“You can’t put an old head on young shoulders”. Ain’t that the truth?
There are so many instances in my life where I can recall things that I said or did, and now wish that I hadn’t. Looking back isn’t always a warm, nostalgic thing. This week, my mind has been flitting with memories. It was on this week two years ago that we received a second hearing loss diagnosis – this time for our son, Lewis. His older sister had received a similar diagnosis just eighteen months prior to that. And this week, we joyfully received the news that our youngest child seems to have no hearing problems! So, as I’ve rejoiced in the good news for Eliot, it’s come with the bittersweet reminiscence of unhappier times.
I wanted to process some of the valuable lessons that I’ve now learnt through the past four years of parenting a child/ren with hearing loss, and writing is a great way for me to get those ideas out of my head. My younger shoulders didn’t know ….
Hearing aids do not make your child behave as a hearing child would.
My children were not aided from birth (2 years and 19 months respectively) and a hearing aid is not a magic fix. They are incredible things, and have worked wonders for my children’s ability to access sound, but a child with hearing loss is always a child with hearing loss, even when they have a hearing aid or cochlear implant. The way they experience sound is fundamentally different to a normal hearing person and hearing does not equal listening. It can be extremely difficult for kids with hearing loss to process sound, to respond to it, to modulate it. Their brains are flat-out wired differently. We do everything we can to help them, to re-train the brain, to provide support and expect great things, but to expect my children to behave like a hearing child would is going to damage our relationship, because I’m asking something of them that isn’t possible.
There is a grief process that accompanies diagnosis. You need to undertake this.
It took me some time to recognise that the difficulties that I was coping with on a day-to-day basis were not just typical mum stuff. They were symptoms of the grief that I was feeling. Grief is sneaky: it manifests in some very ordinary and seemingly unrelated ways. It can mess with your ability to see joy in the sweet moments. It can make you yell. It can sow seeds of isolation in your head (“No one else could possibly understand what this is like.”) It will undermine your life and if you bury it, it will just be buried alive and then go on to sprout some very nasty things. I actually went to a counsellor and accessed some therapy to help me understand and unpack some of the grief associated with this new type of family to what I had envisioned for myself. It was helpful.
It’s worse at the beginning.
Like I said, there was a grief process for me. But these days, I give a lot less thought or energy into how hearing loss impacts on my kids or on me. It really has gotten a lot easier, even though nothing has changed in terms of their hearing loss. My children cope a lot better with the challenges and this is now very normal for us. I’ve learnt techniques and tricks that are now second nature (I wouldn’t never think to call to my kids from another room now — it’s just normal to go and locate them and speak where they can see me). Seeing hearing aids on their tiny ears was incredibly confronting at first and now I don’t notice them.
You’ll need to work harder at things that other families take for granted but this is a gift.
I am not sorry for the hours of speech therapy, the countless trips to audiologists and paediatricians, the constant call to be reading and playing with my children in meaningful ways. At times, these things have felt like burdens; taking all of the kids up to the hospital for routine checks is tiresome! But ultimately, when I look at my children and hear them speak and watch them play and see all of the beautiful gains that they’ve made, I am so thankful for the challenge. I am grateful that God has stretched us and humbled me and asked more from me than I thought I had. I have had to work harder and we may never achieve the same things as other families who don’t have these challenges, but I know that my being made weak has resulted in a reliance on God that my prideful self would not have had otherwise. The things that make us lean heavily on a good Father are ultimately gifts, and not burdens.
Defining yourself or your children by a diagnosis will limit you.
I was so scared of all the things that I felt my kids wouldn’t be able to do, or would struggle with. But one of the reasons that we don’t call our children “deaf” is because we feel that deafness is not who they are. It’s something they have, it’s an aspect of their lives. It is not their identity. My kids have tackled things that I was uncertain of, and done it wonderfully. No one is served by me shielding them from the world, or feeling that I need to “save” them from difficult circumstances. They can, and do, rise to the challenge and it’s my joy to watch them thrive.
This week, I asked myself, “Is it unwise to rejoice in perfect ears on one child, when two of our children don’t have them? What message am I sending them?” There are no easy answers for parents who seek wisdom. I have done many things poorly, but my children have done so many things well, and I follow a perfect Saviour whose grace is always enough. I will continue to make mistakes. Right now, I’m just thankful for this experience and for the ways that God’s grace is shaping my life. He’s been so kind to me and I lack no good thing.