the tube before and after the feeding, and an extension tube. Like always, I mixed up the bottle and tried to get a screaming Davy to drink from it for about 10 minutes, with no success. After setting him back in his infant carrier, I primed the 12-inch extension tube with water and unsnapped several snaps on his outfit so I could hook the extension up to his G-tube. Then I picked him up and opened the main port on his extension tube to push the 60 mL syringe into the opening. I was so nervous that I didn’t notice the med port was still open from when I primed the extension, and so, when I slowly pushed down on the syringe’s plunger, formula dribbled out of the med port and down my hoodie and jeans. I quickly pushed it shut and grabbed another burp cloth to wipe off the formula.  Out of the corner of my eye, I could see the nursing mom watching me. In my anxious state, I was sure she was either judging me for not breastfeeding my baby or wondering what in the world was wrong with my son. I got into my familiar rhythm of bouncing and swaying while simultaneously tapping the pacifier in Davy’s mouth with one hand and slowly pushing the formula through the tube with the other. Davy continued to wail for a while until he started to fall asleep. It was then that the other mom spoke. “Excuse me. I hope you don’t mind me asking, but does he have a G-tube?” I was taken aback at her question, as it was not what I had expected, and stammered out an affirmative answer. She smiled at me. “My sister had a G-tube because of her special needs, too.” With that, the ice was broken. I was so relieved to meet someone who understood about tube feeding during our first feeding in public that I could’ve cried. The baby she was nursing was a little boy almost exactly the same age as Davy, although he was twice the size as my tiny, undernourished infant. Like me, she had several older children as well. After three months of feeling like my whole world had been turned upside down, being able to talk to another mom about tube feeding waslike a breath of fresh air. When she was done nursing, she gave me a few last words of encouragement before heading out the door with her baby. Having such a positive experience the first time I had to tube feed in public helped ease my fears about doing so. I was still nervous about it, but eventually, I learned to ignore the stares and answer questions with the hope of educating and raising awareness for tube feeding. We never exchanged names, but talking to the other mom that day at the Target cafe made more of an impact on me me more than she will ever know. Follow this journey on Sunshine and Spoons. The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one kindness. If you’d like to participate, please send a blog post to community@themighty.com. 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.