The Walker Family Story: Stepping Up for Daniel
By Valerie Walker
Chuck and I welcomed Daniel Jacob into the world in February, 2003. We were elated to meet our already chubby 8.5 lb. baby boy. He was just as beautiful as we had imagined during those long months of pregnancy. We had involved our five year old son, Caleb, and three year old daughter, Rachel, throughout the pregnancy and they seemed to be just as excited! They were in awe of their new little brother. It was exhilarating to embark in this new phase of our lives growing into the big family we dreamed of.
Labor and delivery went well, albeit long, and we were preparing to go home with our new precious baby. The nurse was going over the usual discharge instructions and mentioned he did not pass the newborn hearing screen. “Not to worry, many newborns retain fluid, but we need to return to have him retested,” she said. The following week I took him back for a retest. After a long afternoon trying to get him to sleep for the test the nurse finally let us know he did not pass and we should take him to an audiologist. A no pass? Why? What does that mean? My barrage of questions did not yield many answers but the mention that it could be fluid stuck out in my mind. My immediate thought was his big brother, Caleb.
Is it Fluid?
Caleb suffered chronic ear infections starting at five months. Along with his pediatrician and ENT, we had tried many different approaches in our attempt to remediate the fluid and resulting infections. Because he was so young we had put off surgery for tubes as long as possible. This resulted in Caleb having a speech delay that we had never even considered as a possibility. It appeared Daniel too may suffer with fluid and consequent ear infections, but we would do things differently this time. We had learned from our mistakes and would pursue having tubes placed if needed.
Chuck and I had a brief conversation about a possible hearing loss but quickly dismissed it. There was no history of hearing loss in either of our families but a clear and definite history of fluid/ear infections. I discussed my concern with our pediatrician and other parents and learned that some newborns retain fluid weeks after birth and decided to “give it awhile” hoping the fluid issue would not be chronic. We would have to wait and see.
Peaceful Slumber to Discovery
Our “wait and see” period lasted three months. It may have lasted much longer had Caleb not come barreling in one day slamming the door. Daniel was sleeping only a few feet away and had no reaction; not a stir. We had noticed Daniel was an amazingly sound sleeper but contributed this to having older siblings. But this was LOUD. It was time to pursue the referral. He must still have fluid in his ears.
The search for an audiologist was less than smooth; we consulted the yellow pages and devised our own mantra: “ Dex does not always know.” After a long search and a plethora of phone calls, finally Daniel and I stumbled into a pediatric audiologist’s office. Thank God she turned out to be one of the best with amazing patience and dedication! I walked in confident that what we really needed was a referral to an ENT, wondering aloud what age tubes could be placed. I remember sitting there hopeful that the tympanogram would show a nice “mountain peak” (unlike any of Caleb’s) indicating normal middle ear function. She explained a positive result for Daniel could indicate a hearing loss. A hearing loss? I was processing through this previously dismissed idea as the perfect mountain peak that had eluded us for years appeared on the screen. There was no fluid. Daniel had been born with a moderate to severe sensorineural hearing loss.
I became the deer in headlights cliché. I went from “knowing” what the problem was and possible solutions to a foreign land I knew nothing about. I went from feeling that I was getting a head start on the problem to feeling that I had dropped the ball. Gazing down at my peacefully sleeping baby, I mourned that he would meet life already facing significant challenges. My heart ached as I wondered if he had heard our voices; words of comfort or lullabies at naptime. I was overwhelmed with sadness, fear, and uncertainty. When I shared the news with Chuck, friends, and family, it pained me that I had no answers but instead a flood of my own emotions and questions. What can he hear? What about communication? His future? What can be done?
Online Obsession
I panicked. I began a search, an obsession to find out all I could about hearing loss, progression, statistics, parenting, guidance, anything and everything. I read articles, books, and websites searching for answers to be better equipped. I had to step up for Daniel. Everything I thought I knew about parenting went out the door--I had no idea how to be a parent of a child with hearing loss. My greatest fear was we would fall short and he would suffer the consequence.
At the audiologist office a week later, it was very telling as I fired off questions about the tensor tympani reflex and vagus nerve. She knew I had been on the Internet one too many nights. She explained that we will not have all the answers right now and likened it as a process -like putting together a puzzle. The pieces will come together over time. There were no hard and fast answers or solutions. There was no “how to” parenting guide or research that would predict the future. I felt like I was in limbo, unsure and unsettled.
Appointments, testing, early intervention and all the related systems, language, and acronyms swirled around us. Dazed and confused at times, we forged ahead on this venture to gain a better understanding of hearing loss and implications, a new vernacular, and communication/intervention choices. Chuck and I decided communication with Daniel was essential and the first area of focus. We chose a total communication approach, ordered hearing aids, enrolled in sign classes and early intervention services through CHIP. Slowly the pieces of the puzzle were coming together and beginning to make sense.
Finding Peace
I remember it vividly. I was driving with Daniel in tow for testing for the umpteenth time. Several hectic months had passed since the revealing appointment at the audiologist office. Today he was going for another test to determine the cause of his hearing loss. This day was different though, during the quiet drive I reflected on a new place of peace. I no longer felt panic-driven and an answer of “why” at this point did not seem nearly as urgent. This is who Daniel is. And he is still our perfect baby. I had heard people referring to raising a child with hearing loss as a journey but this day I fully understood the meaning and my campaign to find answers took a back seat to accepting a journey.
One of the most powerful events in our lives I contribute to this change is in meeting other families who have children with hearing loss. We also met adults and professionals with various ranges of hearing loss and communication choices. My perception and fear of hearing loss had changed. I found we were not alone in this foreign land; it was not so scary but full of amazing and interesting people with unique stories, ideas, interests, and dreams.
From Soundbooths to Football
It is hard to believe how quickly the years have passed. We are getting ready to celebrate Daniel’s eighth birthday. Through the years we’ve welcomed another son, Samuel, into our family. We have our big family (we decided four kids is big enough for us!) and strive for a balance between enjoying today and being prepared for tomorrow. Daniel is a second grader this year and attends his home school. He uses an FM system in the classroom and is a true master at explaining his hearing loss. He is becoming a great self-advocate and will quickly and adamantly alert others if his hearing aids or FM are not working properly. But that is only a part of who he is. He is also quick to tell about his favorite activities: reading, football, outdoor activities, building Lego masterpieces and of course video games. He has a vivid imagination, a fierce curiosity, and a stubborn (ahem, I mean “strong… determined”) personality. Today he wants to be a police officer; last week he aspired to be an author, and tomorrow, who knows? Like other children, Daniel’s interests, ideas, decisions, and circumstances will change and he will have obstacles to overcome. In knowing that, I am comforted and amazed at the resilient nature of children and all that they have to teach us. I don’t know what the future may hold for any of our children but I am so thankful to be on this journey together.
Valerie lives in northern Colorado with her husband, Chuck, and four children; Caleb, Rachel, Daniel, and Samuel. Her third child, Daniel, was diagnosed with a moderate – severe hearing loss at three months and now attends his home school in second grade. Meeting other families and involvement with CO Hands & Voices was very impactful for her and her family. She is eager to join the GBYS program in providing the support, connection, and resources that were so valuable to her family.
Valerie Walker
970-373-7091
“The future belongs to those who believe in the beauty of their dreams.”
Eleanor Roosevelt