Looking UP – day #365

A few short words, neatly recorded on the pale blue lines of a college exercise book, stare back at me as I glance over to my “September 2013” entries. These words represent the start of our intervention with my girls, and I’d carefully jot them down and add to the list, any changes or new words, every few days. These are our little ‘language record books’, there’s one for each of them- each a little different from the other. The 3rd soft-covered book had joined the pile a couple of months after the first two. As I’m typing this, I’m glancing back and forth to Tahlita’s first page, admiring my extremely neat hand writing. Every word that she was using was so precious to me, and the way that I’ve recorded them is evidence of that. I haven’t been as conscientious over the past few months as I was initially, in keeping track of all new words, phrases or signs, as simply, over the last 10 months now, the pace has been so rapid that I often lose track of the specifics and details.

This next week marks one year since the discovery that the twins are deaf. One year ago, I was probably analyzing the day’s events and having moments lower than words can describe as I recalled something that made me ‘see’ their hearing loss, and then holding onto moments when I had thought they had responded to sound, just to numb the sting of the fear and uncertainty which consumed my every thought at that time. I had our ABR/ASSRs booked, and felt the confusing combination of wanting to press the ‘pause’ and ‘fast forward’ buttons on my life simultaneously. I wanted to pause the ‘now’…prevent having to deal with the biggest challenge that I’d face thus far, and yet was absolutely desperate to know the state of my girls’ hearing, that every last day of waiting, was excruciating. One year ago today, I honestly did not expect Hadassah to be deaf, and the thought of Eden having hearing loss, hadn’t yet crossed my mind. Had someone mentioned the possibility of all 3 being deaf and the probability of it being a progressive process, I possibly would have needed some form of inpatient mental stabilization. This was only 12 months ago.

So much has happened since then, that in some ways it feels like a life time ago. Our home is completely different, our careers have done a 180 degree turn, 6 pink hearing aids have become part of my daily routine, I could find my way to our audiologist’s rooms blind folded, have consumed copious amounts of frozen yoghurt (as this is always the after therapy treat for all of us) and have new people in my life who I love and treasure – I hadn’t yet met them 12 months ago. Last July my little notes and reminders stuck up around the house, were of antiretroviral drugs and their resistance patterns, as I studied diligently for upcoming diploma exams. Now, I glance around my home and find most things (including the toilet) labeled with big letters on note cards…efforts at growing literacy in my girls – evidence of intervention. From a few lines of single words (mostly nouns) which started each of my little record books, I now have 3 happy, perfect and beautiful little girls who chat, sign, gesture and attempt to cue.  We’re currently exploring metamorphosis and looking at differences between animals like mammals and reptiles – quite a jump from a small group of simple nouns. We communicate, and that gift that I’ve received over the period of 12 months, is one that is truly priceless. Oh, things are not perfect! But there is significant change. I’m changed! From being terrified of the “d” word to viewing deafness as now something familiar… something almost comforting in its familiarity.

I look ahead at the journey that continues before me, it’s still a significant up hill, but the view so far is pleasant. I glance back and realize we’ve made some very real mileage. The gradient we’ve climbed has been steep – so steep at times that I’ve literally needed a hand to pull me up to the next step. Those hands have been God-given people along the way, messages of encouragement, words of life and hope, moments of celebration as we saw growth in each of our princesses and without doubt, the invaluable role of intervention. I am so grateful for the support, tolerance, patience, expertise, love and great ideas provided by our intervention team, and cannot imagine having ever gotten past, even the first few steps of this journey, without them. Consequently, Graeme and I desire to see other families in our country be offered the same intervention services and support. Co-incidentally, this week is also the week that Graeme climbs Mt Kilimanjaro for deaf babies…to raise awareness and also funds for HI HOPES, the intervention programme that has given us the tools we needed to make a positive, hopeful start in our journey. It’s not too late to support this climb… visit http://www.doit4charity.co.za/Graeme.Birdsey.

One year ago, we were a family with set goals and dreams who stared at the terrifying possibility of deafness ruining those dreams. Twelve months later, we are a deaf family with hearing members, lives coloured with hope, joy and communication, recognizing deafness as a friend, not a foe, and wanting to pass that hope onto others. I saw a cute quote the other day that said, “Sometimes you have to climb a mountain to get there.” The goal for the “mountain of greatness” as Kilimanjaro aptly means, is an obvious one. The “there”, however, in my journey of mothering my 3 deaf princesses, is more about the journey itself, a journey of lots of little goals, some bigger goals, figuring out what works and what doesn’t for each of them, growing closer relationally, getting better in communicating and seeing them have opportunities equal to that of their hearing peers and living the lives that they were created for. Whether ‘Kili’ or life challenges, let’s just put one foot in front of the other, keep our gaze Up and take one day at a time, whilst helping others do the same.

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