Evening All,
This along with a lot of the others has been a hard one. I have written and rewritten it so many times in my head. Not wanting any one to be offended by what I might say. Something like this is a personal journey and everyone feels differently about comments and situations.
We decided only to tell immediate family that Eli was having hearing tests in the beginning because we didn't have any answers and knew people would have questions. We had loads and it took a while to understand the answers to a lot of these questions for us.
So when you tell people your son is deaf you don't really know what you want them to say. If someone was telling me that, I don't know what would be the right thing to say to them. But saying something can make a difference. Letting that person know you're there for a chat if they need it and really meaning it is the best comment I think. For us there's no other deafness in the family so it was a shock to us and everyone else. We have had to help educate people along the way as well as educate ourselves. Luckily I love a good Google.
Most people tried to be supportive but I have lost some friends since because I needed a support network and they weren't there. Be it because they didn't know what to say to me, wasn't fussed or had other things going on I don't know. At the time I'm not going to lie it hurt and I felt really alone at times. I will do a post on my anxiety since Eli. Now I don't have resentment and sometimes friendships end. Thats part of life even if it does hurt.
I think the comment that always frustrated me the most then and still now is "it could be worse". Now I understand that it comes from a good place in there mind but honestly that's not helpful at all. Deafness isn't the end of Eli's life but for new parents navigating this new world it is scary because it is so unknown. I guess it could be worse in lots of ways but honestly not having hearing in a hearing world is still a struggle in this day and age. There is still so much unknown and the fact is Eli's life will always be a little harder then Mason's. Right now we don't know how much harder but as a mum with anxiety you don't and can't just think about the right now. This comment doesn't seem to bother Luke like it does me. In the beginning I actually felt really angry if someone said that to me. It's not a competition and shouldn't matter how big or small a disability or difference is.
Like I say though most people were polite and sent there well wishes. We had some lovely stories of people that knew someone else who had hearing aids. We had a few people who questioned if Eli would grow out of it. A question we had asked ourselves in the beginning. This is why we needed to know the information ourselves beforehand.
We announced on social media because it is the easiest way to get to everyone. It's how we have announced anything major since social media became so big. We had a build a bear with hearing aids on to match Eli. I love a good photo session with the boys so any excuse and I will take it. They will have a lot of embarrassing pictures for there 18th birthday. Looking at the picture now makes me smile because the hearing aids are upside down on the bear. This was how little we knew. But it was a big milestone for Eli and I love to celebrate and share the boys milestones.
How did people react when you told them? What did you want people to say?
As always thank you for reading
Jane
XxX
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