Something I Totally Agree With

I came across this article  while reading another written by a fellow caregiver/mother of a child with the same medical conditions as my daughter of whom I've already had the privilege of meeting face to face once already and hope to meet up with again in the very near future.

http://complexchild.org/articles/2017-articles/january/parent-or-professional/

Please forgive me but after trying everything else I now need to rabble as these recent headaches are driving me nuts!!

IN TWO MINDS

I've been thinking a lot about our last GOSH appointment these past few weeks, what was said what we saw the future that lays in front of us individually and as a family. At present my mind is whirling with so many thoughts which unsettles me. I feel out of control frustrated unsure none of which makes a good combination for someone who likes order structure A PLAN. One of the things I'm particularly struggling with is weather to share some of Jessica's most recent x-rays. Up until now we have never had the power to share because we never had copies to share only words to describe. I'm torn in many ways. Very few have had the privilege of seeing as well as hearing which took away the fear factor from so many that know and lover her allowing both them and her the freedom to just get on with life. It protected them and her from the bubble wrapping that many receive when a body is as fragile as hers. It gave her the opportunity to show case her personality and her character before old and new persons found out or were told of her fragile body. We also believe that there is a time and a place before introducing the inside of her body to her ladyship. My greatest fear is if we begin to show her x-rays that she will been seen in a different light suffocated by that god awful bubble wrap prevented from just getting on with life missing out on the world around her the very world that gives her a reason to get up in the morning and begin a new day new challenge. Then there is the symphonies the pity the "How on earth do you get through this" or "I take my hat off" kinda rubbish. Another concern is what if Jessica doesn't want the whole world looking. What if after a few years while looking back at this blog she gets upset because mommy thought it would be okay to put something as personal as an x-ray of her out there for the world to view (to be fair she'd have a valid point to). Once it's out there there's no getting it back either regardless of what restrictions you attach to it. I totally get why sharing is important believe me I know I mean it was only today that I came across a post made by another mom who's daughter has received the MAGEC rod this post included a video of her rod being expanded via the magnet as well as x-rays of how her daughter's spine looks like after the none invasive surgery all of which we tonight were able to share with Jessica as part of her prep to what will be the beginning of her journey with the MAGEC rod. Without this post and many like this one we wouldn't be in a position to prepare Jessica as much as we'd like. We would be at a loss as to how we'd keep her calm through the process we'd definitely be unable to truly help her see this journey as a gift rather than a terrifying experience. This post also allows us to prep our 2 boys as well as ourselves. These are just a few of the thoughts that have invaded my limited brain space not to mention interrupted the few hours of sleep I actually do get to have. I/WE are extremely greatful to the mom for posting today Jessica was amazed relaxed and relieved all in the space of just a few short minutes that in turn brushed away some of the fear that me and her daddy has been feeling. I'd like to one day truly share our story but as of yet my fears are very real and as fresh now as they've ever been I also believe that permission should be given before sharing so for now I'm going to hold off. 

AND BREATHE.......

BIRTHDAY CELEBRATIONS AND FAMILY GATHERINGS

2016

To put into words what this year bought us in some respects is hard. Like many families and friends it's been yet another roller coaster ride with few rest stops little swimming yet plenty of floating. We've had success such as tom achieving excellent GCSE results beginning his Alevel studies which started off very rocky but appears to be settling into it now. I passed my car theory and now well on my way to finally smashing the driving test. Charlie has achieved with his number letter and words. He's grown so much this past 12  months. Jessica continues to achieve at school and fights every day with smile to keep her ill health at bay. We've had a rocky past six months with her health its been a struggle to say the least. Chris has struggled a bit this year too. The main thing is together as a family we love support and accept each other and our feelings even when we disagree.

Tom turned 17 years old Jessica is now 7 years old and Charlie is 3 years old. Not bad considering our 2 eldest were given virtually now odds in there favour of surviving there first few years of life.

For me my biggest struggle this year has been having to get use to the loss of my beloved nanna and my mom no longer being 10 minutes down the road. Between the 2 of them my greatest supporters no longer there at least that's how I felt. I can safely say that over the course of this years festive period I've come to realise I'm not a lone my supporters are still there and always will be and for that I'm truly grateful.

2017 is fast approaching hours away whilst some plans are made like driving test hospital appointments more surgery for me another trip or two to spend time with my mom oh and of course I'm gonna be an auntie again to name just a few others are yet to be made as for the in between stuff well I'll worry and deal with that as and when it arrives.

For now I would like to wish all my family friends old and new a very happy new year my this new year be filled with happiness laughter love appreciation and so forth.

SEE YOU ALL IN THE NEW YEAR

Xmas Productions

Its been a mad week Charlie participated in his first ever Xmas production. He was a wise man bless him he sang danced and picked his nose all the way through. Charlie and his class mates did very well as for the staff they really have worked very hard to create and put together this years production.

Jessica again enjoyed her Xmas production of the Little Red Robin. Jessica played lead role of none other than MARY. She was beaming with pride and excitement and looked beautiful.

Mommy and daddy are very proud of bother these kiddo's.