Worry Will Change Nothing

I have had the pleasure to meet Miranda (27 years old) through a military wives group that I started on Facebook soon after a move to my area. I began to get to know her through daily sharing and comments through Facebook.   I was most struck with what she shared about her beautiful family. I began to realize the great big love that she has for her children (Noah and Scarlett) and the challenges she has had to endure with raising a child born with a severe heart condition.   Through this, she has developed both courage and strength. I was interested to learn about how this young mom got through this and what she could share with others.

I want to introduce you to little Scarlett, Miranda’s beautiful 2 year old daughter.   Scarlett has short blonde hair and the most delightful big brown/hazel eyes. I smile when I think of her and how fun it is to simply sit and watch her enjoy the little things (e.g., eating her French fries, walking, playing with her mom, etc.). Scarlett has almost a shy demeanor when you first meet her. And as I got to know her, I was awestruck by the strength balanced with gentleness apparent in this little soul.

Soon after Miranda learned of her pregnancy, it was discovered that Scarlett had heart issues. The military and the medical profession scrambled to move Miranda back to the U.S. from Ramstein AFB in Germany to make sure that she was near the best cardiology care possible. Miranda describes this time as stressful with both the medical challenges and the fears with having to leave her 4 year old son Noah and her husband, Justin, in a foreign country, set up home in the DC area by herself and then waiting to give birth. Her family would soon follow as her husband did receive Humanitarian orders to come back to the U.S. Scarlett was born on time at 5 ½ pounds. This was both a beautiful day and the start of a very difficult journey for her and her family and their fight for her survival.

When Scarlett was 4 days old, she had her first Heart Catherization. At 8 days old, she had a shunt inserted. At 4 months old, she still only weighed 7 pounds and had to have a feeding tube inserted because she was not eating enough, nor gaining weight. At 4 months old, she had a second heart catheterization. At this four month mark, Miranda sat holding her in her hospital room. While she held her, “she coded on us.” Scarlett’s body became limp, her skin white and she was barely breathing. Miranda sat there in fear as numerous medical professionals urgently entered the room. Scarlett was having mini heart attacks. She would come through this due to the responsive care that she received and it was a blessing that they were in the hospital the day that this happened.

At 5 months old, Scarlett endured another surgery that kept her in a hospital in Philadelphia for 3 months. Since then, she has been hospitalized numerous times. She is at risk with her health every time that she gets sick. The family generally has medical visits at a local hospital every week, sometimes more than once, often seeing multiple providers with each visit. They travel over an hour one way for these appointments. Amidst all of this, Scarlett will likely need more surgeries in her future.

Miranda describes that while normal living was going on, she found it was tiring and stressful to respond to all of Scarlett’s needs. It was also very scary every time that her health was threatened.

“I could not remember the last time that I smiled, laughed and there was nothing that I could do to shake it. At first, stress was a habit or way of life.”

Miranda shared that after Scarlett had the heart attacks, she was sedated in the hospital waiting for another surgery. Miranda had learned that she had to go and do something during these times to keep herself busy and to calm her mind the best that she could. She went to get something to eat in the cafeteria and found herself wandering the hallway in the cardiology unit. She came upon a bulletin board that was filled with letters from other parents who had children with heart issues. They were placed there in hopes to give advice or solace to other parents who had been in similar circumstances. Miranda reminisced about what she read from one mom,

“Worrying does not change the situation. Your child needs you to be happy.”

The message also conveyed that one does not know how long they have with their children and that their time needs to be void of stress to live it fully.

Miranda said that when she read this, a shift happened in that moment. She said to herself,

“This is not how I need to be for Scarlett and Noah.”

She moved from anger and an attitude of, “Why me?! Why is this happening?” to what she spoke of as “normal stages of grief and a place of acceptance.”

Miranda said that she realized that the worry was not helping anything and that there will always be health risks for Scarlett. She decided that the fear must not be the primary focus. She has learned to put it in the back of her mind, not to ignore it, but to be vigilant of Scarlett’s care. She says, yes, they have appointments and the medical issues are “front and center,” but central to raising Scarlett is her daily living, meeting milestones and them being a normal family.

When I asked her about her learning and what advice she would give others, Miranda said,

“Worrying will change nothing”

I want to thank Miranda for her willingness to be vulnerable in sharing her story with Scarlett in hopes that it might inspire another. I know that for me, I walk away a better person having met both of them and inspired about Scarlett’s light of living in the world. Blessings are in my heart for Scarlett and her family and the ripple effect that her living has already started to make in the world.

Miranda recommended a couple of resources for family’s in similar circumstances and in need of support and/or for those that wish to give back through a donation.

The Parents Letter Project is a program of Children’s National. The website has resources for parents of children with heart conditions. Support is provided through videos and letters of advice from one parent to another. Watch this video for more information:  https://www.youtube.com/watch?v=Q1iwamlt6Y8 The website for the organization is: www.aparentsletter.org

The Mended Little Hearts, is an organization that provides support to children, families, and caregivers impacted by congenital heart defects in order to extend and improve quality of life. They provide a number of services, including providing care bags to families in the hospital and funding research.