darthdog1976

@darthdog1976
As a parent of a child with a rare genetic disorder that has the potential to leave my daughter both blind and deaf, there has been significant challenges for our family in facing the daily challenges that her syndrome presents. There is hope. There is happiness in the midst of sadness. More so, there is faith in believing that there's a purpose for all of our struggles.
Community Voices

Grace Under Pressure

It’s not every day a life changing event occurs. In fact, in most of our lives, there might be a handful of moments that you can vividly recall where the course of your life dramatically changes, whether for the best or worst of circumstances. Some of these events can be explained, while many cannot. Many times we explain it away as either good or bad luck. Depending on how you view the situation determines how you ultimately deal with the serendipitous moment.

For me and my wife, one of our life’s defining moments of change was on January 14, 2010. That was the day our second daughter was born.

Looking back during the pregnancy, there were two events that seemed non-related at the time, but now seem to have relevance for us. Two events that occurred while my wife was pregnant that could have eerily foretold the future of our daughter.

The first came as we talked about and prepared for the newest member of our family. During the nine months of pregnancy, my wife attended all of her prenatal visits and received the utmost of care from the medical professionals. The regular prenatal tests were done, always with excellent results. The sonogram showed that the baby had two legs, two arms, and her heart rate was regular. No evidence to show anything was abnormal with the exception of one comment my wife made while looking at the side profile of the baby’s head from the sonogram.

“Her chin looks a little small”, I can recall her saying. But it was a passing comment as we continued with the preparations of our daughter’s arrival.

The second occurred one day as my wife was at the mall. She noticed a young mother walking a stroller with a set of infant twins. Nothing unusual about that, except that these two babies were both wearing eyeglasses. Being that this is not a common sight, my wife stared at them and in her curiosity, she approached the young mother to inquire about the glasses.

“Are those real glasses?” she questioned.

A look of annoyance and somewhat tiredness of always being asked this question seemed to be expressed on the young mother’s face.

“Yes, they’re real.” She replied.

“How did you know that they need them?” my wife asked.

Once again, the young mother’s face looked as if she’d been asked this question several times before.

“Just like they check adult’s eyes.” She responded.

The conversation was short, but my wife could tell by the look on the young mother’s face that she was used to receiving looks of curiosity about her children and responding to people’s inquiries.

How odd to think that now my wife and I share that same experience as that young mother.

As the day of the baby’s arrival soon approached we began talking about what name would we bestow upon our daughter. I wanted her first name to be

Zacharina (only in jest) in honor of her father, but we opted for a name less conspicuous.

We struggled to find a middle name to compliment her first. But as my wife tells it, our daughter’s middle name was impressed upon her by God himself. It occurred one night while my wife was thinking about the pregnancy. The baby didn’t kick as much as our first born had. For some reason, she was concerned about this newborn. A word popped into her head.

Grace.

She felt that with this child a lot of “grace” was to either be shown to her or shown by her. Nonetheless, her name was chosen.

We arrived at the hospital ready for our daughter’s long awaited appearance. We had a few hours to wait until the contractions came and the birthing process began. There was no way that we could have prepared for what awaited us on the other side of that moment.

As my wife began to give birth, I sensed that something different from our first experience with our oldest daughter was occurring. The baby’s heart rate had slowed and there was a question as to if she was able to receive oxygen. The answer to that question was evident as she arrived with the umbilical cord wrapped around her neck. She had been strangled while coming out of the canal. The nurses quickly cut the cord and un-wrapped it from around her neck.

I wondered if this was the reason why she appeared so swollen. So uncharacteristic of what I expected. Something inside the pit of my stomach told me something was wrong, but I couldn’t place my finger on it. Her specific facial features seemed somewhat recognizable. I used to be a social worker and worked with developmentally disabled adults. I could usually tell those adults who had Downs Syndrome by looking at the shape of their eye folds and neck. Our daughter had those similar facial features.

As the medical staff began to clean her up, my wife asked me if the baby was o.k. Thinking that I might be overreacting, I mustered the confidence to say that the baby was fine, but something lingered within me.

As the nurses placed our daughter on my wife’s chest to breast feed, the baby would not take to it. Upon further inspection by the doctor, it was discovered that the baby had a cleft palate. Also, the chin of the baby was unusually small.

The doctor excused himself. A few moments later more medical staff was present wanting to inspect our newborn. At that moment, I knew for a fact something was amiss. I could see the concern on my wife’s face. This wasn’t something we had prepared for.

We were taken to the newborn section of the hospital as the doctor’s readied various medical exams for our daughter. Apparently, there was a pre-diagnosis that she had DiGeorge Syndrome.

Neither my wife nor I had ever heard of such a thing. Questions swirled around our heads. What was this syndrome? What were the physical and more importantly, mental effects of this syndrome? Would she be alright?

I’ve traveled the world by myself, I’ve been threatened with death on various occasions, I’ve almost been paralyzed, and I’ve been in some unsightly, horrid situations as a social worker, but those things don’t compare to the amount of fear I experienced the first night by daughter was born. Not knowing what was happening with her frightened me. It frightened my wife as well. Even as I think about it today, tears well up in my eyes.

In the darkness of the room, all we could do was pray and ask God for His mercy and for His grace for our daughter.

Blood was drawn from our daughter’s little body until she couldn’t give anymore. Various tests on her heart and kidneys were done. During one of these tests a nurse must have seen the concerned look on my face.

“Don’t worry.” The nurse said. “Your daughter will be a blessing to many people.”

A “blessing” I thought. My child who appears to have special needs will be a blessing? A sense of doubt overwhelmed me. If only the nurse knew. If only she could see the fear and anger rising within me. What kind of “blessing” comes with a #Disability? What kind of hope comes with not being “normal”?

The shock of a lifetime came as the hearing test was conducted. Our daughter was deaf.

More questions began to enter my mind. What kind of life will she lead without being able to hear? How will she communicate to us? How will we communicate to her? The list of worries grew.

One possible diagnosis was presented to us. It appeared that our daughter had Stickler’s Syndrome, which is a rare genetic disorder due to a lack of collagen. Collagen is used to develop cartilage in our bodies. Due to this deficiency, not only was our daughter deaf, but she was extremely nearsighted as well. She would need eyeglasses as an infant.

Because our daughter was diagnosed with a hearing impairment our name was placed on a registry for children who are deaf or #HardOfHearing (hoh).

Thankfully, there is a system within the State that provides information and direction to parents of children who are deaf or hoh.

It’s been nine years. Our daughter, Grace, is receiving various types of therapy and services to assist with her communication and development. She now wears hearing aids, and without exaggeration, everywhere we go people stop us to ask about her little red glasses that she wears.

Grace is a true blessing to many people. Because of her, my wife has found her calling in life to be a Sign Language interpreter and is now attending school to obtain her signing certificate.

Our family is also learning American Sign Language (ASL).

Oddly enough, I find that I can thank God for Grace’s Stickler’s Syndrome. We’ve met so many nice people who we’d never would have the pleasure of knowing if it hadn’t been for Grace. She brings a smile to people’s faces whenever they see her. In a sense, she lights up the room. She has shown me what really matters in life, her life serves as a reminder to appreciate each day for what it is; a gift.

There was no good or bad luck in the way she was born, it was by divine design. In some way, I feel that that we were chosen to be her parents. Knowing this does not make the road any easier to travel as we move forward, but I know that hope is there and so is grace.