Another star in the sky...

Today is an emotional day for many of the SWAN community and I have been rather emotional of late and today I keep getting all teary whenever I think of a little girl who's family are doing what no parent should ever have to do which is lay her to rest...

She was only 1 yrs old and had recently celebrated her birthday, I have not had the pleasure of meeting her but I along with all the swan community shared her journey with her family...When her mum first joined our community we all welcomed her, when she shared her story, the ups and downs we were all there together supporting her...When she went into hospital we all came together and prayed and hoped for a miracle but when we were then told that she was going to the hospice for her last few days all our hearts broke for the family....then we heard the news we hoped would never happen...she passed away...we all cried together..we all felt the loss...we all tried to find the right words to say but the truth is there is no right word in this situation.

One thing that struck me over the past week is how much the SWAN community means to many of us...its the one place we all can go and don't need to pretend to be brave...we can talk about our fears and hopes and much more...Many of us have never met but we all share a common bond ....all our children are undiagnosed or were undiagnosed...we all have the worries of the future, the unknown...this is not the first time we have lost a little SWAN...there have been a few others and they are all still remembered as the months & years go by...

For many it has raised the fears that what if our children end up with a life limiting diagnosis, or develop a life limiting illness..its the fear of the unknown, who knows what the future holds for many of our children but no matter what happens we will always have the SWAN community , the love, compassion, care & support we get from each other is a lifeline...

Today we all came together and lit our candles and released balloons to the sky in memory of a beautiful little girl who has touched all our hearts...

As the sun rises today,
All our thoughts go to another,
Of a family who are doing the hardest thing ever
Saying goodbye to their little one.

For an hour we will sit in silence
And remember a precious little girl
Many candles lit all over the world
Shining brightly...

We feel helpless
Our hearts ache
And tears fall from our eyes
As we think of her family

Tonight as the sun sets
and the stars come out
A new star will join them
Shining brightly as many remember her..