Down in the Jungle With Monkey

The story of Isabella and our journey through the unknown…

In memory of Lyla…

on February 5, 2014

I haven’t posted since November. Today I wanted to, no needed to post. Over the last few days I have being devastated by the passing of a beautiful SWAN, who I never met. I never knew her personally.

The previous paragraph was written a week ago. I had to stop, as I was lost for words and couldn’t see through my tears. I foolishly went on YouTube to listen to a song by Celine Dion and had to put the lap top away. I will post the link to her video at the end of this post.

I didn’t know what to write last week, I actually still don’t. So excuse me, while you join me on my ramblings, sorting out my thoughts, as I always do, with my personal therapist – my blog. Lots of my friends have blogged about little Lyla already and I haven’t found the courage to read them yet.

http://gingerbreadandsunshine.blogspot.co.uk/2014/02/the-words-of-others.html

It’s very strange this emotion you have for someone, a family you never knew or met personally. It happens all the time when I watch a film or a programme on TV, if anything sad happens I cry. If anything happens to a child I ball my eyes out, as I am sure most parents do. The passing of another SWAN has hit me hard.  It has hit the SWAN community hard. Another beautiful SWAN, who will join the gorgeous Harry and Beatrice, who went before her.

Anyone who says the internet is full of rubbish, in part is right, some of it is a real waste of cyber space. I know people who detest Facebook and again I can understand their reasoning, when some people use it to bully, manipulate, boast or simply air their dirty washing.  However for me and thousands of other people the internet and Face Book has been a life saver. I have been on Facebook for six years now, but it is only the last two and half years that have been of any real importance. 2 years and 10 months ago to be exact I found SWAN. I know I have harped on about it before, but it was a huge turning point on our journey. We had found a community that understood us and that welcomed us with open arms. At this time the community was very small, with less than 100 members. We shared our experiences, fears, tears and sadness. We hugged and celebrated virtually. We shared our deepest fears and our embarrassing moments. You see although it was our children that brought us together, we also found we had other things in common and weren’t only just parents of a disabled child.  It was so nice to have safe haven, where you could run to when the outside world had been mean or harsh. SWAN became and remains to this day, my family. It is because of SWAN and the values they uphold that I have a second virtual family, my PMG Family, who now too are a huge part of my life.

Over the years the SWAN group has grown massively, as I type we are two way from reaching 900 which is epic.  It has been harder to keep up with all that goes on, as there is so much going on, with so many members, but no one is ever forgotten and when something huge happens, everyone rallies around to offer support.  Lyla being taken to hospital was a huge example of how support can be given virtually. Not an hour passed by where someone wasn’t checking in for updates on her, it was all anyone could think of. Candles were lit, profile pictures changed and prayers were said. Then came the news we didn’t want to hear and that no parent should ever have to face. Lyla was being transferred to a hospice, where she could spend the rest of her few final days with her family. I remember playing with Isabella that same evening and her giggle making me cry, as I imagined no longer being able to hear that giggle or see that gorgeous face. My heart was aching for Lyla and her family.

For me personally the news of her passing caught me unawares. Although I had been thinking of Lyla and her family, I was at my brother’s house celebrating my niece’s 5th birthday. It was an emotional day anyway, as it was the first disco party Isabella had ever been to. We had an amazing time and Isabella enjoyed the lights, dry ice and loud music. We danced the whole time and only had a break when it was time to eat. Isabella loved every second of it and that gave me such a warm fuzzy feeling. She didn’t stop smiling the whole time. She was mesmerised and occasionally taken aback by the other children. Her enjoyment made my heart happy and replaced the few heavy moments when I looked longingly at the other children running around.

When I heard about Lyla, I took myself away to gather and compose myself. I thought about Lyla and her family and couldn’t even begin to imagine what they were going through. No one should ever have to say goodbye to their child. Not ever. My finger hovered over the tributes that had been left for Lyla, I could only manage kisses. I didn’t know what to say. What do you say to a Mother and Father who have had to say a final goodbye to their one year old daughter. There are no words.

Lyla passed away peacefully in her parents arms. That night after Isabella had fallen asleep in my arms. I cried, as I cuddled Isabella and held her soft face close to mine, her cheek was wet from my tears. I didn’t want to put her down just yet, so I sat there for a while in the dark just thinking about Lyla and her family. Selfishly I also thought about what would happen if I lost Isabella and the thought was unbearable. I thought back to the party and Isabella’s smile and it reminded me that we were very lucky. Okay so she hadn’t been running around like the other boys and girls, but she was happy and with me. Yet at the same time a family was grieving the loss of their daughter. Something no parent should ever have to do.

During this unthinkably sad time, her family have decided instead of flowers they would like donations made to the Forget Me Not Children’s Hospice, where Lyla spent her last few days with her family.  http://www.justgiving.com/Lyla-Pearson Given the pain they are going through, they are thinking of other families and their children, which is truly remarkable and amazing.  Please visit the memorial page and read her beautiful tribute. Please donate if you can.

There is a saying that life is precious and it most certainly is. Hold your loved ones close and cherish every minute you have with your children.

Lyla will be laid to rest tomorrow at 10:30 am, please spare a thought or prayer at this time, as her family say their final goodbye.

Tomorrow Lyla,

We say a final goodbye,

You have grown your wings,

and sadly must fly,

When we look at the night sky

we will think of you

as Lyla translated

is ‘Night’ in Hebrew,

Sleep tight Little Lyla,

you we will miss,

as we look to the sky,

and blow you  a kiss.

By Tracey Gardiner

For you Lyla – Fly – By Celine Dion.

http://www.youtube.com/watch?v=U5W4RjTW3zQ

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