‘Her brain barely exists. Enjoy her while you can.’ I pinched my arm. I wanted to wake up from the nightmare.’: Special needs dad recalls daughter’s journey, ‘Her spirit is contagious’

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“My wife, Erica, and I sat in the doctor’s corner office as sunshine beamed through the large windows. It was September 25, 2001, and we were getting the worst news of our life.

When expecting your first baby, you do not want to make an appointment with an obstetrician specializing in high-risk pregnancies. In fact, Erica is such a huge advocate of natural birth she did not want to be in a doctor’s office at all. A week previous, I made the decision we were going to have a sonogram simply to confirm our baby was right on schedule and there was nothing to be concerned with. After all, Erica was almost 8 months along, and we were planning to have the baby at home. It took her a year to convince me homebirth was viable so, at a bare minimum, I wanted a clean bill of health.

The sonographer looked and looked for over an hour. We were getting frustrated and thinking she was simply not really good at her job. It turns out, she ‘could not see something’ and needed the doctor to take a look himself. He came in and looked for about 10 minutes before asking us to accompany him to his office. That walk was somber and eerie. Sort of like going to the principal’s office in fifth grade. Why were we walking back here? What was he going to say?

Once we were situated in his office, Dr. Berry looked across his desk and compassionately said, ‘This sonogram is very concerning. The ‘something’ the sonographer had not seen was your baby’s brain.’ He continued to say our baby had severe Hydrocephalus and would be born with serious birth defects.

As the doctor explained the birth defect and the prognosis, I felt as if I was dreaming. My head was spinning. I literally pinched my arm in hopes of waking up from a nightmare. Tears quietly streamed down Erica’s cheeks. For the first 15 minutes, I was in pure denial. I wanted to walk out of the room and start all over again. Thoughts shot through my mind at a thousand miles per hour. ‘Surely, you have this wrong. Let’s try the sonogram again.’

At this point, we said, ‘Please tell us the sex of the baby. If we are traveling this path, we want to know everything about the baby.’ He managed to give us a little smile and say, ‘It’s a girl.’

8 long weeks later, our daughter was born into the world.

Courtesy of Robin Steele

We had ridden the roller coaster of emotion. ‘Our daughter is born! We named her Kennady! What a miracle! She has a horrible diagnosis… She is recovering well! She looks different than normal babies.’ We were up and down. Up and down. We are so grateful for the multitude of friends and family who surrounded us during these hours of celebration, questions, and loss. The doctors immediately performed an MRI to determine the extent of our daughter’s condition. We were led into a small, dark exam room. The doctor slowly told us our daughter had a much worse condition than they originally thought. He said, ‘Her brain is barely existing. What portions she does have are seriously deformed. She will most likely live 6 to 12 months. You should take her home and enjoy her while you can.’

Courtesy of Robin Steele

2 days later, I was standing by Kennady’s crib in the neonatal intensive care unit. She had tubes hooked up everywhere. Machines were blinking stats to hospital staff. There were nurses walking around and probably 30 other babies in cribs very close by. We had to wear gowns and face masks in order to protect the infants from potential illness. I looked down at the foot of the crib and I saw something that I would never forget for the rest of my life…

At the foot of the bed was a clipboard of doctor notes. It is typical to leave a chart at the crib so doctors and nurses on other shifts can keep apprised of the patient’s situation. I just happened to glance down at the last line of the progress report. The doctor had written: ‘The parents understand there is no chance of their daughter having a meaningful life.’

I was crushed. I remember anger growing inside. I thought, ‘My daughter has meant more to me in the last 2 days than you will ever mean to me.’ I was ticked. How dare a doctor determine the ‘meaning’ of a person? This experience was just the beginning of our journey to learn first hand WHERE meaning comes from. What defines meaning. The value and dignity of LIFE. What is beauty? What is normal?

Courtesy of Robin Steele

The questions have rolled around in our heads. What would our daughter have to do to be meaningful? Would she have to talk? Would she have to be able to solve math problems or perform in the school play? Graduating? Getting a job? Getting married? At what point would the doctor say, ‘Okay, you are meaningful now.’

In a strange way, I was actually glad the doctor had written that. It has forced us to press into this philosophical perspective. What if a person’s meaning had nothing to do with what they did or accomplished? What if a person’s meaning came from them…being. We are human beings after all. Not human doings.

Courtesy of Robin Steele

This month, we will celebrate my daughter’s 19th birthday. I can tell you with the greatest confidence when you take her by the hand, her sparkly eyes meet yours, and she bursts out in the cutest giggle, you will say she means something to you. She brings joy to the world by simply being… Kennady. She is just herself. We proclaim her value and meaning over her. We love her and accept her. We require nothing from her, and yet she means the exact amount to us as our other two sons who are extremely normal 14 and 16-year-olds.

Courtesy of Robin Steele

Unfortunately, the rest of us spend our lives striving for significance and meaning based on our ability to perform. We crave the attention and acceptance of others, and most times it is never enough. I think we can all learn so much from Kennady. After spending just a little time with her, it is obvious she loves and accepts everyone. Her love and spirit are contagious. Her simple mind weeds out all the fluff and is able to focus on what matters the most… being with those you love.”

Courtesy of Robin Steele

This story was submitted to Love What Matters by Robin Steele from San Marcos, TX. You can follow their journey on Instagram, Facebook, and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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