This week provided me with an opportunity to see just how we have come in the 12 years since A lost his hearing after battling meningitis as a 2 year old. Perhaps more accurately how far I personally have come.
As part of trying to help parents, our parent group is reaching out to parents at that time of diagnosis to support them in a way that can only be done by another parent who has been there.
The implementation of screening of the hearing of newborn babies is a great thing. The sooner their hearing loss is identified, the sooner decisions can be made with regard to hearing aids and method or methods of communication to be used with the child. However it seems to me that is also very much a double edged sword. How difficult is it to be the mother of a newborn baby being so unsure of yourself and what to do and questioning whether in fact you can even do it right? Add to this then the news that your child has a hearing loss! In the majority of cases children born with a hearing loss are in fact the children born of hearing parents, parents who by and large have had no exposure to deafness before the birth of their own child.
This week saw me call a parent to see how she was going. Her child was diagnosed as a newborn and she had struggled with that diagnosis. In what seems to be the true characteristic of motherhood she had agonised over what she had done differently in this pregnancy compared to her first, what had she done differently this time "to make her child deaf". Despite the fact it had been some months since that diagnosis, her voice cracked and I could feel her silent tears as she tried to hold it together for my benefit during our call. I tried to reassure that she had done nothing wrong, these things just happen.
As someone who is so much further down this road, it was a real point of perspective to be able to hear her pain and whilst really empathising with her, equally not be swamped by that wave emotion but rather be that shoulder for her to unburden on. I shared with her that it was ok for her to grieve. That is not in anyway to suggest that her child was less than perfect because of his deafness but rather grieve for her plans for her future, she hadn't planned to parent a deaf child. As a hearing person with no prior knowledge of deafness, she sees her son's loss of hearing as a loss and so feels a great sadness at his loss. It wasn't part of her plans for her future or his that she would find herself answering questions from other kids in the playground about hearing aids and what they were for. This notion of grief and the need to allow yourself to feel it, is touched on in that wonderful piece "Welcome to Holland".
Perhaps what struck me most were her assertions that she just wasn't a strong person. I tried to share with her that most of us weren't until faced with raising a child with a hearing loss. It is not that we suddenly had our hearts turned to stone in a sea of bitterness that made us go out into the world strong bitches that would fight the world as soon as look at it. Quite the opposite in fact!
We started this journey but one step at a time. We looked at each decision we had to make by gathering as much information as we could and making our best shot at an informed decision for our kids. Not all of them were going to be right and we might change our minds along the way but none the less they were made with love for our beautiful kids. Around us we found the most amazing support - from caring professionals, from other parents of deaf kids, from our partners, our families, our friends. It didn't make that grief any less, it just helped us gain some perspective.
With each decision we made, or hurdled we climbed over, we grew from the inside out. We took back control and we made it our part in life to support our kids in the best way that we could and that we would be our kid's advocates, for despite the best intentions of the professionals entrusted with the care of kids, they were not necessarily going to be there for the long haul, we as their parents sure were.
For many of us the journey made our hearts softer, more open to the suffering of others. We have become greater champions of social justice, either just in deafness or even in the wider field of special needs. Many too feel a strong sense of the need to give back to others who find themselves where we have walked before them.
My call with this parent, brought back many memories about what an awful place it was that she was in right now. The place of darkness, guilt, fear of the unknown and mostly fear for the future. Oh she loved her son, just as much today as she did on the day he was born, but what she needed to know most was "would he be ok?" Her head had filled with fears about him being teased at school for his hearing aids, or what if his speech wasn't normal, would people tease him, what if he never found a partner, got married?
From my point of perspective 12 years further down the track, it was my privilege to hold out that warm glowing light at the end of the tunnel. Despite her fears for herself and her son, they were both going to be alright. They were both going to grow and learn from this experience and her son was going to be ok. It wasn't going to be an easy, quick fix - no matter what choices they made for him in the future, it was going to require a commitment from them to support their son, but it was a commitment in which they were not alone - there were so many people there to offer them a hand, to help them up on the tough days, to share the greatest of joys on the good days.
I am going to call her again in a short while to touch base and see how she is doing. The thing is right now she doesn't really have a clue of just how strong she is and what she is capable of doing. She has no idea how this experience will change her and her perception of herself and what she can do. So how am I so sure that she will experience and be all these things - because I have also walked that path before too. I have walked the path from fear of the unknown to a quiet strength and resilience in the knowledge that we did make it through the tough times and have come out the other side, not only stronger but much much better human beings, with a real sense of commitment to humanity and supporting all its members.