HERO participant Crosby, celebrating with his HERO medal!
Thank you, CHaD HEROES! You made the 15th annual CHaD HERO a heroic event for CHaD kids. When we had to pivot to a virtual event in 2020 due to the COVID-19 pandemic, we knew that many of our supporters would be up for the challenge, but you exceeded even our expectations.
900 participants from 26 states fundraised, hiked, biked, ran, walked, and completed Virtual Quests over 15 days to support the kids and programs at Children’s Hospital at Dartmouth-Hitchcock (CHaD). Thanks to you, we were able to make the virtual CHaD HERO another success and raise over $517,000 for our Child Life Program, Child Advocacy and Protection Program and more.
CHaD HERO participants are all smiles after completing their virtual HERO activities!
2020 Kid HERO Crew
2020 Kid HERO Crew
For this year’s 15th annual CHaD HERO, 10 outstanding Kid HEROES inspired and encouraged our HERO community by sharing their CHaD stories, creating art and videos, judging our Costume Contest entries, and speaking at our Virtual CHaD HERO Celebration. Our Kid HERO Crew also participated in unique ways raising thousands of dollars for CHaD programs and services. Kid HERO Shannon ran her fastest 5K, Owen walked the neighborhood with his mom and Jasper spent a few days backpacking through the White Mountains with his dad!
2020 CHaD HERO Highlights
We honored Joanna Grossman Miller with the HERO Legacy Award at our Virtual CHaD HERO Day Celebration. This year marked her 15th CHaD HERO. She has participated in every event since the beginning. Congratulations and thank you, Joanna!
Despite the unique virtual format of this year’s HERO, our Food Committee rallied their friends and family to create the Food Tent Faithfuls team. They hosted their own Virtual Quest workout class and raised over $9,000. It was an incredible show of support during a challenging year.
Thanks to Hanover Brick and Brew – Ramunto’s, top youth fundraisers received Ramunto’s gift certificates to enjoy some post-event pizza!
Your fundraising dollars support critical programs and services at CHaD
Be on the lookout 2021 CHaD HERO details at CHaDHERO.org. Registration opens April 28 on National Superhero Day!
HERO committee members participating in the 2020 virtual CHaD HERO!
For a legitimate training plan to run a half marathon you should check out this Runner’s World site which has a range of regimes based on your age, abilities, and intentions.
For an illegitimate training plan, read on, I have some other ideas.
With running or hiking, I appreciate the chance to turn off the mind, sweat a little, and take in the outdoors. With these factors in the balance, there are two workouts that I favor.
Running the Northern Rail Trail
What I love about the Rail Trail: it is flat… it is beautiful…it has no traffic whatsoever. There are rail trails all over New England and locally we have one that runs from Lebanon along the Mascoma River and Mascoma Lake and well into central NH. You can find out more about the Rail Trail HERE (you have to create an account, which is fast and free, and the wealth of information about rail trails across the region is well worth it).
Hiking New Hampshire’s 4,000 ft. Mountains
Hiking can be tough but the views, connection to nature, sense of accomplishment, and lock-step merit badge accumulation tip the scales in favor of heading out. Like the Rail Trail, the degree of workout is completely in your hands – walk slow and smell the roses or jog the flats and scamper the steeps, either way is going to get you the view (and have you feeling it on the stairs the next day). There are 48 peaks in NH that are over 4,000 feet, each with their own flavor, so something for everyone and a standing lifelong challenge to get to the top of each of them. See more HERE.
During the CHaD HERO, everyone is a pedestrian! Whether walking, running, or hiking at some point you’ll probably be sharing a road with drivers who may not be paying attention or driving unsafely. Our motto here at CHaD is “See, Be Seen” and we want you to be a safe and happy HERO! Here are a few tips to help with that:
Wear clothing that is bright with reflective highlights, even in daylight.
Use sidewalks whenever possible.
If there aren’t sidewalks then walk as far to the side of the road as possible facing oncoming traffic.
Use crosswalks if available, even if it means walking a little farther.
Distracted walking can be as dangerous as distracted driving. Put the cell phone away. Think about the walk, not the talk!
Watch for cars coming out of driveways and be especially careful in parking lots.
Supervise children and hold hands with young ones.
Injuries can spoil your walk/run/hike so take some time to plan out your route to avoid potential fall hazards like uneven surfaces. Wear sunscreen or protective clothing if it’s sunny. Using a brimmed hat and sunglasses can not only protect your eyes they can help with solar glare that can block your vision.
Make sure that your shoes are broken in but not broken down.
If you’re prone to blisters in a certain spot consider using an anti-chafing balm ahead of time. Waterproof bandaids or a product like KT tape can be effective for blister prevention as well.
Make sure someone knows where you are going and a time you expect to be back. If walking in a group, have someone with a blinking light in the front and in the back. The person in the back can also be the “sweep” to make sure no one falls behind.
Water and healthy snacks make the walk easier. For little ones, this will be an adventure but consider a bailout plan in case they lose enthusiasm or the weather takes a nasty turn. You can always be a HERO another day!
Whatever you do have fun and know that every dollar you raise is helping kids throughout NH and VT.
A lot of people start strong with all the best intentions of running consistently, but fall short after a week or two. To avoid this, find a beginner 5k plan that works for you (Check out our Beginner Running Plan at runnersalley.com for an example). With the right plan, you will avoid over training or increasing your mileage too much too fast, which are leading causes of running injuries.
Following a plan will keep you consistent and accountable so you will be able to conquer the letdown that happens after a few weeks of starting something new. However, consistency doesn’t mean beating yourself up when life gets in the way. Modify the plan as needed to keep yourself from burning out, even if it means repeating a week.
2) The right shoes are important
Do I need good running shoes? What makes a good running shoe? What happens if I don’t get a good running shoe? These are all great questions. There are so many factors that go in to getting a good running shoe.
Thankfully running specialty stores are here to show you what running shoes are appropriate for you personally. Stop by your local Runner’s Alley and get The Right Fit™ to stay healthy and happy during your running journey. Our staff will help you find the right shoes and all the other gear you might need, including socks and apparel.
3) Warming Up
Take a few minutes to warm up your muscles using a dynamic warm-up. Before you take a step, you want to make sure to prepare your muscles and ligaments to run, open up your joints, and get your heart rate going. From leg swings for your hips and hamstrings, to arm circles to promote good posture, you’ll be ready to go.
4) Keeping the Pace
One of the most challenging questions is “How fast should I run?” When training for your first 5k, it is important to keep yourself moving at a rate where you can keep a conversation. By keeping it conversational, you will keep your heart rate down and allow yourself to run longer. Don’t forget, you are adding time and distance, not speed.
It might be a good way to run with a buddy. Of course, please practice social distancing if your buddy isn’t a member of your household. A running partner will help you keep your mind off of the stresses on your body, keep your pace consistent, and give you accountability!
5) Don’t Forget to Recover
As you finish your run, walk for a few minutes to help your heart rate decrease and cool you down. Then, make sure to stretch and recover after your run. Here is where static stretching can help. By stretching warm muscles for 30-60 seconds, you will improve flexibility. You should feel tension in a stretch, but not pain. If you feel pain in your stretch, back off until you feel tension.
Another great way to help recover from your run and keep you injury free is foam rolling and other tissue manipulation. Foam rolling will break down knots in your muscles and helps improve circulation, making it a great companion with stretching. For some great options, check out runnersalley.com
Don’t stop at your muscles! Rehydrating and adding protein to help rebuild your muscles within 20-30 minutes after your run is important too.
6) Run your Race
Once race day comes, it’s time to shine! You’ve spent weeks preparing for this, so don’t do anything different than you have been doing. If you are at a live race, give yourself extra time to warm up, use the restroom, and be ready to go when your number is called. If you are running at home, know your route beforehand and run at the same time you normally would. Have fun and remember it’s all for a good cause!
When we found out we were having a girl we were all so excited. I wanted a girl. And everything was going well until the end of my pregnancy. I had gotten into this bizarre car accident where a tree fell down around my car while I was driving home from work with no real damage. I felt fine and the ambulance came and Abigail was kicking so I went home. Abigail soon started to slow down and I had heard that that sort of happens towards the end when babies run out of space, but Abigail really slowed down a lot. We were sent to APD for a scan – steady heartbeat but the ultrasound tech could not get Abigail to budge so I was admitted to Alice Peck Day Memorial Hospital (APD). They put a bunch of monitors on me and gave me a sleeping pill and at four or five o’clock in the morning I was woken up and told that I needed to have an emergency C-section.
James, my husband, was told to say goodbye and brought to another room. Abigail was delivered and resuscitated. They said she suffered hypoxic ischemic encephalopathy and she was DHARTed via ambulance to CHaD. I came to right before they whisked her off to to CHaD’s Intensive Care Nursery (ICN) and I got to hold her hand through the box that she was in. Abigail was connected pretty much to everything they could put on her; she was intubated. She had heart monitors and all sorts of things attached to her.
Abigail in CHaD’s NICU
Fortunately I was able to recover from my C-section at Dartmouth-Hitchcock as well. Once I got settled into my room, a team of about a dozen doctors (I think most of them were students) came in and talked to us about Abigail. They said she had a lot of damage to her brain and they doodled on these sketch pads that had a picture of a brain on them to kind of scribble the parts that had damage to her brain and told us what we should be expecting if Abigail were to survive. I remember the Doctor who first started telling us this was wiping tears away himself as he told us what had happened to Abigail.
She had failure in every organ and was on every form of life support that the hospital has to offer. We made sure Abigail had run through the complete three days of cooling and stayed by her side as much as we could. I remember a photographer came and offered free baby photos for a new family photo shoot for us in the NICU. Abigail was still very connected to all the wires at the time and it was a hard for us not to cry in those pictures.
Abigail and her parents in the NICU
We had a daytime nurse, Keileigh, and a nighttime nurse, Sterling, volunteer to become Abigail’s nurses. They were only in charge of Abigail while they were there and James and I became good friends with both of those ladies and still keep in touch with them.
Abigail started to improve. She slowly came off life support and though we were still warned to expect a lot of disability, we were so thrilled with her progress. We took Abigail home from the hospital two weeks after she was born and although she made so much progress from her birthday, she was classified as failure to thrive, so we had a visiting nurse come to our apartment in Hanover at least once a week. Abigail had visiting therapists as early as I can remember. Pushing her along her milestones and honestly as a brand new mom it was helpful to have a little guidance.
I became a very busy secretary after Abigail was born. She had a date book full of appointments going back to see all sorts of specialists at CHAD with multiple appointments every week. And I always felt like I was bringing a celebrity to the doctors. Everyone who had known her from the ICN would come by and check on her regardless of who we were scheduled to see. It was very clear that everyone was very invested in Abigail and her progress.
Not long after Abigail got her first hearing aid we moved to Florida. There, Abigail was put into speech therapy. Abigail soon after had a sedated Auditory Brainstem Reponse (ABR) test and ended up with two hearing aids this time. While in Florida we had a baby boy named Danny who is Abigail’s best friend, annoying little brother, and constant companion.
Abigail and her brother, Danny
We continued to see an audiologist in Florida until we were able to move back home to New Hampshire. Moving back home we were so excited to be able to bring Abigail back to CHaD so she could get to see all her healthcare providers that have taken such good care of her before we moved away.
Abigail is a very bright, imaginative and caring. She adores all of her doctors, and for quite some time really wanted to be a pediatric audiologist. Abigail loves reading comic book novels, singing pop songs and dancing. She loves telling jokes and learning about nature. Abigail has her struggles with fine and gross motor skills and comprehension and executive functioning but she is a champion and a fighter. And so kind. And I am so proud of her every day.
— Abigail’s mom, Georgia
Abigail with her family
The CHaD HERO 15-day event has begun! It’s not too late to register and create a team. You can virtually participate now until Sunday, October 18! Learn more and register at www.chadhero.org.
My name is Lily Webster and I’m 14 years old. My nana volunteered to take me to my pediatrician as my mom and dad were working. She had noticed that I was drinking a lot and using the bathroom more than normal. Blood work was done at my doctor’s office and I had a high AIC level. My doctor sent me to DHMC to see a pediatric diabetic doctor. I was diagnosed with Type 1 Diabetes after seeing Dr. Christiano. That’s the day my life changed forever. I learned how to give myself shots, count carbohydrates, look at nutrition labels, and found out I couldn’t eat my favorite foods anymore (mashed potatoes and Oreo’s).
I am now on an insulin pump. Having the insulin pump has helped as now I no longer need to give myself shots. I just figure out how many carbohydrates I am going to eat and the pump releases insulin to cover what I’m eating.
Lily holding a bouquet of flowers
I am proud to say that by using all the information I have learned over the past year, I have lost over 30 pounds and feel so much better than I did before I was diagnosed. – Lily, Kid HERO Crew member
When you register for this year’s CHaD HERO, you are supporting 95,000 CHaD kids like Lily. Sign up today at www.chadhero.org.
Ah, mindfulness – that concept we hear so much about, but what is it really? Or rather, how do we practice it? Most of us fall into one of two categories: (1) we feel it’s sort of a vague term and aren’t really sure ‘how’ to do it, or, (2) it feels so intimidating and all-encompassing that we don’t even know where to start. I’ve wavered between both of these over the years. Looking back, the times when my mindfulness practice has felt most useful is when I’ve broken it down into small practices. There are many ways to practice mindfulness, and it’s important to pick what works for you.
Heather is a Yoga Instructor at Mighty Yoga
The mindfulness practice that has helped me the most during the past six months has been increasing my awareness of three things: (1) the information that’s coming in, (2) the thoughts that are swirling around, and (3) the words that are coming out. It is so important to have an awareness of what we’re watching and listening to, to have a filter on the information that comes in. This is the fuel that feeds our thoughts and actions. When we eat healthy foods, our bodies feel better and we have more energy. When we don’t eat so well (like at my son’s birthday party this weekend), we don’t feel so well. There is so much going on in the world right now, huge amounts of change, of pain and suffering, and also great spots of light and love. If we let all of that in unfiltered, then we feel the effects of that – good or bad. Our minds, hearts, and bodies can be such a powerful force for good in this world, but if the majority of the information we are taking in is negative, then it takes a huge amount of strength to have more positive thoughts and actions. Like running a 5K after two pieces of cake – luckily, I don’t have experience with this one!
But how do you figure out what’s necessary and what’s not? For me, I find it most helpful to ask myself, “Is it useful?” The trick is to use this practice to become aware of what’s useful and what isn’t – and to know when I’ve crossed that line. This practice of “Is it useful,” can be applied in three dimensions – the information that we take in, the thoughts running around in our head, and the words that we say. We each have a finite amount of energy. None of us wants to waste that energy on things that aren’t serving us, but we often do (unfortunately, it’s really easy!).
Heather enjoying a yoga class
The thing I like best about the “Is it useful?” approach is that it isn’t about denial; it’s about choosing where we spend our energy. If you’re having trouble with something or someone at work, it can be extremely helpful to share this with a friend or mentor. However, if the sharing turns into a 3-hour venting session, well, maybe we’ve gone past the useful stage in the conversation.
One example that comes to mind is the COVID-19 pandemic and our family. So far, we’ve been fortunate that the effects we’ve felt from the pandemic have been limited. That doesn’t stop me from wondering what if…. What if someone in our family gets sick – one of our kids, my husband, or me? How long will we all have to stay home? Will we be able to work? Pause. Is it useful? The answer is yes, to a point. Yes, we can make plans for what we’ll do, what modifications to our schedule we’ll have to make if that does happen so we’ll be more prepared. However, when all of the ‘what if’ thoughts run around in my head, spinning me into overwhelm and paralysis for hours, that is not useful. The more we practice this awareness, the better we get a noticing when we’ve crossed the line.
If you aren’t used to paying attention to these things, it can seem overwhelming at first, and impossible to sustain. Remember, mindfulness is a practice – it’s like a muscle, the more you use it, the stronger it gets. I recommend starting with your awareness of the information that comes in. Once you start to have a handle on how shifting this can affect your mood, your day, your power, then shift to the thoughts that run around in your head, and finally to the words that you say. Be patient with yourself and what you find as you venture into this exploration. Taking notes or writing in a journal can also help reinforce what you learn. I encourage you to try this for 10 days, and take notes or write in a journal every day: what happened, what information came in, what swirled around, and what words came out. What was useful? What wasn’t? What shifts could you make?
I won’t lie – it’s not easy. However, each time I shift from a whirlwind of negativity and overwhelm into spaciousness and peace, it changes everything – my day, my relationships, my life.
Avery, Kid HERO Crew member, throwing out the first pitch at Fenway Park for Childhood Cancer Awareness Night in 2018.September is Childhood Cancer Awareness Month.
“With lab results like this, we are concerned that this is leukemia. You need to pack a bag quickly, and get Avery up to Dartmouth-Hitchcock tonight. The doctors there know you are coming. It’ll be late once you get there, so go in through the ER.”
This is what I was told on the phone three years ago. It was evening, and a pediatrician at our local office had stayed late to wait for results from a blood draw Avery had done earlier that day. She’d had very high fevers for over a week and had been complaining of a sore back. But, other than that, she’d been acting like her normal 3-year-old self.
An hour and a half later, Avery and I pulled in to the parking lot outside the ER. She held my hand as we walked in the doors. We were greeted by a woman working at the desk – she sweetly complimented Avery’s shoes, took our information, and handed Avery a huge stuffed teddy bear. In the very first moment we were at the hospital, Avery had a smile on her face.
Avery with her stuffed teddy bear
As counterintuitive as it may seem, Avery was smiling and giggling more often than not during the six days of our inpatient stay. During that time, she was poked and prodded innumerable times, had all kinds of procedures done, and was started on chemotherapy. But, there was so much more going on than all those tests and procedures. Avery had a never-ending supply of DVDs, puzzles, crafts, books, treasure-chest prizes, and a fantastic selection of toys to play with. The nurses and Child Life team took turns being ‘attacked’ by Avery’s stuffed crocodile, which made her laugh more than anything. The staff worked together as a well oiled machine providing distractions, but also allowing Avery to talk about what might be scary, or worrisome, all while she played with them.
Avery with her mom at CHaD
Before we were discharged to go home, the Child Life team made sure that we took a trip down to the Pediatric Hematology-Oncology clinic to see the playroom there. We talked to Avery about how she’d get to play in this awesome playroom each time we came to see the doctors. You’d think the LAST thing she’d want to hear about was having to see more doctors. I braced for the impact of a tantrum or tears… but instead, her eyes were wide and dazzled by the little play kitchen, the dollhouses, and craft supplies… she was totally on board.
Avery at CHaD with Child Life Specialist Jen
During the following months, we were at clinic a lot, as demanded by Avery’s 2.5 year treatment protocol. But, that wasn’t the hardest part – the hardest part was keeping Avery away from germs that her weakened immune system couldn’t fight off. Avery wasn’t able to return to her preschool – no playdates, birthday parties, or most other things your typical preschooler does. And, for an added layer of complexity, we happen to live at a boarding school… our house is actually attached to a dorm of 35 teenage boys. You wanna talk about germs?
So, we hunkered down and did our best keep her away from those harmful germs. As such a social kid, she was really missing being a part of it all. I had expected that the worst part would be taking her up to CHaD for all her appointments. But, instead I saw that our frequent visits to clinic quickly became the highlight of her week. The nursing staff and child life team became her best buddies. We’d be at home and she’d plan out which necklace to wear to clinic because she knew Jen would like it, or it was Kami’s favorite color… Going to the hospital became like going to a play date for Avery. All her favorite people, and all her favorite toys, all in one place! So what if she was also receiving chemo infusions while playing in the playroom? (Kids are amazing, aren’t they?)
Of course, toys and playrooms are one thing – they are truly wonderful distractions – but the relationships we’ve built are what make it all work. The nurses, doctors and child life team really know and understand Avery. They knew all her little quirks, and how to keep her calm. They knew she called her PICC line her ‘tubey’, that she hates the ‘window band-aids’ that cover her port, and that she can’t stand the smell of the antiseptic sponge. They know she’s feisty and she likes to be the one in control – easier said than done in this situation – but we found a routine that worked so well, and for that I am so grateful. They certainly didn’t have to do all these things, but that’s what makes CHaD special… Everyone goes above and beyond to help kids and their families. They far exceed expectations, in all that they do.
Avery getting her blood pressure taken at CHaD
That’s just a little bit about our story – but we are well aware of the fact that we are just ONE story, ONE patient, ONE family – and that there are so many others receiving the same amazing care at CHaD. Avery received her last chemo treatment one year ago and is doing great. While we are so thankful to have gotten through treatment and put that behind us – Avery’s cancer journey isn’t over. So often the focus on cancer kids is when they’ve lost their hair and are receiving their chemo. But, there is a lifetime of follow up involved for kids who have battled cancer. We will be visiting clinic for her follow up visits. She’s still be receiving physical therapy to strengthen muscles that were weakened as a side effect of all the chemo. And there are late effects that we may not even know about yet. So, just as we are so thankful for the care she received during her treatment, we are fortunate to be able to continue her care at CHaD going forward.
Avery hanging out at a lake
What makes the CHaD HERO an incredibly special event is that the money raised goes to help the littlest patients in so many little ways that all make a tremendously HUGE difference in their lives. – Caitlin and Chris, Avery’s parents
Avery and her mom at 2017 CHaD HERO (left); Avery and friends at 2019 CHaD HERO (right)
In June 2019, Tristan began limping and complaining of pain in his right knee, so his parents took him to the pediatrician. Tristan’s doctor decided to order an x-ray and it turned out that Tristan had what appeared to be a non-ossifying fibroma in his upper right femur, which turned out to be large and at risk for breaking the bone. Tristan’s pediatrician immediately made a referral to DHMC, and Tristan and his parents met with Dr. William McKinnon in Orthopaedics.
Dr. McKinnon immediately made Tristan’s parents feel at ease with his compassionate and caring manner, and it was very apparent he possessed an incredible knowledge of the condition Tristan was diagnosed with. Tristan quickly warmed to Dr. McKinnon, who spoke directly to Tristan and treated him with such respect and kindness. They formed a friendship over the next several meetings and learned they had a shared love for nature and science. Dr. McKinnon always had some sort of fact about nature or animals that he shared with Tristan. Knowing he would see Tristan again, Dr. McKinnon would give Tristan a fact to research, so they could talk about it the next time they met. Tristan even drew pictures for Dr. McKinnon, which he hung in his office.
Tristan at CHaD
Dr. McKinnon’s recommendation to Tristan’s parents was that Tristan have surgery to correct the problem. Surgery for any person can induce anxiety, but that anxiousness can be amplified when it is your child. Tristan’s parents had already talked about the idea of getting a second opinion if the recommendation were to be surgical intervention. Dr. McKinnon did a great job of anticipating this, and had already consulted with a colleague of his at Boston Children’s Hospital about Tristan’s case. Tristan’s parents felt Dr. McKinnon was truly valuing their son and were impressed he had the forethought to already consult with a colleague about this case. That consultation of Dr. McKinnon’s enabled Tristan’s parents to avoid undue delay in addressing their son’s health issue.
Tristan at CHaD
Tristan underwent surgery days later. It was a scary time for the whole family, and especially Tristan. However, the whole experience was made exponentially better by the care they received from DHMC, Dr. McKinnon, the entire surgical team, the nurses who cared for Tristan (Nurse Ross was Tristan’s favorite!), the occupational and physical therapists who worked with Tristan prior to discharge, and the entire CHaD crew.
Tristan enjoying some water activities
In the fall of 2019, Tristan and his mom visited David’s House and dropped off a donation of paper goods and baked goods. Tristan felt good being able to give back and help another family. Tristan has healed from his surgeries, and is a happy, healthy 7 year old! – Tristan’s mom, Emily
Join Tristan for his first year participating in the CHaD HERO! Register today at www.chadhero.org.
When our son, Finn was just a few months old, I was reading bedtime stories with our daughter (Finn’s big sister), Frankie. A thunder storm was booming outside. In many ways, the storm reflected our lives at the time – we were trying to wrap our heads around having two very young children, while also trying to understand the medical complications Finn faced associated with having Down syndrome; there was a steady storm of appointments, unknowns and learning that we were doing our best to manage.
As I closed the last book for the evening, a huge thunder clap boomed outside. Here is the exchange between Frankie (20 months) and I that followed:
Frankie: What’s that, Daddy (wide eyed)? Me: It’s just thunder, Love. It will stop soon. Frankie: I’m brave, Dad. Me: I know. Frankie: I’m not afraid of anything.
She then rolled over and promptly fell asleep with the storm crashing outside her bedroom window. Maeghan tells our kids the same thing every night before bed; you are brave, kind, smart and strong. My conversation with Frankie that night helped me understand that our kids are listening to and watching what we do, all the time. In that moment, I knew that we had to be brave examples for Finn if we ever expected him to show the courage necessary to overcome the challenges that would surely be placed before him. Ultimately, we want what every parent wants for their child; for Finn to be independent, happy and make a positive impact on the world around him.
When Mae was 10 weeks into her second pregnancy, we learned that our child would be born with Down syndrome. In that moment, we did not feel courageous at all. We were scared of the unknowns and mourned some perfect life that we had anticipated for our baby. We feared that our family, friends and community would not accept our son because of his disability and that we would be isolated as a family.
Finn and his older sister, Frankie
Turns out, we were afraid of all the wrong things. Finn is loved, welcomed and supported by his community. What we did not anticipate or adequately prepare for, were some of the medical complications connected to Down syndrome. While we were aware that in addition to intellectual and developmental disabilities, children with Down syndrome are at an increased risk for certain health issues, we also knew that every child is unique with their very own strengths and difficulties.
We quickly found out what this all meant for Finn. We have spent countless hours at CHaD for any number of conditions including Finn’s congenital heart defect, hypothyroidism, hypotonia, sleep apnea and digestive problems. This means visits with pediatric cardiology, endocrinology, and gastroenterology, to name a few. Our visits have ranged from a routine one-hour appointment to an extended stay, thanks to a lung infection when Finn was 18 months old. We know these visits will continue and Finn will have a lifelong relationship with ChaD – because of his heart defect, he will see a pediatric cardiologist for the rest of his life. While hospital visits can be challenging, we are grateful that CHaD is our hospital home base.
Before Finn, Maeghan and I had very few interactions with hospitals or the medical world outside of check-ups and garden-variety sickness. During Finn’s initial appointments, we were guarded and apprehensive; constantly bracing ourselves for bad news. But what we discovered quickly is the staff, volunteers, doctors and nurses at CHaD bring a secret ingredient to how they care for children – the ability to make families feel strong and courageous during very scary, vulnerable moments.
I have a tendency to ask LOTS of questions when I’m anxious or afraid; it usually buys me some time to work through a troubling thought. As someone who received a mediocre grade in high school anatomy and physiology, and has virtually no medical training, the answers we received were often confusing to me (Mae’s yoga background and training are a strength in this department). If we didn’t take notes, I rarely remembered what the doctors and nurses told us. But we always remembered exactly how we felt walking out of a visit to CHaD; listened to, respected and supported. We were also able to advocate for our son and felt that we were doing so in a safe place. The CHaD community always made us feel courageous in the most difficult moments.
Finn with his parents when he was our 2019 Kid HERO
Finn is now 4 years old, and is as brave, strong, kind and smart as they come. He shows us how to be courageous every day; building friendships at school, climbing to the top of any playground and engaging in therapy to develop his communication and motor skills. He is bringing us a life full of light and inspiration. We attribute his confidence and positive attitude at medical appointments to his experiences at CHaD. He arrives at every appointment with a smile on his face, pulls up his shirt for the doctors and nurses to listen to his heart and blows everyone kisses before we head home.
Finn and his dad this June
We still have our scares; Finn had heart surgery on June 25, 2020. Finn was freely giving out hugs and blowing kisses all the way into the operating room, inspiring us to find the courage to manage the weeks of his recovery. As parents, we may have to overcome challenges associated with Finn’s medical needs in the future. But we look to our son for inspiration and tap into our bravery bank because we are consistently surrounded by genuine kindness and caring that allows us to transcend the fears we may face in the future.
We know every child at CHaD has unique health challenges. We also know one thing is consistent; the staff, doctors and nurses make every child and every family feel courageous when they need it most. They understand when a family is struggling – maybe having a tough day because your child has been in the hospital for weeks and all you want for them is to be on the playground. At CHaD, they also understand that the cure for any illness lies not only in surgery and medications, but also in positive relationships and community support.
Finn and his family at the 2018 CHaD HERO
This is our fourth year running the CHaD HERO for our team, Finn 321. By participating in the CHaD HERO virtually with our family and friends, we honor the CHaD community. We will always remember how CHaD makes us feel in the face of medical challenges. Our hope is that every family’s visit to CHaD is like ours – filled with compassion, kindness and, of course, courage. — Luke, Finn’s dad
Sign up today to join Finn and his family in participating in this year’s virtual CHaD HERO at www.chadhero.org.