My sista cousin, Jennie is taking a course which has her doing a presentation about children with disabilities. She asked if I might email her a few paragraphs discussing my son, Dylan, who is hearing impaired. It got me thinking about his story might so with Dylan's permission, here it is.
I remember looking down at the early pregnancy test and seeing a faint, nearly indiscernible, black hash in the "YES" column. I stared at it, willing the mark to grow darker. I wanted to be pregnant, desperately, even though the medical community had told me that pregnancy would not be an easy experience. Three years previously, I had been diagnosed with cancer of the cervix and although it was discovered at the earliest stage, I'd still had to submit to several invasive procedures including conization, which jeopardized fertility and left me physically compromised. Still, when it was confirmed that Dylan was on his way, I was beyond thrilled. I had figured that conceiving would be the hardest part. Not so.
Everything went according to plan until I was 28 weeks along and started to dilate. I was given two shots of the steroid, betamethasone for two consecutive days in an effort to mature Dylan's lung tissue. We knew that I wasn't likely to carry him to term and I was put on strict bed rest to try to make it to 32 weeks. Luckily, things went really well and I didn't go stark raving mad into labour until my 35th week. Dylan came out like a bullet, screaming his head off which was music to my ears. His lungs were obviously in good shape. He had ten fingers and ten toes and after inspecting his nether regions, I was relieved to note that he was most definitely NOT a hermaphrodite, which was only one of my many irrational fears while pregnant.
He was born very late on a Tuesday night. We were released from the hospital on Thursday morning and by Saturday afternoon, Dylan was unresponsive. Panicked, we rushed him to the hospital where he was diagnosed with hyperbilirubinemia. Simply put, this meant that Dylan's liver had not matured enough to breakdown the bilirubin in his system and he had become dangerously jaundiced. Jaundice occurs to 60% of all newborns and 80% of all preterm babies. Treatment is simple and effective, though. Dylan was bathed in ultraviolet light for twenty four hours and voilà, he emerged with an appetite and a creamy complexion.
In the beginning, I didn't notice anything wrong with him. In fact, my entire family and I marveled at how serene and happy he was. Dylan was an easy, easy infant. He rarely cried, ate well, slept well and was an absolute joy. I did find it slightly odd that while he napped, I could vacuum nearby without waking him but I just attributed this to my good fortune for having the best baby on the planet. As he grew, I was slightly concerned that he didn't coo like other babies. The pediatrician told me not to worry and that those verbal milestones that I was reading about were general guidelines. She reassured me that each baby was different and Dylan would find his voice at his own pace.
By the time he was eighteen months old, I knew in my heart that there was something definitely wrong. Other babies were stringing together a few words. Some were speaking in sentences. Dylan, on the other hand, would grab onto my pant leg to get my attention and then point at whatever it is that he wanted. One day, as I found him watching my lips intently as I spoke, I distinctly remember thinking that there might be something afoul with his hearing. Again, I discussed this with his doctor and was basically told that I was worrying over nothing. So, feeling like one of THOSE stereotypical crazy mothers, I took my son home and waited for him to utter a few words. Then, the ear infections began and for nearly a year, our life became a living hell.
Dylan was in and out of the pediatrician's office with one ear infection after another. He was constantly on antibiotics. We learned through a rather frightening incident that he shared my penicillin allergy and consequently, he was put on stronger, more robust, wide spectrum drugs. One early morning, Dylan showed up at my bedside stroking my face and pulling on his ear. Tears were rolling down his face but he wasn't making a sound. I finally snapped. That day, I begged an otolaryngologist (ear, nose and throat guy), to see Dylan without a referral. Dr. P took one look into Dylan's ears and immediately scheduled surgery to insert tubes and remove his adenoids. He was appalled that Dylan had been on antibiotics for so long without any measurable relief and could not fathom why nearly a year had passed without surgery being presented as an option. I mentioned my concerns about Dylan's hearing and for the first time, I received the acknowledgment that there might be a problem. Unfortunately, we would have to wait until after the infection had drained to make a proper assessment.
Dylan woke up from his surgery with thick gobs of blood infused pus streaming out of his ears. I rode in the back seat with him on the way home from the hospital, stroking his arm and telling him that I was sorry, so, so, sorry for not doing something sooner. That car ride was a significant turning point for me and my confidence in the medical establishment. Never again, would I ignore my instincts where the health of my child was concerned.
And this new resolved served us well in the next couple of years as we navigated the services available for a child with disabilities.
