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Jessica’s Story: Finding Calm in the Chaos

April 30th, 2022  | HIElights of Hope

For most of her life, Jessica never envisioned having children, certain that motherhood was not her path. However, around eight years ago, she and her husband began to rethink their future, eventually coming to the consensus that they wanted to be parents.

With the birth of her daughter Sierra on July 20, 2014, and their HIE event, Jessica is grateful that she was so thoughtful and conscious about the decision to become pregnant. Had she still been unsure about motherhood, thrown into it the way she was, she can’t imagine how overwhelmed she would be.

Sierra’s hypoxic ischemic injury came from a few different components. No one realized it at the time, but, during her pregnancy, Jessica had an underdeveloped placenta. By the time the third trimester rolled around, Sierra was no longer getting an adequate supply of oxygen and nutrients. Jessica delivered very rapidly, en route to the hospital, and when Sierra was born, on exactly her due date, she was totally unresponsive. They rushed to the hospital, and, upon arrival, Sierra was immediately taken to the NICU and cooled for the seventy-two hour period.

The three-week NICU stay was terrifying, and while Jessica felt grateful to have access to all the medical services Sierra needed, and good health insurance coverage, she also felt very much in the dark. It was difficult seeing her little girl intubated for two weeks after cooling. On top of that, Jessica couldn’t help but internalize all that had happened as her fault.

In the NICU, Jessica didn’t get the concrete answers about the future she had hoped for, and realized that her life would become a waiting game of sorts. However, even though Jessica had to accept that she couldn’t control what Sierra’s future would look like, she could still advocate to ensure Sierra lived her best life possible. She did this by asking any and all questions of medical providers, searching online to find the best therapists and treatments, and, perhaps most importantly, realizing that she held the power to curate Sierra’s care team.

It wasn’t until Sierra was five months old that Jessica first came across Hope for HIE. Through Hope for HIE, she was able to make more informed decisions about therapies and find a community of people who just understood what she was going through. Most importantly, the fellow HIE parents she connected with reminded her that she held the power to decide who was involved in Sierra’s care—she had the power to be Sierra’s mom in the way Sierra needed her to be.

The biggest milestone in their journey was when Sierra got off her feeding tube at three years old. Now, at seven, Sierra is living a full life. She has a social and vibrant personality, and, although she is an only child, she desperately wishes that she wasn’t. In the meantime, she has her imaginary friends to keep her company. Her favorite musician is Prince, and she loves singing and dancing along to his songs, performing theatrical masterpieces for her parents.

In addition, Sierra enjoys exploring the outdoors. After Sierra phased out of physical therapy, Jessica enrolled her in a Waldorf school, an institution that focuses on letting the creativity, imagination, and individuality of students drive the holistic learning process. The Waldorf school has been an amazing experience for Sierra, as she is able to spend time with her peers every day, going on hikes and engaging in outdoor play. Sierra may be the last one in line on every single hike, but that doesn’t matter—what matters is that she has fun and does her personal best.

Because, on the surface, Sierra looks like any other kid, others often fail to recognize that it took years of hard work in therapy and retraining her neural pathways to get Sierra to where she is today. In the past, Jessica saw looks of confusion on the faces of teachers when she tried to explain Sierra’s journey with HIE and was often told by them that Sierra was “behind” in certain things. In reality, however, Sierra is not behind, but way ahead of where any medical provider ever thought she would be. Jessica hopes that, in the future, more teachers will take into account the full story of a child and home in on a child’s individual trajectory before writing them off.

Throughout this entire journey, Jessica has learned much from Sierra. Sierra has taught Jessica to not drown in the moment and to keep swimming despite the chaos. Jessica has learned that, even if their story doesn’t have the ending they thought it would, everything will be okay, as long as they keep moving forward. When Sierra goes on hikes with her classmates, she doesn’t think about how long she has yet to travel, but takes things one step at a time. Jessica is inspired by Sierra, and, in her parenting approach, she, too, tries to stay grounded in the present. As a mother, she is proud of knowing when to take a step in and intervene, while also allowing Sierra the space to grow as an individual.

Jessica is also proud of her efforts to share her experiences with others, in order to spread awareness. In the days, weeks, and months immediately following Sierra’s birth, when Jessica tried to open up to others about what had happened, she felt shame and guilt, partially because of the way Sierra was born. However, after years of therapy and working through the trauma, Jessica is now proud to be able to share her story in a way that is healing and empowering to her.

Jessica hopes that other HIE parents out there can find joy in the now also—savoring every spontaneous Prince song performance, exploring the wonders of nature on a hike, and not letting the “what-ifs” of the past and the future stop them from appreciating their child for where they are today.

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A User’s Manual for Trauma

By Jessica Esperanza

Step One

Your brain will do everything it can to protect you, Trust it.

You may go numb, feeling or hearing little,

A complete disconnect from your own body.

The numbness will fade slowly… Hours… Days… Months… Years…

Your brain is helping you acclimate to this new reality.

Trust it.

Step Two

As the numbness fades a loop will begin, as you mine the trauma moment by moment for all of the things that you could have done differently.

All of the things you would change, all of the ways that you failed.

You will try out many different versions, finding the weak spots in each reenactment

Starting again, making alterations.

You will recreate these moments over and over until you get it right.

Step Three

Your first instance of seeing your spouse you may think that everything has ended,

There is no way for the marriage to continue.

You may be right, though you may not know for years.

In the beginning you may cling to each other, holding on tightly in awe of the strength of your bond.  When some healing has begun you may think it time to turn on them.

You may break down your marriage to bare bones and stare at this stranger amongst the rubble, wondering where they came from and how you can escape.

This too will fade.

Trust it. 

Step Four

The flashbacks come and go, sometimes with reason, sometimes just to see if you are breathing. You may never be able to have quiet in the car ever again, there can be no space for thoughts to creep in. The shower is also a danger zone. 

Your once hopeful mind will now envision catastrophes occuring at every turn of your life.

You now know that hell can take over at any minute.

Step Five

You may not accept your own ineffectiveness.

The reality that sometimes shit just happens, and you have no say.

Instead you may try to own full blame for your trauma, 

naively thinking this is your protection against further damage.

You may think that now you have learned, that now, as long as you control every little bit of the world surrounding you, that you can stop anything else from happening to you. To her.

This cannot last.

Trust it.

Step Six

Letting go happens in pieces, though some part of you will always hold on, 

the damage a reminder that this happened and you can never go all the way back.

Step Seven

You may find others, and in your reassurance of them, you may find that you are also reassuring yourself. In forgiving them you may start to forgive yourself.

In this trauma you may just find your tribe, and you can love them fiercely.

Trust it.

Step Eight

Eventually you may wake up to be shocked to find you are still breathing, you are still here.

Altered but whole

All of the goodness you have been pouring into your child will start to overflow and you will have no choice but to absorb it.

You may find that the stranger that is your spouse will start to look familiar.

Something will reach you eventually.

Trust it.

Step Nine

Nature has been looking for you and she will find you. When you are ready, you will look around yourself, get back up and carry on. You will find all of the cracks and you will rebuild. Your trauma will stop owning you, but it has forever altered you.

We do not go through this life unscathed.

Step Ten

You can now look upon others with a deeper level of human kindness.

Err on the side of caution, you have no idea the demons another is fighting.

Be an ally, cast no judgement, be the strength for every one of us who has been broken down to nothing.

It will heal you.

Trust it.