For the first time in sharing our journey of Alivia-Ellen’s hearing loss and all the trials and tribulations that follow, came a feeling of reluctance.
When we was first faced with the diagnosis of progressive bilateral hearing loss for Alivia-Ellen, a tornado of feelings and emotions spiralled in a space of a minute. My brain was ticking faster and faster and there was no off button to pause for a second and think rationally. I skipped 20 years and imagined how her future could be affected, and dwelled upon that, she was only 10 days old.
In the thick of things, when we’re dealt a hand we never expected, never anticipated, never imagined in the 9 months of a blissful pregnancy. The feelings of receiving life changing news can be intense, stressful and overwhelming.
My armour and exterior provide my children with a strong Mother. In the waiting room of these appointments, there’s a mutual silence amongst the parents, gentle unaware hums from the children playing or colouring. The tick of the clock is almost in sync rhythm with the beating of my heart. 3 years into our journey I have mastered the fine art of withstanding my emotions and attend these appointments with no upset.
But beneath my confidence and positive exterior, I’m scared too.
‘Come what may.’
Recently we found out Alivia will be embarking onto her own adventure to London to discover her true diagnosis. Same as Mummy, from the age of 10 I was under the care of Great Ormand Street Hospital and Royal National Throat, Ear and Nose Hospital. My daughter is following my medical footsteps but for a wider range of reasons. I now feel ready to share with you all.
⁃ Progressive bilateral sensorineural hearing loss.
⁃ Alivia’s vision is worsening
⁃ Albinism proposed as a possible diagnosis.
⁃ Significant speech delay (non verbal)
⁃ Impacted bowels (constipation)
⁃ Bilateral divergent squint. (Turn to eye)
⁃ LADD Syndrome and Alport Syndrome proposed possibility.
During these appointments, what feels like your child is stripped of her identity and is now just a mystery medical examination.
All her features that I find make her the most beautiful little girl that she is, are now just part of a genetic flaw. From her flat button nose to the fair colour of her hair and brows. Her cute peggy toothed smile and wide feet with short stubby toes that I kissed individually at night from the moment she was born. From the way she stands and holds a pencil, are all listed and sent off for a genetic discussion.
During the process of these genetic appointments, which feel more nerve wrecking than waiting for your GCSE results in front of your parents, I am certain there is a process slightly like what I can only imagine a grieving process to be.
How we cope and feel before, during and after these appointments will be different for every parent. I tend to talk openly about these appointments to anyone willing to listen, no matter where I am if a thought appears I tend to blurt it out, it helps me process what happens and formulate acceptance. I allow myself time a day where I digest my thoughts and feelings surrounding medical appointments. Where as her Father absorbs and internalises his feelings. Coping looks different for everyone. And that’s ok too. All part of the acceptance of a diagnosis.