Today’s blog post comes from one of my amazing Alpha Chi Omega sorority sisters named Cressie Boggs. She has educated me on Trisomy 18 through her personal experience with her daughter, Caroline. If you don’t know what T18 is, please read her story below (feel free to share it too!) and check out the yummy cookie recipe she shares at the end!
My name is Cressie Boggs and I want to share my daughter Caroline’s story with you. Caroline is 10 months old and I am her voice. Let me start by sharing our story of how Caroline joined the world…
I am a very positive person. I know everything happens for a reason, although I may not understand it at the time. I was glowing from being pregnant with my third child. I was proud of my family and excited for my two children to have another sibling join them in our Bogg Family. Everything about my pregnancy was normal up until 23 weeks.
Here I am, a pregnant mother at 23 weeks pregnant, my husband and I were brought into our midwives office and asked to sit down. She informed us that our unborn child tested positive (via materniti21 blood test) for Trisomy 18. At that moment, I was confused and unsure what the future laid ahead for my family and I. Next thing I know, I found myself researching and learning about Trisomy 18.
This is where our journey started…
What is Trisomy 18 you ask?
Simply put. It is a chromosomal abnormality that resulted from her having three copies of chromosome 18. Trisomy 18 occurs in about 1 in 7,000 live births.
However, it is more common in pregnancy but due to the serious physical defects associated with the condition, many babies don’t survive. About half the babies who are carried full-term are stillborn. Of those that do survive, less than 10% live to reach their first birthday. Caroline is two months away from her first birthday!
Caroline Grace entered this world on May 11, 2015 weighing 6lbs and 1oz. We heard her soft cry, saw her pink skin… but most of all she was breathing. That moment alone was an emotional amazing experience knowing my child was alive! I had been preparing myself for the chance she would not survive and I would not hear her cry, see her tummy move or look into her eyes and have them look back at me.
My husband and I didn’t know how much time, if any, we would have with our daughter. Each second we spend with her is a gift. We cherish her milestones and celebrate them!
She is a fighter. She is OUR miracle.
When we received her diagnosis, we vowed that we would always follow Caroline’s lead.
God not only chose us to be her parents, but he chose her for us. She has taught us so much in these past few months. She has taught us that the little things are the big things, and that life is too short to not live every day to the fullest.
His plan was intentional.
Caroline has several anomalies ranging from facial paralysis, microphthalmia, clenched fists, weak muscle tone and severe heart defects. She cannot eat orally and has to be fed via an ng tube. Although to the average human these anomalies are ‘strange’ to us they are what make Caroline who she is, an amazing special little girl.
Caroline’s journey began when she was born. She has physical and occupational therapy twice a week. We have a nurse who visits and checks her vitals several times a week as well. This is on top of her monthly/semi-monthly visits to her Occularist, Cardiologist and Otolaryngologist.
She will have open-heart surgery this summer. I have been having a difficult time deciding on a date because I’m nervous. So many emotions go through my head… will she be okay, how long will we be in the hospital…. And will we lose her?
My baby girl is gaining weight, holding her head up and sitting with assistance. She is learning to eat orally and even reaching for her toys. She smiles. She laughs. She loves music. All of these milestones are often taken for granted with a new baby. In our household, we celebrate the small things. Yes, we make cakes and indulge in her honor as she joins us cooing by our side!
Caroline may never eat completely by mouth, walk or speak. But, then again, maybe she will. She continues to show us daily she is a fighter. Caroline is strong and with her strength I stand behind her, sharing her story to educate society on how each child is unique. Not only is Caroline learning in her lifetime, I too continue to learn about life. Simply put. What is important. Who is important. What society believes to be normal. I have never been a big advocate or the type of person who believes in spreading awareness. However, I truly am amazed at how little doctors know about genetics. If necessary, I will make it my lives work to educate others on Trisomy 18… because it IS the second most common chromosomal abnormality after Trisomy 21 (Down Syndrome).
No two children diagnosed with Trisomy 18 are alike.
Medical professionals, and society, have noted that these children are “incompatible with life”. Caroline has a brother and sister who adore her. Parents who chose to give her life. She is loved beyond belief. Every day we get to spend with her is a gift. Although, we don’t know how long her journey will be here on earth, we do know that she is very much compatible with life.
Today I’m sharing with you a Chocolate Chip Plantain Cookie. Life is too short to not eat cookies..daily!
Yields: 12 cookies
1 brown plantain
1 tbsp Vital Proteins gelatin
1/4 cup Enjoy chocolate chips
2 tsp vanilla
3/4 cup almond flour
1/2 tsp baking soda
2 tbsp maple syrup
- Preheat oven to 350 degrees.
- Peel the plantain and mash down to liquid form.
- To the plantain, mix in almond flour, maple syrup, vanilla and baking soda to form the dough.
- Sprinkle in the gelatin and blend into the dough.
- Fold in the chocolate chips.
- On a 9×13 pan, using a cookie scoop, place dough onto the pan. Lightly press down the cookie dough to form thick flat cookies
- Bake for 10-12 minutes, until edges are light brown.
- Allow cookies to cook and set, about 10 minutes.
- Best served at room temperature.