[Today’s guest post by Feleica Langdon is part of our paid blogging program. Feleica is a provincial pro-life speaker in Newfoundland, founder of Life Defenders, and the regional coordinator in NL of Campaign Life Coalition working alongside the provincial coordinator, Margaret Hynes.]
When Jeannie Ewing was pregnant with Sarah—her second child with her husband Ben—everything seemed to be progressing normally. The Ewings opted out of the amniocentesis and nothing abnormal showed up on ultrasounds. When their daughter was born, it was discovered that she had Apert Syndrome.
Upon physician consultation they were told what Apert Syndrome was and the challenges they and their daughter would face.
Apert Syndrome is a condition that causes people’s skull and facial bones to harden prematurely, which means they don’t have the soft spot (fontanelle) as babies on their heads. Their skulls are already fused at particular sutures. These sutures need to be opened up in order to allow the growing brain room to expand. Because of this, people like Sarah have very distinct facial features and often misshapen heads. They have droopy eyes, a small nose, protruding forehead, and small mouth.
Throughout their lifetime, people with Apert Syndrome undergo on average between 20 and 60 surgeries. It’s a very mysterious disease and there is still much research to be done. Some people with this condition die prematurely from complications of surgeries and undiagnosed secondary conditions, like seizures or heart ailments. It’s a very sneaky disease.
The couple was shocked! They didn’t know how long that they would have with Sarah or even what their lives would look like, but their love for her surpassed any prognosis they were given. They certainly didn’t want a life full of surgeries and therapists and specialists, but she was their precious baby girl!
Sarah’s life has taught them to never take time for granted and that every person has a special purpose in this word. No one on earth is guaranteed a long life.
The Ewings have gotten to know other families of children with Apert Syndrome; tragically, three of those children have died prematurely. The Ewings weep for those children taken far too young, and their parents who are left with unfathomable grief. They also reflect on their own daughter and are faced with the question of if the condition will cut their little girl’s life short too.
Apert Syndrome is a fragile condition; it is like a sniper that attacks seemingly at random. As with many diagnoses, Apert Syndrome doesn’t discriminate. It doesn’t care how old you are, how many loved ones will be left behind to grieve, or what great moments that will be missed out on. It is because of Sarah that her family hold their loved ones that much tighter!
Their big-hearted warrior has also taught them that we all have our own unique attributes, challenges and imperfections, all of which should be embraced. Every challenge we face has something beautiful to teach us and the world. Jeannie says:
Sarah, because she looks different, reminds people who encounter her that we are all fallen and broken in some way. She wears that on her face, while some people’s brokenness is hidden. In her brokenness, there is beauty. There is joy. There is love. She is very social. She accepts everyone wholeheartedly and allows people to be comfortable in who they are around her. It is because of that I have had incredible conversations with perfect strangers when her and I are in public. Sarah gets to the heart of what matters to people.
Families who are faced with extra needs need extra support. The Ewings’ hearts fill with gratitude for all of the help they have received. They had several friends who helped keep house, offered free babysitting, helped with fundraisers, sometimes made monetary or gift card donations, and prepared meals after surgeries. Jeannie’s friend, Julie, has also been there for her personally:
I think, when you are a caregiver, it’s easy to get lost in the person for whom you’re caring. But my friend saw that and frequently came to our house to check on me, not Sarah. She asked if I was getting enough rest, if I needed anything, how I was coping, etc. She brought over “mommy” care packages with dark chocolate, nice lotions and soaps and local honey.
In addition to this, a gentleman named Brian Sapp made cherished videos of the Ewings. He is a professional videographer/photographer and teaches media to middle school students. He spent hours interviewing the family and putting together a video for their website.
If you have been given a prenatal or post-natal diagnosis, reach out to life-affirming and supportive resources around you. Get educated, connected to support groups, and accept help from your inner circle. Embracing life knowing you are supported EMPOWERS!