I have always enjoyed writing my thoughts down in my journal. It’s so therapeutic, and refreshing. There is something about writing down your thought processes and then reading them back to understand where you might want to change, or grow in those thoughts. But it is a whole new ball game when you write down your personal thoughts AND share them on the internet!
I plan on this being a positive experience, and a help for others who find themselves in the same position I am.
Some background on my little family. We consist of 4 humans, 2 canines and 1 feline. My husband and I are high school sweethearts (awwwww) and have been married almost 9 years now. We have 2 amazing little children, a 6 year old boy and a 4 year old girl. We happily live in a small town outside of a small port city (it’s quite beautiful here!).
As you may have already guessed, I am using this blog spot to help parents who have Deaf children. My daughter was born into this world with CHARGE syndrome (I will elaborate on that in another post) and with that came her deafness. When she was first born, we were aware of her heart condition called Tetralogy of Fallot, and so that was where our focus was. She was failing hearing tests, but they reassured us that this often happens to newborns due to fluids and not to worry.
There. Right there.
That is most parent’s very first exposure to the Deaf world. Failure. Worry. Fast forward 5 months, and our daughter had grown healthily, and it was time for her open heart surgery to repair that toonie sized heart of hers. During this procedure we signed consent for audiology to perform an ABR test to see how her brain responded to sounds.
Blessing number one. Perspective.
The audiologist came to talk to us a few hours after our sweet baby girl had made her way into the PICU after her surgery. As my husband and I stood next to her, praising God for her life, the audiologist asked us to please have a seat. He explained what the ABR results were. That he was sorry to have to tell us, but our daughter was deaf. My husband turned to look at her cold, tube ridden body next to us and simply replied “OK”. In our minds, we were just happy to know she was alive! That’s what I mean about this being our first blessing. We had perspective. Being deaf did not seem like bad news next to open heart surgery. The audiologist was completely shocked at our reaction. He didn’t think we fully understood what he was saying and told us he would come back in a few days to chat to us again, once all this sunk in.
After a few months of recovery, and a major influx of therapies, we started on our road to “fix” her ears. All professionals seem to point us in the same direction – Cochlear Implant. We were thinking this was going to be a miracle, and our daughter would be more like us, and less like …. well … herself. (That comment is so far from trying to be offensive, it’s a thought that crossed my mind many times, and one that I pushed down because it was too hard to think about) We were uneducated as to what being Deaf meant, and we could only focus on the massive amounts of information being put in front of us. Who had to time find any MORE information with a 2 year old toddler and a medically fragile baby? Not this mom!
When our sweet girl turned 18 months old, we had major supports in place to help us get an Implant. We flew our family of 4 to Toronto, because that was where the best Cochlear Implant surgeon (who happen to be known for implanting kids with CHARGE syndrome, woohoo!) was located. We boarded the plane, thinking we would come home with some very exciting news.
Blessing number two. Rejection
The best of the best told us that he was not comfortable implanting our daughter. He felt the risk would outweigh the benefits and would not consider it again until she was at least 3 years of age.
Now, don’t let me fool you when I say this was blessing number two. I BAWLED. I was DEVASTATED. I was ANGRY. I was ready to FIGHT for this child to hear. I actually told the surgeon to expect us when she turned 3. We would be back and wouldn’t take no for an answer…. The blessing comes with the rejection and the healing that took place in the waiting.
The months to follow are quite hard for me to put into words. Being “in limbo” is the best I can do. That’s exactly what it felt like. I was determined that at 3, our girl would be implanted, but until then I needed help communicating with her. Of all the options given to us, we went with ASL. I had always been super interested in sign language, and we even tried a few baby signs with our son when he was born. So we thought we would go that route for the time being.
Blessing number three. Deaf community.
We were given a Deaf mentor to help our family learn sign language. He was going to come to our house and teach us as a unit! We were so excited, and extremely nervous. He was Deaf himself, and we didn’t know how on earth we were going to communicate with him. The first day he showed up to our door would change our lives forever. After almost 2 years of the medical model being our main source of information, we had a Deaf person right in front of us, not nervous a tiny bit to communicate with us, fully capable to provide for himself, able to contribute to society, able to show and receive love, able to…able to…able to….able to…. completely ABLE. There was no self-pity, no “woe is me”, but a happy man, working to teach families like mine because he had a genuine love and understanding for deaf children.
I grew to love this man and the time he spent at our house. I grew to love the teasing. Oh how he loved to tease me and my husband!! Over the next year he taught us tons, and we were able to quickly leave the paper and the pens aside and communicating in sign. Unfortunately his health deteriorated, and he sadly passed away. He will forever hold a place in our hearts. He was one of a kind, and a major influence in our family.
Blessing number four. Mentoring Part 2.
Not having our Deaf mentor meant we needed another Deaf mentor. A member of the Deaf community stepped up and started meeting us for signing lessons. This was another person as an example of how being Deaf does not hold you back…Successful Deaf woman right in front of me. Happy with her life. Loves her children. Loves her husband. Loves her grandchildren. Drives a nice vehicle. Has a great job. etc etc etc etc. I was starting to wonder why the medical field was so negative about DEAF. Hmm. Getting to know this woman, I knew I could ask her anything at all. She knew I was brand new to the Deaf community and I’m sure she could see I was confused/worried/scared/frustrated. I started to explore what being deaf was, what it meant. Funny, our daughter would have been about 4 by this time and I still wasn’t sure what being deaf meant or what it was? Let me elaborate on my confusion: We had all these goals in front of us that just seemed completely impossible for a deaf child. “She needs to drop the block in the bucket when she hears the sounds. She needs to practice the ling sounds, etc”. How would she know when to drop a block if she couldn’t hear the sound? How do you practice “listening” skills when you are deaf? I was too afraid to ask in fear I would look uneducated, or look like I wasn’t fully involved in my daughter’s medical needs.
Blessing number five. Audiology.
Having now established a great support system and team for our gal, it was time to make up my own mind. I was so tired of feeling confused. In limbo. I was always questioning myself, and trying to understand something that made absolutely no sense to me. My first step was going to be getting out of my comfort zone, pushing my pride aside, and scheduling an appointment with audiology, not for my deaf daughter, but for myself. I would ask my “stupid” questions and get it over with.
Best thing I ever did. BEST. THING. I. EVER. DID. Audiology explained that Allison was Deaf. Hearing aids were not making a difference. Her growth over the past few years was incredible and she was certainly capable of learning. If she wasn’t doing the block drop test, it was simply because she had no sound to pair it with. Simple as that. She explained that if we wanted to continue to try adjusting hearing aids we could, and that option is forever there. Or we can simply be done fighting the fight to keep that sucker (hearing aid) in there. Good-bye hearing aid, Hello language.
Blessing number six. ASL
We had been signing as a family since our daughter was about two years old. She was learning some signs and we were so proud! I wanted to bring the language to the next level, and that’s where our Deaf mentor, stepped in and provided a service to us at the daycare. She would visit daily and help grow our daughter’s vocabulary and help the EA learn too. AMAZING. This was where I first woke up to the real human need for language. I’m so sad this wasn’t in my brain before this. I mean, come on, we all know language is important, but something just clicked when I started seeing my daughter learn to tell me about her feelings, about her likes, her dislikes, her day… She wasn’t simply relying on smiles, yells or cries to get her needs known…She was elaborating!
This drove me to learn more about language. With learning ASL, I learned about the culture. I learned about the hundred year old argument between the hearing world and the Deaf world. Finally my confusion made sense!!! It was the most freeing feeling I ever felt. I was able to take a stand and decide where we were on that hundred year old battle. My daughter is Deaf. That is OK. She will be a successful woman who contributes to society. She will, she will, she will. There will be no “cant’s” in her life. I will fight for her right to language. And she will grow up knowing that there is nothing “wrong” with her. She will be proud and confident in her own skin.
Blessing number seven. No Implant
When she was almost 4, the surgeon called me out of the blue. He said based on the scans he received he would be very concerned about the facial nerve. He said if he were to go ahead with this, he would only give us a 50/50 chance that she would have facial paralysis. He then listed the next risk, then the next, then the next. I was in a better place. I was understanding that it wasn’t “wrong” to be Deaf. I kindly told him that I appreciated his input and that we would decline going ahead for the next steps….. silence….. He then told me he thinks I am a great mom. I didn’t need validation that I had made the right choice, but wow, that felt VERY nice!
I plan on elaborating greatly on many of these areas, and the struggles I have had/am having. I will offer my point of view, and my main goal here is to help educate the parents. So that if you face the challenges I have, you can be fully aware that there are options.
For the record (back to that hundred yearlong battle) I am not opposed to Cochlear Implants at all. I am opposed to how they are presented. One sided. Only option. No other way. Made to feel less of a parent if you “deny” the child of hearing.. I have only recently gained enough confidence that I do not allow others to judge our family. We are denying our daughter nothing. No implant, or yes implant. Language is the key.
As you can see, I feel extremely blessed! I hope to help other parents of deaf children feel like they are not alone. There is no limbo. There is more to life than hearing/not hearing. We are all human. We all have the same goals/wants/needs. We should be in this together.
My daughter is Deaf. That is ok.
Mom of a Deaf girl