Little Clara's Miracle

When Rebecca first reached out to me back in May with her little girl Clara's heartbreaking story, asking if EleStory would consider sending her some dresses, the answer was a very simple "Yes." 

Little Clara is around my baby Caris' age, so reading about Clara's condition and the multiple painful procedures and surgeries her body endured broke my momma heart. I couldn't imagine what this brave little girl and the ordeal her parents must have gone through to help their little girl get better. Clara's story inspired me so much and I'm so grateful to be able to help tell her story. 

This is an excerpt of the email I received from Rebecca which describes Clara's condition and treatment well. 

Trigger warning: Within this first paragraph are a few images of Clara during her procedures that can be graphic and triggering.
Clara was born with something called Giant Congenital Nevus. A Nevus is a type of birthmark that poses a variety of threats, a very high chance of developing cancer, perhaps spina bífida later in life and other related complications. 
What makes the condition most severe is its location and size. Clara finds herself in the worst position for both of these categories. Hers is the classification of "Giant" (the largest) and she was born with the Nevus on her back which means it is over her spine and major organs. Because of this, after various consultations with surgeons and dermatologists, the unanimous recommendation was to start an aggressive approach to removing the Nevus. Because of its size, this needed to be done in stages through a process of skin expansion which involves placing implants under the skin for a period of 6 weeks to 3 months and injecting them daily with a saline solution to force the skin to grow the same way it would gradually during pregnancy.
 At the end of this period, the expanders are removed and that stretched skin is used to cover the areas where the Nevus would be cut out. As you can imagine, this is a gruesome process prone to many complications which is exactly what proved to be true in Clara’s case. She had many life threatening infections as a result of this process.
The good news is that now, after two rounds of skin expansion surgery and many surgeries in between, the Nevus has been removed...when I received the news, it felt like an absolute miracle. [Clara's] such a strong and beautiful girl despite the many scars on her back. She absolutely LOVES dresses and refuses to wear anything that isn’t a dress.

Below, we asked Rebecca to help us understand a little more of her family's and Clara's journey through this condition and recovery from Giant Congenital Melanocytic Nevus.
What have you learned about yourself and Clara through this journey?
People always remark at how resilient children are, but the reality is, they really are! Whether it's because they have no choice in the matter or because they have more faith, they are better at enduring hard things and maintaining a sense of joy and peace. For me, the greatest lesson was and continues to be about releasing control. In order to smooth as much of this over for her and be the best advocate I could be, I felt a need to be prepared and control and prepare for as many situations as possible. Because the entire process was unpredictable and did not go according to plan at every turn, I kept feeling discouraged that all my planning was futile. Clara on the other hand, did not know circumstances had changed from the carefully thought out plans and just continued riding the wave of life. It reminds me of a simple yet powerful verse that reads: “Forgetting what is behind and straining toward what is ahead…” (Philippians 3:13)

Clara has a beautiful way of forgetting all the pain she has endured and finding much joy in her present circumstances. Whether that is getting to enjoy an ice cream, or going to hula class, or seeing her little friends. I have learned to adopt that same childlike joy in order to move through times in life which are more challenging. 

What have you learned about motherhood?

I knew motherhood was hard. I had divided my pregnancy with the 3 trimesters each dedicated to the learning and research of different aspects of motherhood. I spent the first trimester educating myself on pregnancy, the second on the birth process, and the third on caring for newborns. However, all of this research did not prepare me for the rare condition Clara was born with. Further, I could not have anticipated the many complications that come along with health concerns. Clara’s eating habits changed drastically after having had many rounds of antibiotics. I had to get creative to avoid her vomiting and have her still get the nutrition she needed. There were many things about being her mother that fell outside the realm of normalcy and I often felt isolated as if no one was going through the same set of special circumstances we were enduring. In summary, motherhood has proved to be even harder than I thought! And all the prep in the world is not enough and does not necessarily bring the most important part: joy. So, instead, I must focus on the joyful moments and accept that life will always have its ups and downs and teach my children to overcome challenges while still finding joy.

Why have you chosen to shine a spotlight on Clara and her condition?

For a long time, I was extremely private about what we were going through as a family. I did not want to share pictures as to what Clara’s back looked like for fear that the images were too graphic for others. I also know the internet can be a wildly unkind place and I did not want our vulnerable hearts subject to judgment or ridicule. However, it was my friend Mariely who encouraged me to see things differently. The benefit of sharing her story was finding a community that knew how to support us because they actually knew the truth about what was going on. It also meant honoring Clara and her strength and teaching her to be proud of her back and identify as being strong and brave warrior which became her motto during the wecareforclara movement. Lastly, it meant I could share with other parents going through the same thing. One of the first things I did when Clara was diagnosed was try to find others who had gone through the same thing. In all honesty, it was very hard! It felt like we were trailblazing and did not have an example to go off of. I wanted to be able to begin to share all I had learned in the process with Clara and it is why I am in the process of writing a detailed book on the subject. The book has more details as to what occurred during the last 3 years along with information for how to manage the US healthcare system and how to be your child’s best advocate. 

What do you hope people would learn from Clara’s story?For those parents who have children with the same condition, I hope they learn valuable resources that will save them time and effort. I hope it will mentally prepare them for what they may be going through and realize there are other people who have gone through it! For those who have no direct connection with someone with GCMN, I hope they can be inspired by Clara’s strength and realize their children are just as strong and can endure hardship with the love and kindness of their parents and community. 

What is Clara like, and what is the best part about being Clara’s mom?

She is the most fearless little girl. She jumps on the back of a horse as if it is no big deal. She jumps into a pool with joy without knowing how to swim. She loves roller coasters. She absolutely loves to sing and dance and sings in public often and refuses to wear clothing that aren’t dresses. She greets everyone. She is empathetic and concerned with the feelings of and pain of others. She adores animals and babies. 

She really is incredibly inspiring. She has so much love for life and absolutely NO fear (Which sometimes is problematic!) She is confident in who she is and knows she is strong and capable. That attitude will carry her through life as she overcomes challenges with that belief system about herself. She sets a great example for her brother for how to quickly forgive and forget and move forward enjoying life.

 

How has Clara dealt with the challenges of her condition?


With all the grace imaginable. There have been many times she has adamantly not wanted to do something that she's had to endure medically. Almost every day of the second round of tissue expanders and the endless doctor visits, taking of medication, and countless IVs. Despite being clear that she does not want to go through that, she has treated others with kindness and drawn whatever support and love from parents and doctors that she could.

She has never held it against us or been bitter or unkind because of it. She has moved on. She has been honest about her feelings and shares them bravely. 


 What are your hopes and dreams for Clara?


That her motto of being strong and courageous never fades. It can be easy to see yourself as a victim and use your past struggles as an excuse for your current shortcomings. However, I want her to do the exact opposite. To remember that what she overcame with grace and strength can provide her with the courage she needs to carry forth in the future.That she may grow up knowing she was able to overcome as much as she did thanks to the kindness and generosity of others. With that knowledge, that she may always choose to be generous and kind to others whenever possible. Further, that her scars may continue to serve as an example of the need to be compassionate to others for the scars that are seen and unseen. 

What made you want to partner with EleStory? 

I was looking up mommy and daughter dresses and various companies came up on my search, but EleStory stood out to me. There was something so authentic about each post and I loved that it was a mom, like me, who was hard at work with the company. The styles of the dresses are so unique and beautiful and match in a way that makes perfect sense without being identical but true to each age group. I was not surprised that I got such a kind and positive response to my inquiry. When I learned more about the company name and how it came to be, I knew EleStory was a perfect fit for Clara. She absolutely loves dresses and she felt like a beautiful princess wearing EleStory! 

*  *  *  * 

Thank you, Rebecca and Clara, for taking the time to share with us your journey to recovery with Giant Congenital Melanocytic Nevus. As I worked on this blog post and read through your thoughtful words and combed through these beautiful images, I found myself fighting back tears time and time again. Her recovery is truly a miracle. 
I am so inspired by the way that Clara faced adversity with so much grace, strength, and courage, and embraces her scars. Clara, you are such a special little girl and are beautiful just the way you are.

xoxo,
Judy


Special credits:
photographer @davidossaweddings 
dresses @elestory
shawls @loullymakes
headband @agoldbead
location @lagranjaescuela

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