Love Christmas…Hate Winter

I have never been a fan of the cold and feel it straight away, before Isabella there would be the battle of the central heating being turned on by me and off by Paul. It would all be very sneaky and underhand, with neither of us telling the other we had turned it off or on. Now we have Isabella, it stays on and Mummy wins!

Isabella isn’t a fan of the cold either, as it means she has to be wrapped up in order to keep warm, but wrapping up, means Isabella is restricted. Her (hypertonia) high muscle tone in her arms makes putting on clothes tricky at the best of times and adding layers and a thick winter coat only complicates the matter. Underneath all her clothes and winter coat Isabella can barely move her arms. The high muscle tone in her arms means there is too much tension in the muscles at rest. The muscles are tight and tense even though they are not doing anything.

With the cold weather come the colds and the coughs. When Isabella catches a what would seem a simple cold or a cough it can knock her for six. She loses her appetite, has restless nights, as she struggles to breath or gets upset and frustrated when her coughing keeps her awake. Sometimes her coughing is so severe it can make her sick. A lot of the time it takes her weeks to get over them, as they usually turn into a chest infection.With her feeling under the weather she also doesn’t feel like doing anything, which is understandable, however by her not wanting to do her daily physio exercises she becomes more stiff than usual. When Isabella is feeling under the weather not only does she lose her appetite she loses a bit of her sparkle.

I made the mistake on Monday of telling someone Isabella is all well and snot free and that she has been for weeks. I obviously tempted the hand of fate, as that night Isabella woke with a raging temperature and a runny nose.

Isabella is not the only one who struggles with this time of year a lot of her SWAN friends also battle with the winter season. So I wrote this poem and dedicate it to Isabella and all her SWAN friends.

To skip this season would be great,

Our SWANS get in an awful state,

 

With noses filled with terrible snot

and feeling cold and then too hot,

 

they can’t cope and struggle to breathe,

hearing ‘it’s just a cold’ makes you seethe,

 

Bring back summer, it was such a breeze,

No colds or coughs and without a wheeze,

 

They don’t want to play, stand or sit,

And have a really bad time dealing with it,

 

For some it’s much worse, to the hospital they go,

A place where time drags and everything is slow,

 

They struggle to sleep and get their rest,

It really puts SWAN parents to the test,

 

Just when you think it’s finally gone,

They go and catch another one,

 

We really dislike this time of year,

And cannot wait until spring is here.

 By Tracey Gardiner

Where did the time go?

It’s been 47 days or 6 weeks (however you wish to look at it) since my last post. I cannot tell you how much that fact scares me. How has six weeks gone by so quickly, without my noticing it. Yet glancing at that last post it feels like only yesterday that I wrote it, only it wasn’t, it was 47 days ago…

Having said that looking back a lot has happened in that time, a lot of things that have brought to the forefront just how precious life is. Things that have definately reminded me (us) that in living without a diagnosis things can change in an instant.

You see two SWANS in the space of two weeks stopped breathing, turned blue and were rushed to the hospital. It shook me and the SWAN family to the core. It happened so suddenly and unexpectedly. Our SWAN family, as always pulled together and sent as much love and prayers, as were humanly possible to both SWANS. Thankfully both SWANs being the fighters that they are now doing very well. You can read one of the families experiences of the horror, as it unfolded in front of their eyes over breakfast. It makes for hard yet very inspirational reading, as this SWAN’s Father was extremely quick to react. I would like to think that I would behave in the same way should I ever find mself in such a terrifying position. http://orangethisway.blogspot.co.uk/2012/10/saturday-13-october-last-36-hours-guest.html?spref=fb

Sadly only a couple weeks on from the shock of hearing about these two SWANS, we heard the devastating news of a little SWAN, just 13 months old passing away. She lost her battle to pnemonia, which had plagued her a lot of her little life. I never met her, nor did I meet her family, but it hurt when I heard the news. I cried. You may think that it is strange shedding tears for someone I never met, but she was part of our SWAN family. I remember her Mum joining the group and posting a picture of this adorable little girl, with the most amazing eyes.

Amongst the tears, were tears I guess that I had bottled up and locked away. Tears for my own little SWAN, tears for the unexpected. I have always been strong and said our family don’t want sympathy. We don’t need sympathy. Isabella is a happy and a healthy little lady. I want people to have empathy for us, to understand that living without a diagnosis is hard, as we have no prognosis and we don’t know what to expect, but we are happy and our love for our little girl is endless.

Although we have no prognosis we do however, have hope and dedication and Isabella has an abundance of strength and determination, which makes for a pretty good team.  I have said several times before how Isabella is inspirational in dealing with all of her difficulties and the tasks she has to overcome, she truly makes me swell with pride.

I guess hearing the sad news threw me a little, actually quite a lot. I was a bit wobbly anyway, as you saw in my last post.One thing I did do however was have extra cuddles and kisses with Isabella. If Isabella could speak I am sure she would have told me, ‘Seriously Mummy enough with the kisses’, as I could quite possibly kiss her scrumptious happy face all day long anyway. It also reminded me to really savour every moment, more than I already do. I already keep a diary and have probably close to a million photos of Isabella, but it reminded me that although our days our busy, not to beat myself up if we are late or don’t fit everything in. It reminded me of our family motto, as long as Isabella is happy we are.

When it came to my blog I didn’t know what to write about . Well actually I did but there was so much to say I didn’t know how to say it, so I didn’t. The funny thing is now, as I am typing I remember how good it feels to get things out, make sense of them all, only I have lots more to write about and make sense of, it is just the question of finding the time to do so!

It is not only my lack of knowing what to write that has stopped me from posting on my blog, it is the busy days and evenings that accompany family life. I have also spent long hours on the internet researching for our forthcoming holiday, staying up to the wee small hours planning our perfect Christmas Vacation. I want it to be special, a holiday to remember.

Now that I am back in the saddle, I really hope to post a lot more frequently. If someone could just give me another 10 hours in the day I should be set. Seriously though where has the time gone? Where has this year gone? It has been 8 months since I started this blog and in that time Daddy G has been and come back after 4 months away. I cannot believe it is only 33 days til Christmas, that is just crazy! I really want to share with you some amazing things that have happened in my 6 week break, sadly though they will have to wait, my eye lids are fighting to stay open…..but as Arnie says..I’ll be back… 😉