MOMENTS OF JOY

by Jodi Anderson (Wisconsin)
May 2017

Our journey into the world of deafblindness is not typical, not that there is anything typical for anyone’s experience with this path. Unlike many others, we did not find out before Liam was born or even shortly after his birth that there would be issues with his vision and hearing. Liam was born after an uncomplicated pregnancy with typical hearing and vision (I would say normal, but one thing I have learned is that there is no such thing as normal—one of my favorite quotes is that normal is just a setting on your dryer, lol). That fact and our whole world changed shortly after Liam turned three.

One afternoon in November, Liam looked a little flushed, and after taking his temperature, we discovered he had a slight fever. After a dose of Tylenol, it came down, and I didn’t think much more about it. The next morning he woke up with cold-type symptoms—a stuffy nose and a small cough and still a low-grade fever. Liam had had colds before, so I was not fazed or worried at this point. As the day progressed, he seemed a little tired but still was a fairly active three-year-old, and the fever came down with doses of Tylenol. Thursday morning he woke up and threw up twice; time to call the doctor. The pediatrician reassured us that there was a virus going around that presented itself as a cold and then 24 hours of vomiting and then it was over and said to call back Friday if he was not better. We never made it to Friday. Thursday night Liam was quite lethargic and went to bed early. I checked on him every few hours and he was asleep, although very fitfully. Shortly before bed I checked on him one more time. Liam was oddly still. He looked grey and his eyes were open, but both eyes were pointing to the right. He was unresponsive. Instinct took over; I grabbed him and drove him to the ER myself. A whirlwind of activity followed: a CT showed brain swelling, he was intubated, he needed to be flighted to the children’s hospital an hour away, it was too foggy for the helicopter, we had to wait for the team to come up and transport him down, my husband was at home with my younger son, I had to call him with updates even though I was not sure what on earth was happening. Everything was a blur and yet was moving in slow motion all at once.

This comparison shows Liam a few days before he got sick and about two weeks into his stay in the ICU.

To make a long story short, Liam had bacterial meningitis, the worst kind of meningitis. The bacteria that can cause a simple ear infection for whatever reason set up camp in his brain. He had severe encephalitis, which is swelling and infection of the lining of the brain, and a stroke to the right frontal lobe area of his brain. We were lucky. We were lucky because Liam survived and most kids in his position do not. We spent two months in the hospital. Liam almost died twice. We signed organ donation paperwork. But he survived. Liam’s MRI showed global brain damage; the affected areas were scattered throughout his brain like Swiss cheese. The occipital lobe is the back part of the brain that is involved with vision, and Liam had significant damage there, so we knew his vision would be affected, but we had no idea to what degree. In the early days, most of our efforts were focused on stroke rehab—working on teaching Liam to sit up by himself, adapting to G-tube feedings, learning how to care for our son.

Liam did not respond much to us. We assumed he was pretty severely affected cognitively by his illness. We saw an eye specialist to learn what kind of vision issues we were dealing with so we could better plan strategies to help Liam. It was a pretty big blow to find out Liam was totally blind, not even any type of light perception whatsoever. But we persevered. Having a blind child is not the end of the world. We contacted our state’s vision outreach staff to come and evaluate Liam and assist us with therapies. The specialist asked about his hearing. My husband and I looked at each other blankly. No one had ever mentioned anything to us about his hearing being possibly affected by his meningitis. Five months after Liam was discharged from the hospital, we had him put under for an ABR and other tests to determine if he had any hearing deficits. I was in no way prepared for the news we received that day. I distinctly remember the audiologist coming out to talk to us after the procedure and her body language. You could just tell she did not want to have our conversation. Liam had a profound hearing loss in both ears. I just sat there in shock. What did that mean? Liam was deaf. He could not hear a thing. My first thought: Liam isn’t severely cognitively impaired; HE CAN’T HEAR US! And then it really hit me. Liam is totally blind and totally deaf. What?

I drove home bawling. I honestly do not remember how I got us home that day, which is scary. I spent a few days feeling so blown away and sorry for myself. I did not know anyone who was blind. I did not know anyone who was deaf. Both? How are we going to do this? Can we do this? Well, I channeled that fear and frustration into action. There was something I could do; I could educate myself and research to learn as much as I could and find resources to help us. I found our state deaf-blind project and made such important connections and learned so much. We had the opportunity to have Liam evaluated by Dr. Jan van Dijk in our home. We got Liam a cochlear implant on his right side (his left side had ossified due to the meningitis, so we could not implant it). I learned all I could about Liam’s medical conditions because knowledge is power. I also vowed never to go into a situation not knowing all I could and what the worst possible outcome could be. I do not ever want to be caught off guard like I was when we found out Liam was deaf. I do not think of it as pessimism; I need to protect my heart.

Liam is now a happy ten-year-old. His CI is working wonderfully, and we have kept in contact with Dr. van Dijk, who is impressed with Liam’s progress. Dr. van Dijk believes that one reason we have had such success is that Liam had language before he got sick, so his brain was wired for language. Liam receives information through his CI, tactile sign language, and braille. Expressive communication is a bit more of a challenge for Liam. He uses sign, which can be difficult for others to understand because he doesn’t have much dexterity in the fingers of his left hand due to his stroke. He tries to make sounds and can say a few words, but again, the stroke really interferes with his ability to articulate, and for the most part he is nonverbal. We are in the process of introducing a communication device. He does have some cognitive delays but nothing as severe as we once thought. And Liam LOVES music! He has really good rhythm and can keep a beat and dances with such joy!

Throughout this whole journey, I have learned a few things. First, there are only 24 hours in a day. I am one of those people who found so much information and so many strategies to try that I wanted to go home and do everything at once! I tried to do too much too soon, so it felt like nothing worked. It takes time to see if something works, so my advice is to focus on one or two things and master those before moving on to something new. It takes our kids longer to learn things than their typically developing peers, so we need to work on their time, not ours. Next, sometimes things can work one place but not another. Liam is very situational. An example of this is his calendar system. He has a pretty good system at school that works well, but I could never duplicate it at home, and I felt terrible about it! It took me awhile to realize that at home a slightly different system worked better for Liam, and once I figured it out, all was well in the world. It helps to be flexible and open to adapting things from one place to another as your child’s needs change. Another important thing I learned is that you need to be kind to yourself. You do not know what you don’t know. I really felt like we wasted those five months before Liam was diagnosed with his hearing loss. I kept thinking that maybe we could have started things earlier and be making better progress. You cannot change what has happened. We did not know to have his hearing tested, and feeling guilty does no one any good, especially Liam. Finally, networking with other parents is vital. They are your best source of information, inspiration, and support. We were blessed to find other families who were willing to share themselves with us and taught us so much early in our journey. Parents often feel isolated, uncertain, or overwhelmed until they meet other parents sharing a similar journey.

The most important thing throughout this whole experience was taught to me by Dr. van Dijk and my son. During a talk, Dr. van Dijk asked what quality of life was. Several people raised their hands and gave some long-winded answers, to which he responded with an emphatic “no”! Quality of life can be summed up in three words: moments of joy. Every day I look and find those moments of joy. Some days they can be more difficult to find, but they are there if you look hard enough for them.