Profoundly Happy

There is a word that has been bouncing around in my head for two weeks now... "Profound". It's not like I haven't heard it before, but the context in which it was used recently was probably the hardest thing I've ever heard in my life, and I have been desperately trying since then to wrap my mind and my heart around the significance of it all.

Monday, March 19th was our first wedding anniversary. It has been a whirlwind of a first year for Rob and I. We got married in March, bought a new house in April, I started a new job in May, and we found out in June that I was pregnant. We have had so many blessings come our way, but I would be a liar if I said there weren't challenges as well. Rob has never had children before now, and I can only try to understand how overwhelming it must be to get three at once, plus an infant in under 12 months. I had been a single mom for a long time, and I have been very used to doing things my way, when I want and how I want. The learning curve has been steep, and we're trying to muddle our way through as best as we can. Fortunately, I kinda like the guy, and I'm pretty sure he likes me too. Our love and our family is a work in progress. When things don't go perfectly, we can always say, "We'll try again tomorrow."

Monday March 19th, I had also scheduled a follow up hearing test for our new baby boy, Calvin. He had not passed the previous two that were administered in the hospital when he was born. I had a lot of mixed feelings about it; but mostly I believed it wouldn't be a big deal. His doctor had reassured me that many babies do not pass their first screenings, primarily because our hearing isn't completely developed at birth. He did mention that because of my husband's hearing loss, we were at a higher risk for Calvin having some hearing loss; but it still didn't register to me that it was a possibility. I don't think I wanted it to register. Calvin was not responding to my voice like a 6 week old baby should. He had never been startled by loud noises at all. Turning on the lights was more likely to wake him up than anyone yelling was. In spite of knowing all of this, I desperately hung on to the idea that he was "probably fine".

When we met with the audiologist at the Elk's Hearing and Balance Clinic, something about the way she interacted with me raised my awareness a little. She wasn't dismissing anything. She didn't give me the "probably fine" mantra that everyone else had said. She had seen his two previous test results, and I am certain that she was more aware of what the outcome would be than I could have predicted.

Calvin needed to be asleep for the testing, so while she hooked electrodes up to his head and behind his ear, I fed him and prayed silently. This was suddenly so real to me and I wasn't ready yet. I wanted to cancel the appointment and come back later now that I was no longer in denial.

When Calvin was far enough asleep, the audiologist came back into the room and started the testing. For the entire duration of the three tests, I tried so hard to make eye contact with her, to get some sign of reassurance, but I could not see her face and maybe that was a good thing. Rob was able to see the profile of  her face, and later he commented that as the test progressed, her countenance changed dramatically.

The time came for her to give us the results, and when she walked in the room, I think I was almost willing her to say, "Ok, Calvin looks great! You're good to go now." Instead, she sat down across from me, and very calmly said, "After reviewing the results, the tests would indicate that there is no presence of hearing in either ear for Calvin. Because of this, we would diagnose him as profoundly deaf".

Rob's eyes widened and he said, "When you say no hearing, does that mean he can hear nothing?"
"Nothing." She responded.

I think my soul sank at that moment. It wasn't my heart that sank, that felt like it was on fire. There was pure panic in my chest. I couldn't even see straight, and I was blinded by my tears. They were hot and they hurt. I had never been so afraid in my life. I don't know why my first reaction was fear, but it was. I looked at Rob as his head fell against the wall and tears streamed down his face. He was crushed.

"He can't hear anything? " I asked. I had to make sure I understood her correctly.
"No" she said.
"Not even my voice?"
"No" She said again. "But he can feel you when you talk, so please keep talking to him."

The rest of the appointment was kind of a blur. She laid out the advances that have been made for the hearing impaired, and gave us hope that at a year old, Calvin will be a candidate for a cochlear implant. Until then, he will wear hearing aids. We don't know yet how much, if at all, this will help him hear. More than likely, the hearing aids will only stimulate his nerves and prevent them from atrophying. She told us that she was referring us to an Otolaryngologist and that he would be fitted for his first pair of hearing aids in two weeks. I didn't even know that they made hearing aids that small.

We left the clinic and I called my sister. She cried and grieved with me and for that I'm thankful. Right at that moment I didn't want or need to hear that it was going to be OK, because I had no proof that it would be. I needed to just cry, and she let me.

We went home and told the kids, and grieved together as a family. We tried as best as we could to help the kids visualize what the rest of their baby brother's life would be like. The more they know, the more comforted they'll be. We explained that although he can't hear us, he can feel us, and that we needed to keep talking to him and to make sure that he knew we loved him.

I went to bed that night feeling more inadequate as a mother than I had ever felt in my life. Just before his 15th birthday, my oldest son, Aaron, was diagnosed with Asperger's syndrome. My second son Zack struggles with a mood disorder, and now my infant son is deaf. It took a lot of effort to not wonder, "why me?" or "what more could one mother be asked to endure in one life?"

The very next day poor Calvin was hospitalized for cellulitis on his face. It's a nasty bacterial infection that can be very dangerous for infants. In order to be sure that the infection had not spread to his spinal fluid, which would cause meningitis, a spinal tap was necessary. I wish I had been strong enough to be in the room while the doctors performed the spinal tap, but I wasn't. I will forever be grateful that my husband was though. I came in the room just as they were pulling the needle out of my baby's little back and that was enough.

Late that night, Calvin was crying like I had never heard him cry. He's not a fussy baby, and I can usually soothe him pretty easily. But this night he was in pain and I could tell. Nothing I was doing could calm him. It's moments like this that his deafness is so completely unfair. My baby was in pain, and he couldn't even hear me sing to him.  I started to cry and pray. I don't even know what I was praying for really, but soon enough it was as if someone was standing next to me and I heard,"Put your lips on his cheek next to his ear and hum." I did, and he stopped crying. By the light of one of the monitors that he was hooked up to, I could see the look on his face and it was so peaceful. I felt that peace too, and was finally not afraid anymore. I know now that as a mother, I am able to receive the inspiration I need to raise my children to be healthy and strong.

Two days later we were able to take Calvin home. I have no doubt that this was the result of so many prayers on our behalf. We are nothing if not blessed with wonderful families and friends.
That night while I was feeding him, I looked down at him and when we made eye contact, he smiled his first big, wide grin. His eyes lit up and milk ran down his chin and all over me. I honestly felt like he was trying to tell me, "I'm O.K. Mom!", and that was the moment  I realized something so profound that it changed the way I will think about my son forever. He doesn't have to hear to be happy.

I realize now that I can feel sorry for myself, get angry with God or mope around but that's not going to help Calvin... or any of us. He is entitled to the fullest life imaginable, and I am fortunate enough to be his mom. Seeing someone smile or laugh will teach him more than anything else that I can think of. What he can't hear with words, I can make up for in smiles and hugs and kisses.

I know that I am not left alone to struggle my way through this life, nor are my children. I have certainly come full circle with my faith and I can honestly say that I am loved infinitely more than I can understand and certainly more than I believe I deserve.

I also know that sometimes we are prepared for what we will face later in life, even if we are completely oblivious to it. When I was growing up in Idaho Falls, the ward that I attended was the regional deaf ward. Deaf families from all over southern Idaho would come to our ward every Sunday, even if it was a long distance to travel. I think the one thing that I loved the most about church as a child was the interpreters in our ward. They made every word that was spoken come alive. The music was more beautiful when there was action with the lyrics and I was never bored when I was watching them. I loved the people that I knew who were deaf, and I remember always having a special feeling of reverence and awe for them.

I did not know then that by attending church with so many families who were affected by hearing loss I was being prepared to be Calvin's mother and Rob's wife. I'm also certain that Rob didn't know that by being deaf he was being prepared to raise a child who is deaf.  He can completely understand the frustration that Calvin is sure to experience, far more than anyone else could. He can teach and guide his son in ways that I cannot. I am so thankful that I have a wonderful husband who is an example of how to be a good man to not only Calvin but Aaron and Zack. Rob has never felt sorry for himself or used his disability as an excuse, and I know he will teach my sons the same.

Rob and I have decided to start this blog in response to the question that so many family members and friends who have asked, "What can I do to help?"

 Calvin will be fitted for his hearing aids this week, and we pray that eventually he will be eligible for a cochlear implant. In the mean time, we will need to learn to communicate with him, so we as a family have decided to learn American Sign Language. We will also be posting weekly videos of what we learn so that those of you who choose to can learn along with us. Learning to communicate not only with my son, but anyone else who deals with hearing loss is the greatest gift anyone could give my family right now.  I would love to post what my kids have learned this week, but I didn't put any restraints on what words they searched. Aaron knows the sign for "bacon" and "bomb", and Zack learned "bull crap" and "zebra".  Next week will be more structured, I promise.

Fortunately, I have been in touch with a very supportive friend who also has a child with hearing loss. She reassured me that the emotional drain of this will ease and that things will come to a new normal. I've also reconnected with a family friend who is an educator for deaf children and she has been a wonderful resource and given me a very clear road map to help navigate the services available and interventions needed. Some other dear friends bought our first set of sign language DVD's for us. We are blessed in deed to have the friends and family that we do.

We all come into this life and do the best that we can for better or worse with what we've been given. We all create an identity for ourselves by the way we live and the way we love. I can look at my son and think, "profoundly deaf" or I can look at him and think, "profoundly happy". I choose the latter, and will do my best to help him smile every day.