Monday, June 29, 2009

Closing doors and looking for open windows

Wow, I hadn't realised how long it has been since I last blogged here. Is anyone still there? I really am going to get back to blogging here more regularly.
We have gone through a strange stage in our adaptation to life after William's transplant recently. For the last few weeks, we have been approaching something that resembles a 'normal family' routine. William is back at school and, at the moment at least, is really very, very well. At the beginning of June, we went to Birmingham for his scopes and biopsies due at 6 months post transplant. All seems to be going well. His stoma is a bit of a mess as it is prolapsed and coverd in sores where it takes a bashing as he runs around enjoying his new found energy. It does need to be 're-fashioned' but it is not urgent and Wills was in such a state over his 'special sleep' for the scopes that the team want him to work with a psychologist to get a bit of control over his phobia before hand. This will be a fairly major op and will necessitate a few weeks in hospital and some more painful and unpleasant experiences for him. There is also no guarentee it won't prolapse again. As William's colon was removed at transplant, his stoma is for life so this is just something we will have to learn to live with if that is the case.
The girls, William and I are really enjoying getting out and about and enjoying the summer. This is the first time we have been home for any decent time in the summer and so we have never seen Croydon in the hot sun or had the chance to enjoy trips to London and further afield. We are certainly making up for lost time. We also have plans for a trip to Mum and Dad's - the first time William has been able to stay there so that will be really special, the British Transplant Games and some 'mini breaks' to combine Gifts of Life photo shoots and seeing a bit more of the country.
Most of all this adapting to life free from the constant threat of a lengthy time living in hospital is very exciting. There are some aspects that have been hard though. The children and I have spent so long out of our social circles that, in some cases, it sometimes feels very difficult to see where we fit back in. William and I returned to our church for the first time in nearly a year yesterday and everything has moved on so far without us, and so much has happened to us and within me that I hardly felt like anyone really knew me anymore. It will take time to see where the 'new me' that has been changed so much through this journey can slot back in. On the flip side, I have so many wonderful new friends who I have met along the way who are just terrific and I love them very much. There is the journey itself too. Now we are eight months after transplant, I am now able to look back on it all and using it as inspiration for new projects. So, there are some great things and some more tricky things that we are dealing with at this phase in the journey. I guess we have reached that stage of reflection where we are processing it all and how it has changed us, mostly for the better and I certainly have that feeling that I have so much to share and to give to others as a result that it is a real need to find how I can go about doing so. A transplant in the family is a real life changing event but it isn't just the transplant itself, it is the three years previously where we spent 80% of the time in hospital. This has had a huge impact and I can't just go back to where I was before, in some cases it is impossible to, even where I would want to.
Very sadly, the main casualty of the life we have led over the last few years is my relationship with Paul. I am not going to blog about the details but for a variety of reasons, Paul has found it very difficult to fit into the family. There are, of course, other things that have happened to our relationship during these last very stressful years. This kind of journey either makes you or breaks you and, unfortunately, it broke us. It is sad as we did have something really special once upon a time in a world before our vocabulary was dominated by medical terminology and the expressions we shared became limited to anguish and stress. This next chapter of my journey with Willam, Hope and Ellie really started a long time ago . It does, inevitably, bring about some tough times but I know I can turn to friends and my wonderful parents for support. I have three wonderful children and we have lots of fun things planned for the summer. On the whole, life is very good.


Anonymous said...

Sorry to hear that. Life's rollercoaster does has some funny twists and turns. I hope you can move forward with the children and enjoy the glorious summer sun we are having.
I don't always comment, but I always read 'Gifts of Life' blog updates! It is a brilliant project-I can't wait to see the finished result. I love the way that you capture each persons individual experience and personality.
I hope William is enjoying being back at school- what a milestone to achieve :o)

Becky said...

I'm still reading! It's great to see photos of Wills, and also that when you don't blog for some time, people don't start worrying, like we once did - we know it's probably that you're just enjoying life =]

I'm sorry to hear about you and Paul - hopefully you can enjoy this new chapter in your life with the kids.

I couldn't believe when you said that you are 8 months post transplant! I started following and commenting on this blog before you got the call, and I can't believe it's ben that long!

All my love, Becky xx

Sarah's Mum said...

Love and hugs coming your way. Mum and Dad xxxx

Holly said...

I'm still here!

So sorry to hear about you and Paul but I hope you can look forward to the future and enjoy the new chapter and the summer that lies ahead!

So looking forward to seeing you on Saturday!

Much Love and Hugs


Molly said...

I'm still here too and always read your updates both here and on the Gifts of Life blog.

Sorry to hear about you and Paul, but I really hope you and the children can move on now and look forward to a bright future.

I'm glad to hear that Wills is doing so fantastically, and I can't believe he's 8 months post transplant already and back at school. I hope Wills' progress continues to go well and all your plans for this summer work out.

I can completely understand and relate to your struggle to see where you fit back in to social circles as I've often felt like that myself.

Moll x x

Aunty P said...

I'm still here.
So sorry things didn't work out for you and Paul. Being a single mum is tough but also rewarding and we are all here to help you on the next stage of your journey. Much lovexxxxxP

Tinypoppet said...

always here xx

Anonymous said...

I'm still here too! Sorry to hear about you and Paul but i hope you enjoy the time spent with William and your girls.

Lovely to see photos of William and the girls.

Hope you have a lovely summer,

Emma x x

craftyclaire said...

Lets hope that this new chapter in your life is one full of joy and laughter. I know how hard the ending of a chapter in life can be but you have obviously coped before and have been coping on your own for some time when William spent months in hospital.
May you have the summer of opportunity that you have been so looking forward to and happy children to share it with.