Everly’s Life Lessons

Happy 2025 to all my wonderful readers! I hope the idea of a new year for you brings hope, inspiration, and a renewed energy to make it into whatever you want it to be. Naturally it is closely connected to resolutions, ones that may or may not hold true for the next twelve months. I personally like to think of them instead as reminders of who I am and what I want to bring into this new season. In my living room, I have framed ten lessons that Everly has taught me through my journey with her. Although I wrote about these lessons seven years ago, they still hold true today and are what I plan to bring into 2025. I wanted to share this post on January 1st in the hopes that they may do something for you, as well. Before I share these lessons, a little backstory on this post. When Everly was two years old, I wrote my one and only Christmas letter. I sent it to as many people as I could think of that had supported us through this journey, thus far. I wanted to share it with them because those people had helped create these important lessons, the ones I continue to live by. So below is a reminder of that 2017 Christmas letter. I share it with all past, present, and future supporters of our journey. When you think about this year ahead, maybe you can also relate to these lessons I have learned. Feel free to download the image below and place it in your space as reminders for the new year. Cheers to happiness and to new beginnings! ~ Erin

Tis the season to be THANKFUL for all the blessings that encompass our lives! If someone would have told me two short years ago that spending 150+ days in a hospital with a daughter who is medically fragile would have broadened my ability to be THANKFUL, I would never have believed them. That in fact, is exactly what happened. This year, I decided to do something I’ve wanted to do for so long. I want to share our story with the people who have become part of it in an attempt to express our most sincere gratitude for the role you have played. Here is our story.

Around this time two years ago, our family experienced a lot of firsts. We were finally able to bring our three month old baby outside the hospital doors for the very first time. We were so THANKFUL! This was also the first time we would test Everly’s car seat as she had never been in one before. Luckily, it didn’t seem to bother her as we left Milwaukee, Wisconsin and made our 10 hour trip home. We were going home for the first time! We were instructed to leave the pumps attached to Everly alone unless they started beeping, at that time we would need to contact the hospital immediately. It is hard to explain how one can feel completely terrified and THANKFUL all at the same time. That was us on that ride home, terrified as we questioned if we were ready as parents to provide Everly all she needed, but also so THANKFUL to be going home, just in time for Christmas! 

There are many parts of our journey that seem like somewhat of a blur. However, one thing continues to be so very clear and that is the outpouring of love and support that we have and continue to receive. If you’ve made a phone call, sent a text or left a message, if you’ve stopped by for a visit or dropped off a meal, if you’ve shoveled our driveway or decorated our house for Christmas, if you’ve sent a card or a gift, made a donation or said a prayer, if you’ve knitted clothing, provided a photo shoot, performed a concert, or thrown a birthday celebration, if you’ve been part of a fundraiser, a benefit, a lemonade stand, if you’ve sold tea towels, baked goods, Dippin’ Dots, t-shirts or bracelets, if you’ve built a website or created a non profit organization, if you’ve devoted time to being Everly’s friend, family, PCA worker, medical professional, or supporter, you are part of our story. For all of this, we are THANKFUL for you! It has taken some time to process this amount of gratitude because it is so big and means so much! We continue to try and find the exact words to express our true appreciation, but have come to realize there are no words. We are often left speechless. You have reinforced the kindness that still exists in our world like no other we have seen before. We will Foreverly be THANKFUL for you!

I have made it a life’s mission to pay it forward in any way possible, just like you have done for us. One way I would like to pay it forward this holiday season is to share some life lessons Everly has taught me. You see, from the very first day Everly was born she began teaching the world important lessons. Although I certainly don’t have all the answers, I am so THANKFUL to her as these lessons have truly enriched my life. Here’s to hoping they add a little extra to your new year as well! Thank you for your part in our journey! Happy Holidays!

Ten Life Lessons from Everly:

1. May you live everyday to its fullest – When Everly was diagnosed with MMIHS at one month old, we were given an outdated article and grim prognosis. We had no idea how long we had with our baby so we did our best to live each moment to its fullest, even if it was within the walls of a NICU. Due to medical advancements and a greater awareness, the life expectancy is changing for the better. However, we still don’t know how long we have because no one is guaranteed tomorrow. Everly truly takes advantage of every single day which is a great lesson for all of us. Live each day to its fullest! 

2. Be Brave – Everly was wheeled in for her very first surgery at one day old. Little did we know this would be the first of many. Immediately following her most recent surgery, Everly briefly opened her eyes, lifted her arm and gave us a sweet little wave. It’s like she wanted us to know she was ok. On days when Everly’s intestines are not able to digest quickly enough, she will simply sit in our laps with a spit cloth, wipe her mouth afterwards and say, “little sick, feeling better now.” She has been through far too much in her little life! The thing about Everly is, no matter what life seems to throw her way, she continues to fight. She is sculpted to be her own hero and brave beyond measure. She has empowered others, including her parents, to try be that brave, too. 

3. Life isn’t fair but it’s still pretty great – The fact that Everly was born with a very rare and complex syndrome is just not fair. In situations such as this, you quickly realize that life is not always going to be fair. However, if we choose to dwell on this, we surely miss out on the parts of our lives that are still pretty great. Life is full of so much beauty and Everly is one of those beauties. She has MMIHS but this does not define her. She is a two year old who is so curious about the world. Yes, there are parts to her days that are just not fair, but so many other parts that are simply wonderful! 

4. Be Authentic – the saying, “You were born to stand out” certainly took on a life of its own the day Everly was born. One of the many things that makes our daughter unique is that she receives her calories through a supplemental nutrition called TPN. The fact that we follow behind her with one, sometimes two backpacks (attached to her central line) doesn’t seem to slow her down. Everly is herself and that makes her beautiful! What a lesson in letting go of who we thought we were supposed to be and embracing who we are.

5. It’s the little things that matter most in life – One of Everly’s favorite things to do in the summer is smell the flowers. Whether we are at the library, Target, a park, or somewhere else, she insists we stop to “smell the roses.” This has been such a lesson in calming down a life that can often seem very hectic and finding joy in the ordinary things. We love ordinary days! When Everly is feeling well, you will most likely find her out playing at the park, walking her babies in her toy stroller, at the local library, attending preschool (with mom in tow), or waving at the puppies from the pet store window. On days when her body is not feeling right, she likes to stay close to home and spend time in her playroom making snowmen and hearts out of play dough, reading books, and blowing bubbles. It truly is the accumulation of these little things, with our little one, that count.

6. Kindness Matters – “Be kind to one another,” (Ellen DeGeneres). It really is that simple and you, the people of Team Everly, have modeled perfectly what it means to be kind. Whether you are part of Everly’s medical community providing her care, a stranger who simply just wants to help, or a close family or friend who has made a difference, the kindness you have displayed is something to be admired. You are a true soldier helping to fight Everly’s battle and in the words of Everly herself, “That’s really nice!” We look forward to sharing with her one day the specifics about all the kindness that has always surrounded her! 

7. Perspective is a beautiful thing – Due to Everly’s syndrome, she is unable to digest food. It is also not feasible for Everly’s chest area to get wet, so bathing looks quite different. Hearing these realities for the first time was heartbreaking. How was our daughter ever supposed to enjoy water like other toddlers or feel included during meals? Everly reinforces daily that true happiness lies in perspective. She will outlast anyone at the supper table as she enjoys licking her popsicles, lemons, limes, and pickles in order to get a small amount of taste. Our nightly routine also includes Everly standing on her little pink chair playing in the sink. Everly has challenged us to change the way we look at these things and because of that, the things we look at have changed. She is happy during these times, and because of that, so are we! 

8. Count your blessings – The secret to happiness is taking time to count your blessings. We are blessed for so many reasons. Everly is our greatest blessing! Some of our other blessings are ones we didn’t know existed before she was born. Because Everly is not able to eat, she relies on a supplemental nutrition called TPN (total parenteral nutrition). This is delivered directly into her bloodstream through her central line catheter that is placed in her chest and runs directly to her heart. Previous to the 1960’s there was no method for alternative nutrition such as this. TPN is saving her life. The continued medical advancements, like TPN, are certainly blessings we take time to count each day! 

9. Add value to people’s lives – When Everly was first born there was little research available on MMIHS due to its rarity. We slowly learned of a couple others in the world like her. At that time, one individual, my wonderful sister Mollie, made it her mission to do something in a huge way! In an effort to better the lives of people living with this syndrome, she created the first ever MMIHS website (MMIHS.org). This site would soon house the most recent information, along with stories of MMIHS families. Mollie also founded the first MMIHS non-profit organization (The MMIHS Foundation Inc.). Together, these accomplishments have not only added great value to Everly’s life (and ours), but many others like her. Alongside Evie, she is one of the most courageous individuals I have ever met. We are so grateful!

10. Surround yourself with good people – Family is one of life’s greatest gifts. Everly has helped redefine the true meaning of what “family” is all about. We continue to be so blessed with good people in our lives who have provided unconditional support and love. To the “family” of Team Everly, thank you for simply being there to not only celebrate the good times with us, but also help us through the trials. It is people like yourselves that have made this journey a bit easier. We are THANKFUL for you!