I mentioned previously that after Tahlita’s screening test which suggested that she had hearing loss, I had to book further tests in the nearest city for both the girls. Again, due to our distance away from the city, things weren’t simple! I managed to get an ABR/ASSR appointment for 2 weeks later; a process where Tahlita was going to be sedated using some oral medication, as having her anesthetized for the procedure, would mean another separate trip altogether just to see the ENT prior to reserving theatre time for the procedure. I was assured that this was done often and would be fine. At the same time we would take Hadassah for a screening OAE test (a much shorter and simpler screening test that also relies on the child being silent and still) to see if she perhaps also had hearing loss. It was a very long 2 weeks! I needed to know if my daughters could hear. In spite of many prayers that we would leave the audiologist’s rooms that day with a final conclusion (and even more prayers that the conclusion would be that they had normal hearing) the sedation failed, and so further testing that day, had to be aborted. They were going to need to be fully anesthetized in theatre. I was desperately disappointed as I was so anxious to know then and there! We made the long trip back home, our questions still unanswered, and spirits very low.
Our theatre booking was for 2 weeks later. Another painful wait. Finally the day came and at long last we were going to get answers. I accompanied both girls into theatre where the anesthetist received them and gassed them down. Tahlita was first. The theatre staff were all very friendly and chatty, my little girl was very brave as she lay on the theatre table. Once she was unconscious, I left to wait with Hadassah. After an hour, Hadassah was called, and again I accompanied her to theatre. This time the theatre staff were quiet. I got a few sympathetic looks, as I entered the theatre room where Tahlita had been just a few minutes before. I noticed a little specimen jar with 2 little yellow blobs that looked like ear impressions on the audiologist’s trolley. My heart sank. There must be a problem if she’s taken impressions! I returned to the waiting area. Our ENT came to see us, and with a big sigh, explained that Tahlita had significant sensorineural hearing loss. He said that he’d be back when Hadassah was finished to give us her results. Already devastated by the news about Tahlita and trying to hold myself together, an hour later the ENT entered our waiting room for the second time. I can’t remember much of the next few minutes as my world stopped spinning. Hadassah’s tests were the same as Tahlita’s. My babies were both deaf. He continued talking about cochlear implants, and our running out of time for language development; all too much information for that moment.
An appointment was set up for the next day to discuss the results with the audiologist. We left the hospital, morale at its ultimate low, the worst day of my life by far. Nothing else in life mattered as the future that I had envisaged for them was gone in an instant. Well, so I thought. Guilt was also a predominant feeling, that we hadn’t had them tested earlier. The next day in the audiologist’s office was the most surreal experience. We were told that they both had profound hearing loss in their right ears and moderate to severe loss in their left ears, and that Tahlita’s was a little worse than her sister’s, and there was a very real possibility that it could be progressive. We were asked what type of hearing aids we wanted and what colours we wanted to choose. Colours??? I didn’t want hearing aids at all! This was not happening to me! All very confused and still in a daze at the whole experience, we left for our last trip up the mountain to our rural home. We would have to move to the city to access care and resources for the girls, and we would have to do so urgently. On the same day, we made the decision to leave our friends, jobs that we loved and our first home as a family, for the unknown.
That next month of packing things up, was a time of feeling very alone and a time of very real grief. My daughters were essentially the only deaf people that I had ever really known. This was a world, that at the time, I did not want to be part of. And what would become of all my prior dreams and hopes for their lives? In another breath though, I was relieved to have a diagnosis; a reason for their delayed speech, and consequently something to work with.
I look back now, just over 4 months have passed from our first very dark days after diagnosis. I’m stunned by the change in my own heart. I can take no credit for that change, but am eternally grateful for the support and help that has crossed my path. I have learned a tremendous amount about being a relevant health professional. My encounter with grief regarding my own children has changed me from being the ordinary doctor that shies away from the cries of a grieving parent (not from a place of not caring, but rather a place of feeling awkwardly uncomfortable) to being drawn to it. Just a warm smile, or caring touch can melt the icy feeling of being alone. I am also filled with hope about our future. The other day I came across a saying that made me think, “Yep, that is what I’m counting on!” It read, “Before something great happens, everything falls apart.” I think that it’s the realization that I’m no longer in control of my life (of course I never really was, just liked to believe this illusion) that has allowed me to take two steps back and just watch. It has been quite an incredible view. I’ve seen the dark clouds of despair part to allow the warm rays of hope (and joy!) shine through. HOPE. What a beautiful word! A friend of mine put this up on Facebook; I think it sums it up just perfectly: “Hope expects what faith can see.”
I’ve also come across a fairly well known poem called “Welcome to Holland” by Emily Perl Kingsley. It basically uses the metaphor of planning a trip to Italy to explain what life with a child who has a disability is like. Essentially, you’ve been looking forward to this exciting trip to Italy; you’ve learned Italian in preparation and done a lot of research and preparation for this much anticipated holiday. Then when your plane lands, the steward says “Welcome to Holland”. Holland? But you didn’t want to be in Holland! You weren’t prepared for Holland! Everyone is talking about Italy! Yep, it’s exactly like Emily describes. And she goes on to encourage that Holland isn’t all that bad, that there are beautiful things to see in Holland and interesting people to meet. I can also testify, that in my short time in my “Holland”, the deaf world, I have met with greatness that I never knew existed, inspirational heroes have become my friends and I have seen the beauty and sincerity of the human spirit, that I may have missed amongst all the excitement of “Italy”.