THE ALMOST UNFINISHED BLOG

This blog started out to be JUST about my youngest Daughter’s wedding and how Jess had coped so well with the Big Day, but now I want to start with something else that happened to me whilst I was preparing my blog.  I think it is important to document this as I know many others go through similar feelings. 

You are not alone.

My Daughter had asked me to read through Jessica’s  Educational Statement to see if I agreed with her that all Jess’s needs were covered.  I took time out from writing my blog post to read this very lengthy report.  It pulled no punches in detailing what Jess was achieving and what was not being achieved as yet.  It has to be like this I know as the aim is to get the best possible help for her based on her needs.  I have to say that whilst reading the descriptions of her I was in full agreement with what they had written even though it was not easy reading. It was the part that summarised her abilities in age that got to me.  

Jess is 3 years old, she has global developmental delay so it is quite natural for her to be behind for age.  We tend not to dwell on this, we are very positive as as family and celebrate the things that she is achieving without paying much attention to her actual age. Seeing it written in black and white was such a shock to my system.  I felt completely deflated.  I started to look at my blog post again.  The happy words I had wanted to write could no longer be found inside my head, instead this was the sort of ‘conversation’ that was taking place:

It was hard reading about the things she could not do but then HOPE spoke up-

“It’s not that bad.  You know she is making progress”

Hope was right.  A lot of progress had been made, ok so she was a bit behind for a three year old but who cares? 

The next page detailed her abilities in age, I started to read the report. This was not what I had expected.  Suddenly….WAM… in barged DESPAIR without any warning.

Hope hid away in the corner.

“How did you get in?”

“You let me in”

“No I don’t want you here, I was talking to Hope it was all o.k.  Hope where are you?”

“It’s there in black and white, you can’t deny it – stop dreaming, stop fooling yourself” 

I wanted DESPAIR to go away but still the voice came back at me.

“You weren’t expecting that were you?”

“Come on admit it, you are living in cloud cuckoo land”.

DESPAIR began to wrap his dark cloak around me, he put tears into my eyes and filled my heart with heaviness.  I had to fight, DESPAIR was no friend of mine.  That was when HOPE came back.  DESPAIR left and once again HOPE put a smile back onto my face and a warm glow inside me.

The next day I looked at the blog post I had started to write the previous day.  This time I had no trouble finding the words.....

A PERFECT DAY

On the 15th August I had a brilliant plus very emotional day.  It was my youngest Daughter Sarah’s Wedding Day. 

Like all Mothers I had spent the past few months worrying and fretting about the arrangements and whether or not the good weather we were currently enjoying would last out for the big day.

Jessica, along with her six year old Sister Natalie, their Mum Emma and Sarah’s best friend Becky were all to be Bridesmaids.

When the wedding was first being planned Jess had only just started taking a few steps holding onto the furniture.  At the time we had said how wonderful it would be if she could walk down the aisle.  We were not expecting her to walk completely unaided and at one time we even talked about her using a walker if she was able which we could decorate for the occasion.  The important thing was that she was a bridesmaid with her big Sister.  It did not really matter if she walked or was carried by her Mum.

By the time the Big Day had nearly arrived Jess had once again proved everyone wrong.  By now she was cruising around the furniture at home with confidence and climbing onto the chairs and the sofa.  She could walk quite well holding just onto your finger and had even taken a few little steps completely on her own.  Her special boots were replaced by lightweight short leg splints which meant she could wear ordinary shoes over the top.  Because of the hot weather she had some Peppa Pig lightweight shoes which she loved.  Fingers crossed, it looked as if she would be able to walk down the aisle holding onto her Mummy’s hand but again we happy for her just to be part of it.

One of my concerns was that it would all be too much for Jessica to cope with.   I had no worries about Natalie, she was taking it all very seriously and I knew she would do everything that was expected of her.  No, my concern was that Jess might get distressed by the amount of people, the noise of the organ or the general atmosphere of the Church.

It was planned to take her to a Service in advance of the wedding but she had an ear infection and was poorly for a time so that never materialised. We were just going to have to see what happened. 

On the morning of the wedding my house was buzzing with activity, Sarah was having her hair and make up done, the photographer was moving in and out of rooms clicking away with his camera, Becky, Emma and Natalie were also getting made up and ready.  It was decided that Jessica would be got ready at home and go straight to the Church with her Daddy and Nanny & Granddad Hawley. 

I spent most of the morning wiping away tears.  No the weather had not turned, no the arrangements had not gone wrong – everything was just perfect. They were tears of happiness.  Sarah looked stunning in her wedding dress. My thoughts turned to when my girls were little, they were such pretty girls – they were now beautiful women.

Natalie was so excited.  I was not allowed to see her until after she was ready, when I did see her the tears came tumbling down my cheeks again.

I even had the make up and hair ladies work their magic on me and I have to admit I did not recognise myself when I looked in the mirror.

Sitting down in Church waiting for Sarah & her Dad to arrive.  My stomach was turning somersaults.

The organ started up with the Wedding March, everyone stood up and all eyes turned towards the Church door.  Sarah & her Dad followed by Natalie, Becky and then Emma with Jess holding onto her hand and walking.  Yep I cried again, but to be honest I don’t think I was the only one at that point!

It is fair to say that Jess was not too happy at first as you can see, especially with everyone standing up and looking at her but she did not have a meltdown, Emma just guided her slowly down the aisle and let her stand holding onto a pew at the bottom. 


She was fine during the ceremony and even walked back down the aisle at the end and loved having her photo taken outside.





A truly PERFECT DAY.

A couple of days ago Nanny Joan & I were sitting talking and Jess was doing her usual cruising around the furniture.  Suddenly she let go and took about 7 steps (maybe more) across the room to get to the television table.  We were speechless, this was more than she had done before. 

Yesterday after fetching Jess back from Nursery I managed to get some video footage of her cruising and walking un-aided on two occasions.

“She may never be able to sit up unaided.  She may never walk.”

Next time DESPAIR makes an unwanted appearance just remember that HOPE is always there you just have to let it back in.