Living with Heti’s Disability

From the first moment you see that + sign on the pregnancy test, you start to plan and look forward to the next 40 weeks of pregnancy; you look forward to buying baby clothes and picking out the best pram; you look forward to choosing, and arguing, with your husband about the name and decorating the nursery.

Of course, every prospective parent will be apprehensive about the 20-week scan, but after you get the thumbs up from the radiographer, you continue to dream about your little bundle of joy and look forward to the next 20 weeks of pregnancy and beyond.

So, it came as a huge shock for us to discover, through the new born hearing screening system, that our perfect little girl, Heti, was deaf.

This was almost 8 years ago and, looking back, it’s hard to believe that we navigated through those dark days at the beginning and came out the other end, smiling.

The first weeks and months following Heti’s birth was a blur of shock, disappointment and what seemed like hundreds of hospital appointments and endless tears. After days of testing we discovered that Heti was completely deaf – she had no nerves connecting her ears to her brain. She would never hear anything.

I recall sitting in the small sound proof room in the hospital listening to the doctor’s diagnosis and thinking ‘What? Not me? No? Not our perfect little baby? ​​ How on earth are we going to teach her how to communicate? It’s like asking someone to speak Italian with their child without understanding a word of the language. But we had to learn – and fast!

When you discover for the first time that your baby has a disability, everything seems to be literally falling down around you. Although it’s a bit of a cliché, I really felt that I was losing control of everything. Everyone around you tells you that they understand how you feel, when all you feel like doing is shouting in their faces as they really DON’T know how you feel!

I think I cried every single day for the first 6 months – sometimes in front of my husband Rhys or Mum or with a friend, sometimes in public when I caught myself enjoying music on the radio and realized that Heti couldn’t hear it, and sometimes quietly at home, on my own.

Heti had an ABI implant (Auditory Brainstem Implant) when she was 2 years old, at Manchester children’s hospital, and now she can hear a little and can also talk a little and communicate with us. She will always be dependent on sign language but I consider it a miracle that she can actually hear something.

Heti and her big brother Gruff.

Looking back at the past 8 years, I’m not too sure how we’ve came through it. One thing that’s certain, the help of family and friends was extremely important and if I were giving advice to another mother in the same situation, this is what I would say:

Take all the help offered to you – it’s enough to deal with having a new born baby and a 3-year-old child without having to deal with the fact that your baby has a disability.

If you want to cry, then cry. Don’t be afraid to cry – let it all out. You will definitely feel better!

Take someone else with you when you go to see a specialist – so much information is thrown at you about your child’s condition, it’s good to have someone else there to remember those little details.

Ask that stupid question – they are talking about your child and it’s important that you understand everything.

Be prepared for other people’s questions – especially children and old people from my experience! They usually ask as they are genuinely interested or concerned for you and your child – take the time to explain – it’s difficult at the beginning, but it becomes easier, I promise.

If you have other children, don’t feel guilty that you don’t have as much time for them – they’ll be fine.

But also remember to explain things to them – it’s hard but they’ll appreciate it.

Try not to get angry when you hear other mums complain because their child doesn’t sleep / is ill and so on. That’s their little world and they don’t intentionally want to upset you! I have had to bite my tongue countless times when a friend complains about something that’s wrong with their child – something that seems irrelevant to you as you have so much more to deal with. Bite your tongue and forget about it.

Finally, the most important thing in my opinion – enjoy your child. Whatever your child’s disability, remember they are a baby / child – YOUR little baby. Your beautiful little perfect baby, and enjoy every moment because time really does fly.

Heti is now 8 years old and is simply wonderful. Her sign skills are improving as is her spoken language and she’s full of life – she’s plays netball and swims, we go on skiing holidays and she loves going to cookery lessons – just like all other 8-year-old girls. I admit that she may not have the same freedom as her brother had when he was to her age, because I am a bit more protective of her, but life is really great.

Yes, she has a disability and she will always be profoundly deaf – and yes, I do worry about her future – where will she attend secondary school, what kind of job will she have, what about friends etc. – BUT –  we have a beautiful, loving, determined little girl and we wouldn’t change her, or the last 8 years, for the world.

I am convinced that I am a better parent because of this experience.

By Elin Williams.

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