Sunday, March 01, 2009

Beginning to Feel Settled

Still pink and happy!

Having fun with Hope - even letting her play engines

Making Thomas cakes

That smile again - meal times are such fun (even if you are not really eating just yet)

A walk in the railway park at the back of our house - we will be able to venture further soon

Hope and Ellie encouraging Wills to lick his fingers after he has dipped them in his yogurt - he did it a few times too!

Having fun building Thomas
It has been another busy and happy weekend. We have been home two weeks today - that is the longest Wills has been home for over a year. We used to get nervous after a couple of days of him being well as it never lasted more than that. Then, we would watch him slowly decline until he was too poorly to be at home, that was as long as he hadn't had a septic shock incident that caused us to dial 999 before then! I haven't quite got that out of my system and keep waiting to find him unwell. I know we will have some worries over the next few years but, right now I am celebrating the fact he has been full of beans for longer than he has ever been in his life. It is hard to relax and remember that there is no reason why he should suddenly get so very unwell so suddenly as he did with all the line infections and I find myself rushing in with the thermometer whenever the poor boy pauses a little too long or looks more tired than usual. I am beginning to feel more settled.
We are certainly getting into routine with the new medical regime and weekly schedules. William has the wonderful Sue, his school one to one health care assistant, during week days but I am only allowed to go out if I am in easy reach of home. So, for most of the time, Addiscombe is my world for the next three months. Well, we have a lovely coffee shop/cafe, a library, three parks, a supermarket, butcher, grocery shop, hairdresser and other local shops in a parade (sadly now minus Woolies - where do you go for that new CD/DVD or birthday pressie for a school friend these days???). I am getting back into my work and writing routine. I do miss other people. It is SO hard not going to church. I miss it so much, especially over Lent. I am hoping to meet up with some friends over the next week - for lunch in that cafe. Paul is around a bit more over the enxt few weeks so I will even get the chance to get into London with my camera to take some shots for my course, to attend some Brompton Fountain meetings and go to some galleries.
Emotionally, the enormity of the last few years has hit home quite hard now I can relax a bit. It was never safe to really get upset over things because, once you start how do you stop? Now, I find I sob at the smallest things. I feel really quite uncomfortable when I think of TPN and all we did and all William had to go through. I know we will have our ups and downs now but at least we have more ups than downs. I feel some guilt about those we have left behind on our journey. For those who never got that call in time, for those we have shared time in hospital with and who lost their fight, for David who shared something of William's journey and had a very special bond with him but lost his battle with cancer so suddenly... so many people. They will always be part of us and close to our hearts. On a happier note, there are also a lot of people who have helped us along on our journey. Many of whom were strangers of new friends at the start and have become close friends now. I am currently enjoying writing lots of letters and cards to those who were there with us, holding our hands, cheering us up and keeping us going. See, there I go again, getting all emotional and reflective... Well, it has been a crazy time and we are getting far away from the intensity now to be able to think about what we have been through and how it will shape our future.
I know I have to use this and I am spending Lent thinking and praying about what I should be doing now. More about that later in the week. I have waffled on long enough and medicines need doing now. Enjoy the photos...


Becky said...

What lovely photos - and you're bound to feel anxious that he's gonna be unwell, after that was the norm for so long! I've got a card waiting to send to Wills, will try and actualy remember to post it tomorrow! =] Love Becky xxxx

Molly said...

Lovely photos Sarah :)
I'm glad you're beginning to feel a bit more settled now, but it will take a while to adjust to Wills' new life post transplant. I know it took me a while to adjust when I finally escaped from hospital.

I'm glad your family are all together again and able to enjoy each other's company as the photos show so well.

Moll x x

craftyclaire said...

It is bound to take a long time to fully settle after all it wasn't your norm for so long. Glad to see that you are all looking so happy and free from the burden of Williams illness.
may God bless you with answers to your questions over lent. (Is there a Bible study group that you could go to giving you fellowship time? and maybe some answers)

Anonymous said...

hey sweetie,

Emotions wise, like you say you can now allow yourself to get upset and I suspect the enormity of the last few years will really start to hit you over the coming months. I didn't used to cry very much when I was ill as it was just much too hard work to breathe at the same time! I didn't cry for a while post transplant but I remember the first day I did (once I was home) and I was very emotional and up and down for some time afterwards.

be very gentle with yourself, please get support and chat to friends lots and lots and keep on enjoying this amazing new life. So happy for you :) xxxx

Anonymous said...

That was Emily not signed in. Doh. xx

Holly said...

What lovely photos! It's so nice to see Hope, Ellie and William all together looking so happy! xxx

Anonymous said...

Fabulous photos! So many smiles :o)

Don't forget that you are on a journey and that all the emotions you are experiencing are part of making the next step forward-perhaps see them as healing steps forward :o)

I hope you get a few moments to enjoy fresh spring sunshine this week.


suzie said...

It's wonderful beyond words to see William so full of smiles, brought a wee tear to my eyes it did.

Bless you Sarah, I can so relate to the not having time to analyse whats going on and keeping emotions in check, but they're there and await a chance to spill out. I always think whatever we face, we do it on auto-pilot when it's happening, then we land in a strange place and have to work out where we are and how we're going to make a life in this new place. Looking back we wonder how the heck we managed to make that journey. It's huge and disorientating so no wonder it's emotional.

Thinking about you and hoping you get some fellowship time, it's been a life saver for me.

Big massive (((HUGS))) and loads of love always. x

Anonymous said...

What great photos, hes looking so happy & well. Great to hear your feeling a little more settled.

I found it quite hard to settle back to home life after being in hospital. But its something everyone will feel & totaly normal.
In time you'l get there & fully enjoy being at home, without the throught that a hospital visit is soon approaching.

Love Emma xxx

Sarah's Mum said...

We know the feeling! We find it very hard to plan things incase you suddenly need us!
Lovely photos. Hope- you look quite the young lady!
Lots of love to you all.Gma and Gdad xxxxxxxxx
Sarah-try to relax and take each day as it comes. Lots of love
Mum and Dad xxxxx

Aunty P said...

Wonderful pictures. Its so moving to read. Just take a day at a time and put one foot in front of the other.
love and hugs

Gill said...

Hi Sarah,
I've been reading your blog for a while but haven't posted before. The lovely pics of William and his sisters all looking so happy has finally prompted me to do so though. After all you have been through it's great to see things looking better.
I also wanted to let you know that a post of yours a while back (asking people to hold bake stalls on Valentine's Day) encouraged me to look at the LLTGL website and I then signed up to join Jac's walk in Fife, whenever anyone asks me why I am doing it I tell them all about you and William and how inspirational you are. I hope we raise loads of money and support to enable more people to enjoy the gift of new life just like William.
Gill XX