Faith ~ Stephanie Taylor-White's Story

When my daughter was diagnosed with Down Syndrome I felt devastated in a way I knew was not healthy for me or for my daughter. I was driven to get to the bottom of my grief so that I could be the best mother I could possibly be.

It took 2 years and 1 miscarriage to get pregnant. I am 37 years old and feel lucky and grateful and so happy a child is going to happen for me and my husband Doug. The ultrasound shows she is a girl - quite a surprise because on my husbands side of the family his 3 brothers have almost all have sons, this will only be the second girl. I go in to labor 2 weeks early and only 1 hour after easing myself into the birthing tub at the birth center she is born. But she is not breathing and the midwife tells us to call to our baby and I know she means call her spirit into her body. All I can say is "You can do it" and visualize gold light coming from above all around her as they resuscitate her. Doug is calling her name softly, "Faith" - the name I knew years before getting pregnant that I wanted if we had a daughter. It was my middle name and my mother's middle name. Within minutes Faith is breathing, coming to life. She is here with us. We stay at the birthing center for a few hours, she is nursing well and we get to go home. I feel so content, so fulfilled holding my baby girl after such a scare. All seems as it should be as we arrive to our 10-day appointment with the midwife. But the midwife says she is concerned, she sees something about Faith that is not quite right, she has a heart murmur, and she is still so loose and floppy for a 10-day old baby. She wants us to go to Seattle Children's Cardiology and the Genetics department. I feel stunned, surprised, overwhelmed and hold Faith even closer in my arms. But the part of my brain that solves problems and gets organized kicks in and we get her appointments set up, making many trips to Children's for doctors' visits, a cardiac ultrasound and blood draw. Faith will need a heart surgery and we get the final confirmation I knew was coming: Faith has Down Syndrome, 3 copies of her 21st chromosome.

That diagnosis sinks deep into my soul. Even though I knew it before the phone call, this official verification from the geneticist hit me hard. A well of sadness comes to the surface, I am crying. I tell myself "Of course I am crying. I am a mother worried about my child's future navigating the world with a disability." I am crying every day, a lot, for a week. I give myself space to feel what I need to feel even though I am normally not much of a cryer. I know myself to be a resilient, optimistic, accepting, open-minded, problem-solving person. But instead of feeling those things, I am still crying for a second week, feeling lost in a level of grief I don't quite understand. I knew deep down something was not right with me. At night I can't sleep between Faith's nursing every 4 hours. I decide to pray, ask God to reveal to me the true cause of my sadness. What comes to my awareness is that since childhood I have been insecure about not being smart enough in school, that I always driven to achieve academically to prove I was smart. I would harshly judge myself for any wrong answer, any score under 100, any missed extra credit. It drove me to get A's in all my classes, graduate high school with a 4.0, an academic scholarship to the University of Washington and get me through Naturopathic Medical School. An attitude that only hurt myself but served a purpose was now a liability for me as a mother. I knew that what I judged harshly in myself would negatively affect how I would see Faith and her challenges. I knew those that judged others harshly were the most judgemental towards themselves. If you don't accept yourself, you cannot fully and completely accept and love others. This realization immediately healed my heart and my grief. I felt freed and happy again. The deep sadness was pulled out by the root. I was able to love Faith without reservation for whoever she was meant to be. Now I could focus on the therapies to help her with the spirit of wanting her to be her best self and not because there was anything wrong with her, not to fix her.

I wanted to be the best, most loving mother I could be with the optimism and positive energy I always felt in my work with patients, with friends and in my marriage. I could not bear feeling so constantly sad about my own child. Of course there will always be sad moments in the life of being a mother, I don't want to deny that, but it can't be the dominant feeling. My first action was to pray for an answer. Facing the judgement I had of myself, that I was not enough in this way, allowed me to be more conscious of my actions and feelings towards Faith. When we have unconscious negative beliefs they affect our lives in not a good way, can even cause damage. The first step to healing emotionally is the awareness of where that unhappy feeling comes from.

The only doubts and fears were really only my own. There were no challenges or obstacles, except my own, because my husband found it easy to immediately accept Faith just for who she was from day one. The diagnosis did not change how he felt. I am blessed because my family all loved and accepted Faith easily without judgement. This created space for me to just focus on my own personal issue.

When I was able to embrace my natural ability to be strong and optimistic I still experienced worry and fear during Faith's health challenges with a heart surgery and a seizure diagnosis she also had as a baby. My sister-in-law was a tremendous support to me as her daughter had many health challenges as a baby and toddler as well as being diagnosed on the autism spectrum. She fully understood what I was going through as a mother. My husband was such an amazing support, he gave me space to work things out for myself without judgement.

Courage is facing my own demons head on. To look deep inside myself to heal my own source of unhappiness so I don't blame others or my circumstances for my unhappiness.

I am responsible for my own happiness which in turn brings happiness to others. I won't let negative beliefs or doubts run my life. The most unexpected outcome from this experience has been Faith's amazing achievements. She learned to read most words by the age of 4 and was reading children's books by the age of 5. Her biggest developmental delay was her motor skills. She sat up at 12 months, crawled at 17 months and didn't walk until 2 1/2 years old. I put her into a special needs cheer program at 5 to develop her motor skills and she really loved to perform. When she was 8 she started dance classes (with neurotypical dancers) and for 14 years has been learning ballet, jazz, lyrical, tap, latin ballroom, and hip hop. Now at the age of 22 she has been on a competitive dance team for 6 years where she is almost always the only special needs dancer at the events. Faith says that her purpose is to inspire anyone with disabilities to follow their dreams. She is truly self-possessed, self-confident, incredibly passionate about dance, and more motivated than most people I know.

Look inside yourself for limiting beliefs that are holding you back. Clear those and you will find more strength, positivity and motivation to be the best you can be. If you are judging yourself for not being enough, work on that in whatever way you can so that you can be a better mother and role model to your child or children, a better friend, and a better partner.