Erin is 5. She has always been loud, bubbly, cheeky…..a fab little girl. We never saw the signs of her having trouble with her hearing. She never complained of her ears being sore, she would never be picking or prodding them. She would often ask questions again but Erin being the cheeky little girl she is, we presumed she was messing about. Having been told this week she is practically deaf has really come as a devastating blow. I remember when we were told Lauren had Cerebral Palsy, I was shell shocked, it feels the same this time round. Within the space of a couple of months she has gone from being vibrant and happy to withdrawn, teary and frustrated. “Mum, my ears won’t let me hear” How do you answer such a question?? The Truth is at the time I couldn’t. Even though we have been told she will need hearing aids, and technology is fabulous today, it still doesn’t take away the fact that my little girl has hearing damage and will affect her all her life. With all the kids having different health needs with FACSSYNDROME, you may think we are used to different diagnosis and it should get easier, but it doesn’t. If anything it’s getting harder. At the moment we are waiting to be seen by audiologist to have her fitted for her aids, so in the meantime, we are having to talk louder and directly to her face. This has also impacted on her pronouncing words. As she can hardly hear, some of the words she’s hearing she is saying wrong ie Lauren…. she says “Rauren” . Using sign language is helpful. I’ve never done this course before, but for simple things like “cup” “food” “tired” it is helping slightly, so it will be looking like maybe sign language is the way forward too.
Yesterday I was at the hospital with Lauren, and just the same as last week, yet again I’m feeling devastated. We were told that the Botox Lauren has to help her Cerebral Palsy, is no longer working and she will definitely need continuous operation. The Dr explained the procedure that Lauren will have and it doesn’t sound great. She will be in a wheelchair for between 6-8 week’s depending on how she recovers. I wasn’t best pleased he was explaining it all in front of her as she was then crying, saying “I don’t want to have it done mum, Why me” Another question ….How do you answer?? We were both just sat hugging each other crying. Promises of magazines, treats, having visitors while she’s in hospital took away the upset for a while, but since being home, she’s asking “Do I have to have it done??” I would love to be able to tell Lauren she doesn’t have to have it and everything will be alright. Me and Joe (dad) both reassure her that things will be ok but deep down,we can’t say if it will or won’t. We know she has to have the operation. It will never cure her Cerebral Palsy but it’s the in between, the tears, tantrums, and the constant pains she is in, questions that as parents are very hard to handle.
On the other hand as bad as things feel at the minute, everything is happening for a reason. Whether it’s to make my children stronger for the future,or to help other children and families diagnosed with FACS the fact it may have helped one family is good. They will always have FACS SYNDROME and the disabilities/ illness that come associated with that, at least I have 5 beautiful children that I wouldn’t change for the world.