The winter

Well its that time of year again. 

Time to start getting cosy & stacking up the logs for the fire! The cold winds are coming in and the whole countryside is turning beautiful shades of reds oranges and Brown's..... 

Lets stop that romantic notion right there! To the parent of a medically fragile child it is usually the beginning of a nightmare.

Certainly a few months of hospital visits tears and worry.
          Since 1999 i have dreaded the winter. No one understands you see what it is like. I do get why they don't understand, i am also the mum to  3 other very healthy children. 

You don't think twice if one of them gets a sniffle or a bug its fine, they carry on as normal and shake it off in a few days... This is totally normal and acceptable so i do understand. (Although i would prefer them to not breathe at this time in the vicinity of Molly).

Colds and bugs don't really bother people. People with normal healthy immune systems. So that's why i don't blame you if you send your child in to school with snot pouring down his face. I get it you have a life you need to get to work to earn monies your life cannot stop because of a bit of snot. 
        The thing i would just like to explain though is that my life does stop with a bit of snot.  

In 1999 my first experience of snot invading my home in a damaging way was 6 weeks in to my new Babies life. A careless friend had dropped her daughter off at my house with a bottle of calpol and some antibiotics.   Turns out she was getting over bronchitis... But she was fine for school (apparently). Within a week  my 6 week old baby was in an oxygen tent in hospital with bronchiolitis. 
Every single winter since has been a nightmare. 

Forward wind 17 years to last December and molly was again in hospital. With a chest infection AGAIN and chronic asthma. We were cutting it very fine to have come out late on Christmas. Eve. This particular cold was passed on to Moll by her 4 year old sister who caught it from nursery. 

Again there was the UNKNOWING mum at the door with a bottle of calpol letting loose her snot monster to infect all of the good people of playgroup. 
This one simple action nearly ruined our Christmas. 
Between the months of October and late February are a  Real problem for us. Molly has missed every single Christmas party She has ever been invited. To ... Every single one. She is nearly  18. 

The booked pantomines she's not been to is so unfair. 

To watch her cry as her daddy used to take her brother off the ward at visiting with the Christmas trees & decorations all around was heart breaking.

Please listen to the song wires. This is the song which remind's molly's dad of her when she was small. It is so true. 

I have been producing the artwork in posters and maps for our towns Christmas Goodwill evening for 10 years now. Molly has gone to the event only once  because of illness. For 14 of these years we didn't have a diagnoses for molly. We did almost have our own bed allocated in the children's ward though. 

             A simple cold would always turn in to a chest infection or pneumonia.  Because unbeknown to us molly did not have the mechanisms inside her to recover or fight off a simple cold. She still doesn't. 

So the autumns drawing in and i see a lot of our kids in hospital again. I call them our kids because we are like a big family with this one thing in common.

Each of us knows the immense strain which is put on our family's each year. The stress and worry us parents go through  each time a Virus hits the house.

          I am absolutly shattered personally from 17 Years of intense physiotherepy. Constant nebulisers staying up all night just to make sure my child can breathe. Often the effort was not enough and we would still be in an ambulance going back to the children's  ward.          Seriously there are thousands of kids out there this affects. Just because moll is rare 1 in 100 thousand, children with asthma are at the same risk once they have a cold. I think that is 1 in 5 kids. 

Let me tell you your local hospital will be packed to the rafters every winter time. 
The added worry we have is sickness bugs. A child with adrenal insufficiency could literally die from a sickness bug. Because they would not be able to absorb their life dependant medications. Sickness bugs also create havoc with their Salts and electrolytes, which can also lead to adrenal crisis.
          So please guys think about how many sniffles your child has in a year? My child would end up very poorly and in hospital about that many times. If you times that by 10, allowing the fact that her immune system would let in even more colds.  Then you have to start feeling a bit sorry for us.
Ive added this cartoon not because its funny. But to grab the attention of normal parents of healthy children. 

Just keeping your child home for one more day could prevent 2 or three weeks of hell for a family of a medically fragile child. 

So on behalf of myself and many other mums like me out there. i do not want to keep my tradition of writing my christmas cards sitting next to my childs hospital bed, because someone has let their kid infect the class with snot. 
           Thanks for your consideration. We don't mean to be rude but life is difficult this way.