Below are some of the most common questions I have been asked regarding our journey with Everly. I hope they are able to help you in some way! If there are other questions you would like answered by me, please feel free to email at [email protected].
What is one thing you wish you knew back when this journey all started?
That it will not be like this forever. The first year of our life as new parents was a whirlwind, completely unpredictable and scary. We were in an out of the hospital constantly… regulars at the ER, too familiar with the back of an ambulance, and even passengers on private medical flights. There was no way around it, the first year was down right difficult. Not only was I trying to figure out how to be a first time mom, but I was trying each day to keep my medical fragile daughter alive. My personal and professional life was basically shut down and I was simply trying to survive. I remember wondering how in the world I was going to keep this up? However, with time, things in fact started to settle. Eight years later, our “typical” day is no where near typical, but we have somewhat settled into our routine. There are still unpredictables in our world and pieces to each day that are hard and not fair. However, we have also become more aware of how to navigate this world properly. We continue to add so many more “tools” to our toolbox. Whether it be coping strategies, support systems, resources, etc.., our “tools” have helped immensely to make these years look quite different than that first one. If someone could have told me in that first year that it wouldn’t be like this forever, it would have certainly provided me some comfort .
What is one piece of advice you have for new families going through a challenge like this?
To break life down into doable pieces. With a syndrome like Everly’s, the big picture can often seem too overwhelming. I have learned the importance of taking life in steps, whether it be one day a time or even moments at a time. By simply focusing on only that period of time, whatever it may be, life seems much more manageable with a lot less stress attached to it. One example that may seem small, but has made such a difference in my mental well being is when I complete Everly’s medical cares daily. Sometimes we have ten or more different medical cares to complete in one session, with tons of medical supplies attached to each care. I have learned that it is necessary for me to clean up all of the things from one medical care, before I start the next. Otherwise, seeing all those medical supplies laying out can feel very overwhelming. It’s much more manageable to complete one care, clean it all up, and then move on to the next. Another example would be when we complete Everly’s multi organ transplant evaluations every other year. There are so many appointments and each one is very heavy. Challenging myself to compartmentalize each appointment as its own task, without thinking beyond that, helps to make the entire day/week more manageable. I find myself practicing this lesson daily, breaking life down into doable pieces. I have learned that it also helps me to be much more present in life!
How do you not live in fear all the time?
Fear has been my biggest obstacle to manage. With all that our first year entailed, I found it very challenging to not let fear take over my days. I wanted so badly to enjoy any moment outside of our medical world that I could with our new baby, but found myself constantly consumed in the “what ifs.” My mom highly encouraged me to seek therapy and I listened. The next year, I took part in EMDR therapy, an extensively researched method proven to help people recover from trauma and other distressing life experiences (EMDR International Association). Each week for one year, I would take part in this type of therapy, leaving each session completely exhausted from bringing all that trauma to the surface. Little by little though, I found myself worrying less about the “what ifs” and being able to live more in the moment. Life was becoming more enjoyable again! Do I still have fear in this world of ours? Of course! But it no longer consumes my days. EMDR, combined with other tools such as regular therapy sessions and nightly meditation rituals has allowed me to become more aware of my emotions, being able to manage them and live life much more presently!
What do you do on the really hard days?
I have learned that breaks are crucial for my mental well being. It’s not always easy to do, however. In times when events can be hard and overwhelming, I find myself feeling like it would be easier to sit in it. That, combined with the mom guilt of leaving for a moment can cause a situation where I am simply in it too long, which is never good for anyone. It has taken me time to come to a place of awareness of my needs in each piece of our journey. In order to take care of my daughter, I need to take care of myself. By taking a breather, I am able to come back with a new perspective, energy, and sense of fight for the situation. I am better for everyone when I take breaks. Sometimes that means taking a couple minutes, other times it means an entire weekend. Sometimes my breaks include other people, other times I choose to be by myself. It all depends on the situation, how I am feeling, and what time is available. I just know that no matter what, listening to my mind and body for what is needed in that period of time has made a huge difference for me and what I am able to bring to the table.
What is something you have learned through this journey?
I truly feel that when individuals are faced with traumatic events, there is no way it doesn’t change them in some way. There is a quote I read once that stated, “You may not recognize me, I put my pieces back differently.” Although our journey has not always been easy, Everly has gifted me with a brand new perspective on life, one that I would not trade for the world. She has taught me to slow down and be present in order to take in all that this beautiful world has to offer. Everly has opened my eyes to a larger universe than I knew existed, provided me with deeper perspectives, and motivated me to live my very most favorite life. In a world where I’m supposed to be her teacher, it is Everly who continues to guide and teach me. I will forever be indebted to my daughter for this life she has given me.
How do you advocate for your child?
The saying that a mom (or any caregiver) must wear many different hats has taken on a life of its own with Everly. One of my most important hats I proudly wear as Everly’s mom is her advocate. My biggest goal in life is to do everything in my power to provide Everly the quality life that she so deserves and with this comes advocating for her day in and day out. I have learned through experience that when you have a medically fragile child, it is not a question of will you need to advocate for them that day, but in which arena will you be advocating on that day?
The arena could be the medical field for which I have spent time advocating for Everly to receive care from a pediatric team that we believe can best care for her various needs.
The arena could be the community in which you live, where I have advocated to ensure Everly is able to safely take part in activities offered to children her age such as music and library class, gymnastics, dance and tennis lessons.
It could be the financial arena which in my world includes advocating for support systems to help ease the financial burden that comes with having a medically fragile child.
The arena for the day could include therapy for which I have spent time advocating to have my daughter seen earlier than recommended in the hopes of addressing the traumas and differences that have already affected her social, emotional, and physical well-being.
The arena could be the school system for which I have helped advocate for Everly to qualify for an Individualized Education Plan so she can safely attend school with others her age.
I have also spent time in the insurance arena advocating for more medically fragile waivers in our state so we wouldn’t lose our secondary insurance for Everly.
I have spent time at medical conferences across the country trying to raise awareness for her syndrome in the hopes that someday there will be a cure.
I have been known to cut apart dance costumes so they can comfortably fit Everly, kindly question medical professionals if something doesn’t feel right, scope out environments she will be apart of ahead of time, attend birthday parties in the water so she could be included in the water, etc… Some call it helicopter mom, I choose to call it advocate:)
I go into each day with the mindset that part of my job will be advocating for Everly in some arena in order to provide her the life that she so deserves. It is just a matter of figuring out which arena I will be in that day and what I need to do in order to properly advocate for her. No matter what arena I find myself in for the day, advocating for my daughter will always be a mission of mine and one that will never be taken lightly.
How do you deal with your child feeling “different?”
For our family in this situation, I have found a couple things to be extremely helpful:
1. To make sure and allow them time to feel these types of emotions and know that it is ok. I find myself saying often in these situations, “It is ok to feel sad, frustrated, ect..” Life is not fair and I wish it was.” I have even cried with Everly at times so she can see that it’s ok to feel.
2. After allowing them time to recognize and sit with these feelings, supporting them in strategies that will reset their emotions. I try and honor time to feel those hard emotions, but certainly don’t want Everly to sit in it too long. Play therapy has been such a positive addition to our collection of therapies. There, we work on different strategies to help Everly reset her emotions so she can enjoy the rest of her day.
3. We really try and support Everly in educating her surroundings about the parts of her syndrome that she is comfortable sharing, specifically why she is wearing a backpack and not eating as much as everyone else. We have found that when others are educated on these types of things, they often move on and and make Everly feel more comfortable with her differences. They don’t ask as many questions and can’t make anything up because they know exactly what is going on. We also role play situations and allow Everly practice at home to respond, so she is not caught off guard in the actual situation.
4. We also try hard to introduce Everly to populations of differences, so she is aware that although there is no one else in our town (or state for that matter) with her syndrome, there are others that also have differences. We do this through in person gatherings, books, shows, conversations, etc.. I try and find the healthy balance between letting her be involved in everyday activities where she is able to for the most part “fit in” but also allow her those opportunities to see and remember that many people have differences.