The Story So Far (Post 1)

I recently read a book stating that “some events are so momentous that they erect a divide in the timeline of our lives. There is a glimpse of time that ends life as we know it and begins a whole new one. It’s called the before and after moment.” (The Gift of the Unexpected, p.11). My before and after moment happened on September 22, 2015. Life as I knew it had changed forever.

I’m sure other moms can agree that the birth of your first baby naturally changes your life in a multitude of ways. With that comes an array of emotions ranging from elated to completely terrified. That was me on the day that Everly Anne Peterson graced us with her presence. After 14 hours of labor, she was born and we were in love. We were in love with her and with the start of our new life as a family of three. I’m a planner and this had always been in the plans. I have come to realize however, one raw fact of life is that not everything goes as planned and sometimes there is no way to prepare for the twist.

I reference September 22nd as my before and after, not only because of my new magical role of mom, but because of what would take place in the 12 hours after Everly was born. Little did I know, my world was about to be rocked to its absolute core. The kind of rocked that challenges everything you ever knew about living. The kind that breaks you. My baby’s body wasn’t working and no one knew why or how to fix her. Reflecting back, I am so grateful for those first 12 hours as a family. Although we were exhausted, those were our only hours of experiencing the typical journey into parenthood. Our story beyond that has been far from typical. In fact, there are still many parts to our everyday lives that are unimaginable to most.

You see, our sweet Everly was eventually diagnosed with a very rare and life threatening syndrome called Megacystis Microcolon Intestinal Hypoperistalsis Syndrome, MMIHS for short. There is no present cure for this syndrome and when she was diagnosed, we knew of no others like her in the world. At that time, we were told we had one year with our baby due to this complicated syndrome she was born with. MMIHS affects the motility of the bladder and gastrointestinal system. There are many ways this impacts the well-being of an MMIHS patient. Most of our bodily functions that one might take for granted, Everly needs medical intervention to complete. For example, she does not eat by mouth. Her body could not tolerate it. Instead, she receives supplemental nutrition called TPN (total parenteral nutrition), which is delivered directly into her bloodstream through a central line catheter in her chest for 16 hours per day. Simply put, Everly is hooked up to a pump to keep her alive. This is placed in a backpack for a good portion of each day. Her little torso also houses a g-tube for medication administration and an ostomy to help prevent abdominal extension. Everly can not get wet without extreme precautions to protect her central line. She requires around the clock care and monitoring with an extensive set of medical cares taking place every 4-6 hours, 24 hours straight. She spent the first four months of her life in the NICU and has been in and out ever since. She has had a total of seven surgeries, with thousands of medical interventions, tests, and appointments having taken place already in her life. When Everly was first diagnosed with MMIHS, we were given the one outdated article published on MMIHS and a grim prognosis. We were told the rarity of her syndrome was 1 in 240,000,000 and that we had a better chance of winning the lottery. The ironic thing is though, we did in fact win the lottery with this wonderful soul who has taught us so much about life. Everly is a warrior, one of a kind. She continues to fight each and every day to live a life of happiness despite what she deals with day in and day out.

The reality of these circumstances has taken me through a whirlwind of emotions spanning through all the stages of grief, to complete numbness and shock, to genuine happiness and contentment, and back through all of them over and over again. Prior to this event, I had lived my life for the most part in complete control, always playing it safe. This way of living was predictable, nothing out of the ordinary or unexpected. I had never been tested in this way and I had no idea how to prepare for this new world I would now be living in. It was unrecognizable and it was terrifying. To be completely honest, it can still be terrifying at times. 

However, now seven years into this journey, I have come to respect this before and after for what it is, an opportunity for growth. It has taken me some time to get to this point and it will forever be a work in progress, I am sure of. But I find myself no longer needing to stay busy to prevent unwanted thoughts and fears from creeping in. I don’t feel the need to push hard feelings deep down inside anymore, making them impossible to resurface. Seven years in, I am now able to spend time in the hurt and in the messy parts of life. In fact, I have learned that this is a necessary step to growing and to living. There are wonderful lessons to be learned in these unrecognizable parts of life and I am continuing to take them all in!

I never once questioned the fact that my child was going to change my world, but I had no idea to what extent. Everly has given me the ultimate gift and that is a life that I could have never imagined possible, one that I didn’t even know existed. She has allowed me to rediscover myself; who I want to be and what I want to contribute to this world. I will forever be indebted to my child for the life she has provided me. Time is what I have needed to get to this point though; time to heal, time to reflect, and time to process it all. This time has been a necessary step in order to begin putting my pieces back together. However, I have learned that when you experience a before and after moment like I have, oftentimes the pieces are not put back the same way. With the lessons learned and perspectives gained, I have done my best to be cognizant about what pieces I put back and where I place them. With that said, I am ready to share my story. It is raw and vulnerable and nowhere near perfect, but that is the beauty of it. This story is filled with trials and triumphs, happiness and tears, loneliness and belonging, heroes and warriors, lessons and perspectives, and at the center of it all, a child who I believe was placed on this earth to make a magical difference.

I am so grateful for the journey and what I have learned through it all. However, I know that there are so many parts that I have yet to discover. When hit with trauma, there is no way to experience it all at the moment it is happening. Fight or flight mode kicks in and you are simply trying to survive. So part of this healing process for me is going back to the very beginning in order to move forward and continue to grow the life I want to live. I plan to spend time in it all and want to share this journey with you, the reader. My hope in sharing this is that it will help others. Although our journeys are probably quite different, whether you have experienced a before and after moment or not, there is comfort in finding parallels with other’s lives and knowing you are not alone. I encourage you to join me in this opportunity for growth and as you read, think about what this may mean for your life moving forward. If anything, it’s an opportunity to read a story about a sweet little girl who continues to teach the world such valuable lessons, and with a mom cheering her on every step of the way!

“I wish I would have known sooner that this before and after moment was instead an invitation to a new life… by going back, by owning our whole story, we can eventually move forward as the wholehearted people we want to be” (The Gift of the Unexpected, p.29, 41).

So here we go… back to the beginning, before my life broke wide open.