Special Children

Hi all,

So another busy week in the life of me comes to an end and I'm typing this with yet another headache which is not good. Off to the doctors for me if I can get an appointment. It will be my first visit to our new doctor which is a bit daunting as I had a wonderful doctor back in Guildford who knew me and my family very well and who we all felt very comfortable with.

This last week has seen me work two extra 12 hour night shifts to cover for a poorly colleague and, boy, was I happy to get to Friday and the end of term! As you can imagine, working in a boarding school you get a lot of the same illnesses presenting themselves as the children pass bugs from one to another very easily. This term has seen the usual run of sore throats and colds and, just during the last few days before the end of term, a bout of vomiting which made my last night busy when I could have done with it being quiet but there you are, that's how it goes and that's my job.

I have also been to the nativity plays of two of my grandchildren which was really lovely. There is nothing like a nativity to get me in the Christmas groove and hearing little ones sing 'Away In a Manger' has always, and still does, move me to tears. I was so happy to see them, and all of their school mates, singing their hearts out, speaking their parts clearly and flapping their angel wings with such grace. A magical time for this Nanny!

I think that I have mentioned before that two of my children were born with a genetic condition. That condition is called Stickler Syndrome, a relatively rare, non-life threatening condition that can affect hearing, sight and joints along with causing cleft palates. I doubt that any of you will have heard of this condition unless you know someone who has it.
I had never heard of Stickler until a few days after my first daughter was born. She was very poorly and ended up being diagnosed by fax machine by Great Ormond Street hospital when she was 2 days old. There was no internet back then and the fax machine was the latest thing in communication!
Once diagnosed, my daughter stayed in the special care unit for 6 weeks. She had various complications that needed treatment and observation but eventually we were able to take her home.
Various surgeries took place over the early years for her and I also had another baby girl who also had the same condition, although she wasn't as badly affected as her older sister.
The early and school years were difficult times for my girls and for us all as they were statemented for special educational needs, were told that they weren't allowed to take part in certain school activities (swimming!!) due to basic health and safety concerns and both suffered from various forms of bullying because of how they looked, talked etc etc.
This is really only a very, very brief synopsis of what it was like for them and therefore for us as we struggled in our own ways to deal with the constant issues that Stickler kept throwing in our way.
Ear surgery, palate repairs, detached retina, cataracts and nose reconstructive surgery were just some of the physical traumas that my girls had to go through.

Now both of my girls are grown women and married. The horrible thing about Stickler is that is is genetic. There is a 50/50 chance that any child that either of the girls give birth to will also have Stickler Syndrome and there is nothing that can be done to influence that statistic. One of the girls has recently given birth to her 4th baby and, absolutely amazingly, none of the four little ones appear to have inherited the condition which is miraculous to me and I will be forever grateful for that.
The mum of the little ones is now suffering with one of the curve balls that Stickler can throw at you - cataracts on both eyes. Her vision is severely limited. Reading and watching TV is virtually impossible for her at the moment. I have no idea how she copes day to day with 4 little people when her sight is so impaired but she does. She hasn't complained about it. There has been no 'Why me?' from her, just relief and a little guilt that she hasn't suffered as much as her older sister has done over the years.

Shortly after Christmas my daughter will be admitted to hospital for surgery to both eyes. She will have 3 lots of general anesthetic and will in hospital for at least 5 days. She will have a littlest baby with her and the other little three will be at home with Daddy, Nanny, Grandma, uncles, aunties, friends - whoever can pitch in and help out.

Anyone who knows me or who reads this blog occasionally will know just how much I love my family but my children are my 'babies' and I never want any of them to suffer any pain or to be unhappy. When things go wrong for any of them I vaguely feel responsible (I know that I'm not and I know that it's stupid!) and I wish that I had a magic wand to make everything better but I don't.

Stickler Syndrome came into my life when I was 23 years old and it is never going to go away. I wish that I had never heard of it and I hate the impact that it has had on the lives of my children and our family but, and it's a big but, my children are incredibly brave and resilient - all four of them, but especially my eldest two who have had more to put up with than anyone should ever have to to be honest.

Before I get too emotional about it all I had better go otherwise I will be embarrassing myself and my kids but I just want people to know how brave and strong my children are. To my eldest two, you are amazing. You just get on with your lives no matter what and I don't know where you get the strength from. Nobody would ever know from just meeting you and talking to you what you have gone through and that says more than I ever could. To my youngest two, you always, always look out for your sisters and you always have done. I know that it hasn't always been easy for you and I know that your childhoods, especially, were sprinkled with Stickler related incidents that affected you both because your sisters were poorly but look at us all all....still here, still a family, still together.

Have a good week everyone

A xx