One Family’s Journey
“You’re Doing Great!”
By Brooke Montgomery, Kentucky H&V
The first deaf person I met was a tiny human living in my house. My son, Luke, was diagnosed with severe/profound bilateral sensorineural hearing loss shortly after birth. To be honest, I had no idea what I was doing. All I knew then was that I loved him and wanted the best for him.
Therapies and doctor appointments quickly took over our schedules. Signing classes. Researching. Reading books and articles. Finding anything I could get my hands on to learn.
Do we implant? Do we not? What benefit (if any) is he getting from his hearing aids? Do we learn sign language? Can we learn sign language? What will his future look like? Am I doing enough?
I think Luke was about nine months old before I took my first breath. Somewhere along the way I had forgotten to enjoy my baby–my very last baby. There was so much to learn and so much to do that I missed out on enjoying it.
One of our therapists came to the house on a particularly stressful day, and I will never forget what she said to me. She was leaving and turned around and said, “You’re doing great!” A simple message that was so profound for me–a person who constantly felt like I would never be everything that Luke needs.
I have heard it said that hearing loss is a journey I never planned for, but I sure do love my tour guide. I can honestly say at this point in our journey, I would not change a thing. Luke being deaf has been such a blessing in so many ways. The people I have met and the community to which my family now belongs is both beautiful and welcoming. All of our kids change our lives in different ways, and I am so thankful for everything that Luke has taught me.
When I had the opportunity to get involved with Kentucky Hands & Voices, it was a no-brainer. If I could help another parent to not miss out on a moment with their beautiful and perfect baby, I was in! I spent a lot of time in those early days with Luke wondering why can’t everyone just get along? How can we fix the “great divide”?
Hands & Voices bridges that divide. If you sign, great. If you speak, great. Like the motto: “What works for your child is what makes the choice right.” Yes, that is what it’s all about.
Now, I have to watch myself with a newly identified family. I find myself thinking, “You have a deaf kid?!!? AWESOME! They probably aren’t ready for that – YET, but my hope is that every parent of a deaf or hard of hearing child will one day embrace it when given the right resources and community.
Because I realize every child and every situation is different as I meet with families, please allow me to pass along the same encouragement I was given. For all the moms and dads out there with little people who are deaf or hard of hearing, I see how hard your decisions are and how hard you are working.
To the mom (or dad) who chose to sign because you believe elective surgery should be the child’s choice when they are old enough to make that decision, but who lost relationships because people insist you “fix” your child…You’re doing great!
To the parents who chose to teach your child to speak because your child is part of a hearing family and a hearing world . . . whose child is speaking clearer than all his hearing peers, but you still get criticized for not signing…You’re doing great!
For the parent who chose to teach your child to speak because signing was too hard due to your child’s severe CP affecting her hands . . . or because your child will likely not be able to rely on vision later in life to see the signs…You’re doing great!
To the grandparent raising a grandchild who chose to do both . . . who runs to speech therapy and audiology appointments all day and stays up late at night watching signing videos . . . who talks with her hands and mouth from the time she wakes up until the time she goes to bed only to feel like she isn’t giving her child 100% of either language …You’re doing great!
To the mom whose child is “Deaf Plus” and the news she just received from the neurosurgeon is far more pressing than speech therapy or sign classes . . . who worries if her child will ever communicate at all…You’re doing great!
For the foster mom who took in the three-year-old with behavior problems and just found out about her child’s hearing loss . . . who worries it’s too late and feels the urgency of building language like a clanging drum . . . who cries alone because her friends are afraid of her child, yet she continues to pour every ounce of energy into improving this child’s life because that child DESERVES EVERY CHANCE…You’re doing great!
To the parents of a newborn who was recently diagnosed . . . who sits in the rocker holding their baby who feels like a stranger . . . and cries because of feeling overwhelmed and all the conflicting information coming at you…. who feels like they are doomed to failure no matter what they choose or where they turn…You are NOT alone and…You’re doing great!
To the single mom working two jobs and raising kids on her own . . . who relies on teachers and therapists so she can make enough money to pay for equipment and extra therapies because she wants every opportunity for her child…You’re doing great!
To the mom losing sleep at night worrying if her other two kids got enough attention today or if they will resent the time she took to go to a deaf event or sign class or audiology appointment . . . or the fact that she had to walk out of the basketball game because the noise was too much for their brother…You’re doing great!
To the parents scrambling before the IEP meeting, tediously documenting all their child’s audiograms and reviewing state and federal education laws . . . who has prepared both a Mama Bear and a Papa Bear speech, including specific legal information to use if told “no,” but prays that won’t happen…You’re doing great!
To the parents who made choices for a child that work . . . and to those who made choices for a child that didn’t work, but were willing to try something new…YOU ARE DOING GREAT!
Editor’s note: Brooke Montgomery was a Parent Guide in the Louisville area for Kentucky Hands & Voices when this article was published in The Communicator. Currently she is the Social Media Director ant H&V HQ.
H&V Communicator – Spring 2020